PMRGCAuk

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Are steroids the only way?

Thank you for inviting any questions.

I don't want to be confrontational or divisive: I would really appreciate help concerning prednisolone. Can a person recover without steroids?

Just before my 57th birthday I had neck pain and headaches. This progressed to a feeling of a RA or OA attack in my neck, shoulders, one elbow, hips and knees. This then morphed into muscle weakness and pain and finally got diagnosed a couple of weeks ago.

Daft as it sounds I thought it was the menopause. I work part-time and do a physical job. I got increasingly weak and immobile so that the only way I could do my job was to take pain meds and get help with dressing. Then by lunchtime my legs hurt so much and so weak I would lean against a wall or grab a moment on a chair. The drive home was a relief to be sitting but then getting out of the car a huge challenge. My legs didn't want to move. I managed to work until 3 weeks ago and I spent my days off in bed. This is how I struggled to do my job.

I am waiting for rheumatology appointment but despite the referral labeled urgent there are no appointments available.

I've been given prednisolone but can't bring myself to take it. I've done lots of reading on it and I am convinced I will get T2D, cataracts, and other nasties. I know no-one likes to take meds and I am not unique.

Are there any success stories without using steroids?

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Wouldlovetorun

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162 Replies

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winfong2 months ago

To be quite frank, no, not at this time. There is the possibility of side effects, as there are with any number of drugs. In most cases - and yours, as it sounds like - the side effects (you won't get all of them; you may get none) are a lot less bad than the symptoms.

When you do get a chance to talk with a rheumo, ask about steroid-sparing agents. These can help, but are not a replacement.

Wouldlovetorun in reply to winfong2 months ago

Thank you! Will ask about it.😊

HeronNS in reply to Wouldlovetorun2 months ago

They are not usually offered at the beginning, and should not be as they all come with their own suite of side effects. Many of us do just fine with pred alone, but useful to know about them if you encounter difficulties. The best way to avoid tapering problems is to go very slowly. "It isn't slow if it works!"

Wouldlovetorun in reply to HeronNS2 months ago

Thank you ☺️ Tapering is fundamental and balance exercise and rest.

HeronNS2 months ago

First of all, welcome to this community. There will be others along with links to lots of information, and their own stories to share. But I don't suppose there is a single one of us who was thrilled to learn we had to take a corticosteroid in order to feel better.

No there is no other treatment yet available to treat PMR, although once on the journey there are nowadays one or two additional medications which may help if the journey is not smooth sailing.

No one gets all the side effects. Some of us get none, or none worth mentioning. I didn't gain weight, and that was no doubt aided by my fear of diabetes as I do have a tendency to develop high blood sugar (although never diabetic) so I gave up virtually all "white" carbs for several years. I did develop increased ocular pressure, but never high enough to need treatment and it gradually returned to normal as my dose tapered down. Because I was afraid of the possibility of bone thinning leading to osteoporosis I did everything I could to keep my bones healthy and in fact even increased my bone density! Lately my ophthalmologist has told me I'm developing cataracts, but I've been on pred since 2015, and am now nearly 76, so to my mind there's no connection. Age is the most likely cause.

Most of us are able to start tapering from the starting dose (usually 15 mg but may be higher for some) after about a month or six weeks. Provided we don't rush and cause a flare of the symptoms it can be possible to attain the lowest best dose which still curbs the PMR symptoms within a couple of years, but we are all different and our time at any particular level really can't be measured against others' "progress" or lack of it. When it comes to pred you need what you need.

My attitude towards pred was very ambivalent for several years, but as a "long hauler" I've become reconciled to it. I tapered successfully to 1.5 in two years, but my lowest best dose appears to have been at or near 2 mg. At this level there are no pred side effects to speak of, yet I have no PMR symptoms and lead the normal life of a now quite elderly person. Pred has to be treated with respect but its effect on our pain can be quite miraculous. At the low PMR doses side effects can be managed, as they were in my case. Knowledge is power!

Wouldlovetorun in reply to HeronNS2 months ago

Thank you! I appreciate your helpful advice. I've got a cataract forming v early stages from steroid drops for uveitis a number of years ago. And diabetes is in my family. This diagnosis was a shock to me. I'm so pleased to have found this group.😊

HeronNS in reply to Wouldlovetorun2 months ago

Shock to me too. I was quite ill for over a year (useless doctor who I felt viewed me as a hypochondriac old woman) and after googling my symptoms and coming up with PMR I immediately dismissed the idea because I couldn't believe I'd ever have anything serious enough to need steroids, and promptly forgot about it. By the time a new doctor diagnosed me some months later I went straight to the pharmacy, got the pills, and took them the moment I walked in my door!

There is a gentleman who posts here occasionally who has had his own troubles with uveitis and like many of us a rather fraught relationship with pred. You are definitely not alone.

You might be amused by a little story I wrote a few years ago. My views have mellowed somewhat but reflect quite truly how I felt then.

healthunlocked.com/pmrgcauk...

Wouldlovetorun in reply to HeronNS2 months ago

That was a good read! Thank you! You had a sensible view on the meds and did the right thing. How are you now? Hope you are still enjoying the thick cool grass with no sign of Pred😀

HeronNS in reply to Wouldlovetorun2 months ago

No, as I said in another reply (gosh I have been piling on today, haven't I, sorry) I'm still taking a minute amount, 1.5 at the moment.

Wouldlovetorun in reply to HeronNS2 months ago

You have managed to cope with the Pred journey and its not far to the Finish. I hope you continue to make a full recovery. X

LozzaSandstrom in reply to HeronNS2 months ago

Thats brilliant ! Thats exactly what Mr Pred is - you need him but you know he needs payoffs!

Wouldlovetorun in reply to LozzaSandstrom2 months ago

Hopefully the benefits are far more valuable.

HeronNS in reply to Wouldlovetorun2 months ago

They are.

Merryfield in reply to HeronNS2 months ago

Well-written, Heron.

Wouldlovetorun in reply to HeronNS2 months ago

Are you feeling well now and off of the steroids?

HeronNS in reply to Wouldlovetorun2 months ago

Feeling well now, but am still taking a small dose, 1.5 mg at the moment and hope to be able to taper to 1 in a while - probably after visiting my daughter who lives a very long, uncomfortable, train ride away. The median length of time people have to take pred is somewhere around six years, not sure of exact time, but that means many are off pred in a much shorter time than apparently I will be! But I've been at a very low dose for a long time, just that repeated efforts to taper to zero have been unsuccessful so far.

Wouldlovetorun in reply to HeronNS2 months ago

That's good news. And the dose isn't dangerous as it's so low? Hope you have an enjoyable train ride and happy time away. You must be feeling sick much better today even contemplate it. Thank you for sharing your experience and knowledge. 😊

HeronNS in reply to Wouldlovetorun2 months ago

No, not dangerous at all. Some doctors seem to have an unwarranted fear of pred, but at low doses even taking it for a long time does no damage, and as DorsetLady says, takes away inflammation which can cause damage.

Wouldlovetorun in reply to HeronNS2 months ago

Yes indeed. I'm going to refrain from googling damage from inflammation! Thank you for your replies 😊

DorsetLadyPMRGCAuk volunteer2 months ago

At the moment, nothing other than Pred sorts PMR successfully.

It’s not a given you will get diabetes, cataracts or any other nasties……but debilitating pain and uncontrolled inflammation can lead to a lot worse.

Just as a matter of interest, where do you live, there are different protocols around the globe, so some specialists may offer other drugs alongside the steroids, which are the mainstay for your illness.

This link, may be less scaremongering than articles you have previously read, and is written from a patient’s viewpoint -

healthunlocked.com/pmrgcauk...

Wouldlovetorun in reply to DorsetLady2 months ago

Thank you! I'm in Scotland. Yes the debilitating pain, muscle weakness and being immobile is a lot to manage. 😊

DorsetLadyPMRGCAuk volunteer in reply to Wouldlovetorun2 months ago

Yes it is…and as I said may be doing unknown damage….sometimes better the devil you know…although no one is going to say taking Pred is piece of cake…

But when - and if it’s necessary-it’s necessary.

PMRproAmbassador in reply to Wouldlovetorun2 months ago

Scotland has its own separate charity which runs local support groups - where are you, maybe there is one near you. This forum is an international one - with members all over the world.

Wouldlovetorun in reply to PMRpro2 months ago

I'm in the Highlands. Thank you for your reply 😊 will have a Google search.

Highlandtiger in reply to Wouldlovetorun2 months ago

Hello - I’m in the Highlands too. There used to be a support group that met in Inverness but as far as I know it hasn’t done so since Covid. The Scottish charity has a helpline and the charity is free to join. Both it and the UK charity put on occasional webinars which are very informative and I'm a member of both of them.

There is so much information out there and it is quite overwhelming at times but as everyone else has said, most of us were very active before PMR came along (read my bio if you’re at all interested), most of us hadn’t heard of it and most of us were absolutely horrified at the thought of taking prednisolone but here we all are - it’s the only thing that works.

Incidentally I started on 20mg on a Tuesday, by Friday I realised I’d managed to put my pants on standing up again (I hadn’t managed for months) and by the Saturday I was pain free and because I knew absolutely nothing about the condition I went off walking up a couple of mountains.

My PMR comes in phases. Every so often I think I’ve really got a handle on it and it’s all going very well then bang - something goes wrong and sometimes it seems to be one step forward and two back. But I still go out walking regularly in the Highlands, maybe not quite as far as I used to and rarely on consecutive days but last week I went a lovely walk at Stathconon and we saw two golden eagles, one adult and one juvenile and that always lifts the soul! My main walking friends understand that sometimes I can do a pretty long walk but at other times I feel much tireder and we adapt accordingly on the day which takes the pressure off.

Wouldlovetorun in reply to Highlandtiger2 months ago

Thank you very much for your reply.

That made me smile about putting pants on. I can't do it normally...I have to leave them on the floor and play hoopla with my feet. Bras are another challenge. And I don't wear tights...wouldn't even try!

You have managed really well with your walking. What a treat to see the eagles 🙂

Did you find your muscles depleted? Or is that just the feeling from pmr?

I would like to go to any groups in Inverness if I'm able and the Internet talks too. Thank you again and best wishes

musicality in reply to Highlandtiger2 months ago

Yes unfortunately, Pred does the job and very quickly too, but I have been on Pred for over 17 years) - first dose was 40mg for a couple of weeks because I also had GCA, then reducing. Grateful it protected my eyesight though. Have been trying to get off it seems like forever, but had flares (or so I thought) so have yo-yo'd with the Pred dose and tried a steroid sparing drug to no avail. Now on a very low dose of Pred. and hoping. Unfortunately I have had two cataracts, heart problems, muscle wastage, etc., and other ailments that could well have been caused by long-term steroid use. Very disheartened a few years ago to learn of new biological drugs, but not given the opportunity to try them, even though I have been struggling all this time. The Covid intervention plus no Rheumatology appointments, hospital doctors and GP's leaving/changing, etc., etc., have added to the problem. Yes, I agree with everyone - the only way to reduce Pred. is the DSNS method recommended - DEAD SLOW, NEARLY STOP. For me that is reducing half a mg every 2/3 months, but everyone is different. It's also good to know that some lucky people don't get any, or very few, side effects. Thank you everyone for all the good advice!

Wouldlovetorun in reply to musicality2 months ago

I am very sorry to hear you are poorly and suffering 💐I hope you get the help and support you need from gp and rheumatology.

And that you will be on zero soon.

Best wishes

Koalajane2 months ago

yes, I have had cataracts, but easily removed. I have not had weight gain as I changed to a low carb diet and lost over 3 stone in weight. I do get some facial hair! I don’t have osteoporosis and I would say I am a lot more health conscious and fitter since getting PMR. Yes you can get side effects but having PMR I know I would not be without my prednisolone.

Welcome to this wonderful forum. It has helped me so much.

I hope your journey with PMR goes smoothly and that you are able to take your prednisolone to help you on your way.

Wouldlovetorun in reply to Koalajane2 months ago

🤗thank you! 3stone is a huge achievement. And great you're feeling fitter. I have a gp appt tomorrow and not sure why as receptionist asked me to go in. I have frightened myself out of taking them and probably I need to read more positive things. I'm in a pickle.

Hunter134 in reply to Wouldlovetorun2 months ago

I welcomed the prednisone.We all are in alot of pain before we get diagnosed.I figured it was better to live without so much pain and the risk was worth it.You ll be ok,don't be afraid.We can't be happy when it hurts to do anything.

Wouldlovetorun in reply to Hunter1342 months ago

Its a debilitating disease and is a bit of a shock when it's diagnosed.

It will be with trepidation I take them🫣

Thank you for thinking of me.

Hunter134 in reply to Wouldlovetorun2 months ago

I totally agree it is a disease that changes our lives.Having this forum has helped many to understand it and ways to cope.I have many days I forget I have it lol.

Wouldlovetorun in reply to Hunter1342 months ago

😊

PMRproAmbassador2 months ago

The other side of pred:

I have been on pred for nearly 14 years, I have no sign of T2D (Hba1c of 37), my bone density hasn't changed significantly and I have just the very beginnings of cataracts - but I'm nearly 71 so hardly unexpected. I gained weight with untreated PMR - I had had it for 5 years before being offered it - it rearranged itself on prednisolone, I gained more on methyl prednisolone but lost it all once I was switched to a form of prednisone and went on a low carb diet (which also reduces the risk of developing steroid induced diabetes which isn't the same as T2D in fact),

This is a link to another thread asking the same

healthunlocked.com/pmrgcauk...

and in it is a link to my story of 5 years of PMR without pred - not out of choice but because I wasn't diagnosed.

Wouldlovetorun in reply to PMRpro2 months ago

🙂oooh that is very interesting to read about diabetes. I can't imagine having pmr untreated for 5 years. How did you cope? Thank you for your reply 😊

PMRproAmbassador in reply to Wouldlovetorun2 months ago

Read the link in the link for the story. I coped because there was no choice - as is so often the case, I was at the gym every day for aquafit - because I could afford the off-peak gym membership and it had a warm pool and I worked freelance from home. I couldn't have worked otherwise, I was 51 when it started but by the time I worked out what it was I had "lost" much of my 50s.

But believe me - that made the prospect of pred far less unappealing. I can remember like yesterday that day when I took 15mg of pred and 6 hours later could walk down and back up stairs normally.

AuthorJ in reply to PMRpro2 months ago

I totally agree with you, PMRPro,

Welcome to this forum, Wouldlovetorun! A bit of my story, of my journey with PMR which, I hope, gives you hope. I was undiagnosed for four months. It began with neck pain which grew to my shoulders, arms, back, bottom, thighs, and knees. I had such trouble doing normal things like getting dressed, brushing my teeth, getting out of bed, combing my hair, etc. I often cried with the pain. Then, at 75, after I finally was diagnosed and given a 15 mg of prednisone prescription (which I had SO feared), I took one pill and felt like my old self. I have not had any side effects (am taking Prolix for my bones - which has lessened my osteoporosis!). I now consider prednisone, which I now take 4 mg, my very good friend. I could not have made it without prednisone! I have been able to walk miles at a time as I had before I had PMR.

I absolutely have learned so much from this forum...thank you all!

Wouldlovetorun in reply to AuthorJ2 months ago

What a wonderful and positive experience you have had with Pred and getting your mobility back again. Thank you for writing to me.

This forum is a brilliant support.

I was telling my gp about it this morning 😊

Beat wishes x

DorsetLadyPMRGCAuk volunteer in reply to Wouldlovetorun2 months ago

Many have untreated PMR or GCA for a long time - my GCA for example for 18 months - GP went off in completely the wrong direction with her diagnosis. I ended up being diagnosed in hospital after I had lost sight in one eye after months of debilitating pain. ..and probably taking a lot more Pred than I needed to….but now 6 & half years after taking my last Pred, I’m good, and it’s all a distant memory - well apart from the eye - of course. 😊

Louiseiw in reply to DorsetLady2 months ago

I was really lucky because I was seen by a GP who was on the ball. She suggested GCA straightway took loads of bloods and put me straight away. And i was seen by Rheumatology within 2 weeks.

Wouldlovetorun in reply to Louiseiw2 months ago

That's brilliant!

Must have been a shock though.

Hope you're doing much better now and life returning to normal 😊

Wouldlovetorun in reply to DorsetLady2 months ago

I'm sorry about your eye😔 what a distressing time you have had.

Hope you continue to be pmr/ gca free and enjoying life.

Thank you for writing to me 😊

DorsetLadyPMRGCAuk volunteer in reply to Wouldlovetorun2 months ago

Now you know why I will always champion Pred... not saying it's always an easy ride ... but certainly in my case much better than the alternative.

Wouldlovetorun in reply to PMRpro2 months ago

Thank you for sharing.

Hope you are feeling very much better now.

🤗

123-go2 months ago

Your question has been asked many times by more than a few newly diagnosed people and as you will have already seen the answer is ‘no’. When you’ve previously been fit and active and sometimes all things to all people and now unable to do all those things that you once took in your stride is a hard knock to take and to accept. However, it is what it is and help is there in the form of prednisolone to lower the incapacitating and damaging inflammation in your body. It won’t magically disappear on its own- more’s the pity ☹️.

My advice to you is to start taking the steroids as prescribed (what is the dose?) I can 99.9% guarantee that if you are on the correct dose the lessening of pain and gradual return of some mobility will convince you that you are doing the right thing.

I wish you well and look forward to hearing better news of your progress with Prednisolone. By the way, you are in no way being confrontational or divisive. I think you are in some way angry at yourself for being sick and therefore finding it hard to accept your current situation. Go forward with positivity and beat it-but gently and with patience 😉.

Wouldlovetorun in reply to 123-go2 months ago

Very well written and I think you have got near the bone. I'm hugely disappointed with myself for getting it and thought it was the menopause. I've had a number long term sick leave and now I'm off again. I tried hard with diet and exercise and pushed myself to keep going into work. I really appreciate your kind words and am sat here crying. I'm not sure of the dose as I've hidden them from view...i thought she said 20. I was desperately hoping to see the rheumatologist before taking them but there are no appointments. I think I have to take them and all of you on here have been so brave and sensible. Thank you x

HeronNS in reply to Wouldlovetorun2 months ago

I thought for the longest time I was simply out of shape because the pain was so like the pain of over-exercising when you aren't used to it. By the time I finally got a diagnosis I thought I was dying. Try not to defer your treatment any longer. You can come on here and rant as much as you want or need to, and there's always support, but I sincerely hope that you will feel better within a few days of starting pred.

Twenty mg is a quite usual dose for PMR. Fifteen is generally the lowest amount offered but rapid improvement is even more likely with 20.

Wouldlovetorun in reply to HeronNS2 months ago

Thank you! Having shared my worries and concerns and listening to so many positive replies its helped enormously. I only realised this evening that I've been beating myself up because I got pmr. I so wanted to try other ways of getting rid of it. Should I ask for 15 instead of 20? It's a nasty disease and I told my husband I feel 90. I don't sleep well and am exhausted. Hopefully things will improve. Has anyone on here tried eliminating foods after getting tested for food allergies or intolerance? I had this thought if I am ill because of the food I eat I could stop eating them and perhaps improve 😏 very unlikely isn't it? This forum and all you dear people have helped me more than the books and dr Google. Thank you!

HeronNS in reply to Wouldlovetorun2 months ago

Nope. Take what the doctor orders. At a certain point you will have a lot to say about rate of taper, at least that's what a good doctor will say, but at the beginning you should take what you are offered. Twenty is very reasonable, and quite a few people who start at 15 have had to increase. The way tapering works is this: you start by taking more than you need. For 4 to 6 weeks you take that starting dose, which should wipe out 70-100% of the pain (and accumulated inflammation), then you begin to taper. The point of the taper is to reach the lowest dose which still controls the symptoms, and eventually to taper off completely. A rule of thumb is to taper by no more than 10% of the dose, although many are advised to drop by 2.5 from 20 to 17.5, and a month later to 15. Some can do it, some do better with 1 mg at a time. Once you get to that stage if you have questions, or if your doctor is encouraging you to taper faster, you will find lots of support here. The secret to a successful taper can never be emphasized too often. Slow and steady. Patients have developed slow taper plans which help.

Good luck with your doctor appointment, and don't be in too much of a hurry to see a rheumatologist.

Wouldlovetorun in reply to HeronNS2 months ago

Thank you very much ☺️

Wouldlovetorun in reply to Wouldlovetorun2 months ago

Plenty of good advice.

I am a bit surprised about the rheumatologist🤔

So hopefully the pain will mostly go at the beginning.

Does anyone manage to run/jog or is it too ambitious. Its something special that I've lost.

Thanks again.

Will let you know how things go tomorrow.

☺️

Koalajane in reply to Wouldlovetorun2 months ago

I walk fast and try to jog a bit!

I love my walking and my Fitbit keeps me going. My aim is to walk at least 13,000 steps a day which is easy when it is a nice day. Not so easy when it is raining.

I see you are in the Highlands. What a lively place to live. We visit every year and stay in Ardersier near Inverness.

Wouldlovetorun in reply to Koalajane2 months ago

Sweet of you to reply. How long did it take to get back to walking properly and even jogging? That's a lot of steps. You still walk despite the weather! ? Yes it's a beautiful part of the world and I love living here. I know Ardersier- pretty place by the water.

Koalajane in reply to Wouldlovetorun2 months ago

I would say from diagnosis I built up my steps after 3 months. I already had type 2 diabetes I think but it was not diagnosed until 3 months after my PMR diagnosis. This was the incentive for me and I changed my diet and started walking. It took 6 months to get walking properly and this put my diabetes into remission. I soon discovered that walking brings my sugars down so I have kept up the walking. So I have been in remission from my diabetes, which my nurse does think is steroid related, for over 4 years.

PMRproAmbassador in reply to Wouldlovetorun2 months ago

Some do but rarely at the start and when you restart you will have to train from scratch at first. But running again is possible - read this:

healthunlocked.com/user/Ski...

Climbing Annapurna IV is optional ...

Wouldlovetorun in reply to PMRpro2 months ago

Wow! Thanks for sharing

LucilleG in reply to Wouldlovetorun2 months ago

When I first started the 40 mg of Prednisone, I was like Wonder Woman! I was decluttering my house, as well as running with my dog in the forest. As I tapered and once I realized that I needed to not stress my body out so much, I continued to walk approximately 10 km (6 miles) a day (over two walks with my dog). When I was undiagnosed for 5 months, I would walk my dog in the evenings (no way I could have walked in the morning - could hardly get out of bed with the pain!), but I wasn’t enjoying the walk at all. I now walk way more then I ever ran (with the exception of when I was training for half or full marathons), with a walking distance of ~70 km a week compared to running ~30 km a week. I do run a bit here and there during my walks with the dog just for fun (little spurts), with no pressure to get any running in at all and no thoughts of running a certain speed, etc.

I do want to get back to running, and I guess I could start to do some running (more than the little bursts of running with my dog), but I’m trying to be careful and not push myself like I’ve done in the past - probably what got me into the position where PMR was triggered. I’ve always pushed my body - whether it was to try to get a better time in the half marathon to staying up half the night preparing lessons for my classes, while also taking on another job that was near and dear to my heart. I am now off work and will be off until the PMR has gone into remission and my adrenal glands are producing the cortisol that my body needs.

I do have a rheumatologist, but I only have phone consultations with them every 6 months, which last for 5 min. They really haven’t been helpful at all, and were downright terrible at the beginning! (More info in my bio about that). I was the one who requested the referral to the rheumy and wish I hadn’t.

Wouldlovetorun in reply to LucilleG2 months ago

Thank you for taking time to write to me.

A little bit of wonder woman would be great as my house needs a blitz.

I love parkrun and was never fast. I'm not a speedyfeet. But I love it. And I can't see it happening for a while.

Do folk generally return to work with pmr?

I'm intending to read the bios😀

Was the 40 for pmr?

Best wishes and keep up the running...but not too much😉

LucilleG in reply to Wouldlovetorun2 months ago

I am on long term disability and I will try to return to work in the next year. I can start back at 25% and work up from there, but I’m not putting any pressure on myself and listening to my body. I have to keep my life as low stress as possible, and my job can be very stressful, with the workload being as high as 80 hrs some weeks. I'm taking this time to see how I would like retirement, and as an overachiever and a person who takes on the care of others, I'm happy to say that I'm getting used to saying no and taking care of me.

I started out at 40 mg a day because the GP was worried that I might have GCA, which I didn’t. I did taper down quite quickly, with the tapering coming to a halt when I got to 4.5 mg 6 months later (much too fast!)...my tapering plan is in my bio ☺️. Over a year later, I'm currently tapering down to 4.5 mg with no pain. I do find I'm exhausted quite a bit, but that is most likely due to the adrenal glands having to start producing cortisol again.

Wouldlovetorun in reply to LucilleG2 months ago

Oh I am sorry.

Is this normal for pmr?

You are doing the right thing and take care of yourself.

Take time and rest 💐

LucilleG in reply to Wouldlovetorun2 months ago

Is this normal for pmr?

Sorry, I'm not sure what you are referring to.

I think that my PMR story is quite normal, except for how much I walk daily. Overall, I think that I've been quite lucky that I can walk 10 km (6 miles) a day...the other day, I walked 16 km (10 miles) (went for a nice walk with a colleague), and did not have any soreness or fatigue from the additional mileage.

When you get a chance, if you haven't already done so, you should start writing up your bio. It is very helpful for the wise ones who we count on to have a place to look for info when deciding on what advice to give, but it is also helpful for all of us. It took me quite some time to put mine together, but it was a good exercise to be able to recount this journey from the start to where I am now.

Wouldlovetorun in reply to Wouldlovetorun2 months ago

Sorry the words were in my head and didn't make sense.

I thought pred sorted out the disease and one feels so much better.

Is this normal for pmr? Are the majority unable to work. I thought naively Pred made folk feel so much better.

I was hopeful .

Best wishes x

LucilleG in reply to Wouldlovetorun2 months ago

If it were me, I’d go with the 20 mg dose that was prescribed. If you read my bio, I started getting pains in my head, shoulders, and then in my hips, groin and upper arms. This started Jan 2021 and I was diagnosed 5 months later. I was prescribed 40 mg because the GP was concerned it might be GCA, which it wasn’t. The pain was gone within hours, with the exception of my upper arms - that took a few days to go away. I briefly thought about not taking prednisone, but I was losing weight and I thought that I’d end up being a 95 lb 95 year old woman who couldn’t move in no time! (I was 56 when the pain from PMR began). I’m also a runner, and I briefly ran in the summer of 2021, but it was just in the forest with my dog, so not a lot of distance and I made sure to be careful. Since then, I made the decision to walk everyday and not run at all. I’ll hopefully get back to running when PMR goes into remission. I’m currently tapering down to 4.5 mg right now.

Wouldlovetorun in reply to LucilleG2 months ago

🙂thank you for your good advice. I think walking is a great thing to do. That was a long time before you got diagnosed. Mine was 3 months. Sounds like bliss running in the woods with your dog 😄. Hope you continue to improve. You did really well losing weight.

LucilleG in reply to Wouldlovetorun2 months ago

I didn’t lose weight on purpose. I continued to lose weight while on Prednisone - I lost the first 5 lbs before the diagnosis and then lost another 15 lbs while on Pred. I got down to my high school weight...and I was a scrawny kid! I did have lots of stress as my husband was very ill, so that probably played a part. I’ve now gained back about half of it.

Wouldlovetorun in reply to LucilleG2 months ago

I'm sorry your husband was ill at the same time as you.Yes I too am struggling with things. Our symptoms are much the same.

I've not got the same appetite but I'm not losing weight. I am hypothyroid too.

I think I need to start the steroids on Friday morning. I want my husband at home incase I have a reaction to them.

Thank you for your reply and thoughtfulness.

Whatawonderfullife in reply to Wouldlovetorun2 months ago

Hi Wouldlovetorun,

You sound the same as me when I was diagnosed, in shock and maybe in denial. Think of the steroid as your friend for now. I think you’ll be surprised at how much better you will feel, once you’ve taken that first, difficult step. Then you can take stock, think about what has happened and how to move forward.

There are so many people here who will give you the support and answers you need, helping you along the way but the main thing for you is to accept that you are poorly, you need help to get better and the steroids will do that.

I hope this helps you?

Wouldlovetorun in reply to Whatawonderfullife2 months ago

Thank you very much for your thoughtful reply.Yes shock and felt rather naive that I didn't google it as I was sure I needed hrt.

I need to follow your advice and not stress about Pred.

Hopefully the steroids will work and I will be feeling much improved.

I hope you are recovered now and in good health.

Best wishes

☺️

PMRproAmbassador in reply to Wouldlovetorun2 months ago

It doesn't work - honestly. People over the years have tried pretty much everything, Diet will have a role to mitigate the effects of pred but that is something different and I did mention it in my reply before. Cutting carbs (especially simple carbs) and added sugar in particular will also help the inflammation but in no way will it replace pred.

Start with whatever the doctor gave you and once the symptoms have improved you will be able to taper down relatively easily if it well above what you need at the moment. Those doses aren't for ever for 95% of patients. A few of us have a longer, resistant form of PMR but it is unusual.

Elispeth in reply to Wouldlovetorun2 months ago

Hi Wouldlovetorun. You asked if anyone on this site had ever tried keeping a food diary afer getting tested for food allergies etc. I too wanted to try other ways of 'getting rid' of my PMR in the early days. I was diagnosed with PMR six years ago. When I became ill I took the prescribed steroids for a week to ten days (and they really helped) but then I decided to find an alternative way forwards for myself. I didn't want to take steroids at all.

I was treated for 8 months by a Homeopath (who had previously practised as a GP) and I kept a comprehensive food and alcohol diary. I was determined to get well by working only with my Acupuncturist and Homeopath. At that time I was running my own business and was also extremely active swimming and walking regularly at least five times a week. I prided myself on being in total control of my life. I worked hard and travelled abroad every three months or so to rest and de-stress.

As the months went by I experienced myself as beginning to really struggle. Instead of going to work one morning I went to my mother's house and lay on her bed. I had never felt so unwell in my life. I couldn't understand what was happening to me and I thought that I was going to die. I was in a lot of pain in my body and my head and I could hardly walk my legs were so heavy. I couldn't lift my arms up very well at all.

I ended up phoning my doctor in tears and having to admit to her that I had been collecting my prescription every month but had not been taking any steroids. I had to admit that I really thought that I was going to be able to beat this disease with willpower and discipline alone. The rest is history!

After giving up work I now manage a very different (alternative) lifestyle. I now listen only to my body. If I have to rest then I rest. If I feel good then I have to be careful not to do too much and to pace myself. I have to keep stress to an absolute minimum or I can become incapacitated quite quickly. It's been a very steep learning curve.

Whatever you decide for yourself I wish you all the best as you move forward on your PMR journey 💐! The information on this forum is second to none. I really couldn't have managed my own journey without all the wise, kind and wonderful people who are on here ❤ x

Wouldlovetorun in reply to Elispeth2 months ago

That was good to read and many thanks for sharing it with me.

You have had an awful time of it💐

We can have sincere desires and at the same time can be slightly blinkered- I speak for myself- I so wanted to do the non steroid route.

I've not started them yet. I hope they agree with me and don't upset me too much. I've read of some people having a reaction to them.

Thank you for your best wishes.

This forum has been so helpful and supportive.

I hope you are feeling very much better and continue to improve.

Best wishes x

SheffieldJane2 months ago

This was exactly my thought process initially. Then my PMR symptoms became so severe in my shoulders and groin that I was finding it hard to walk, get in and out of the bed or bath, lift my arms above my head the lot. I was prescribed 20 mgs of Prednisalone and it worked miraculously in a couple of days. I have never before or since had a drug work so well. Weight gain was an issue but small portions and cutting out carbs have helped, I am on blood pressure meds. I see a very well equipped optician to thoroughly examine my eyes and keep photographic record of the backs of my eyes and eye surface. I lived a relatively normal life with PMR, caring for my baby grandson but always pacing my activities. Unfortunately I developed GCA/LVV when I had tapered down to 3.5 mgs using the taper programmes in FAQs on here. This is another story but unchecked inflammation can cause damage and make GCA more likely, I was just unlucky. I didn’t need so called steroid sparers with PMR such as Methrotrexate, I preferred the simple reliability of Prednisalone.

Wouldlovetorun in reply to SheffieldJane2 months ago

I am sorry to hear that. What a big upset for you. I have the same symptoms too. That's lovely you have your grandson to look after. Precious. Without the meds this would have been impossible. Thank you for your helpful replies 🙂

Bcol2 months ago

Good morning, think most things have already been said and my journey is in my bio. Pred gave me my life back and to me it's my little wonder pill. I'm also one of the lucky ones who has had virtually no side effects at all from taking it. You may not need to see a Rheumy if your own doctor is clued in about PMR and is happy to treat you. I'm nearly three years in down to 2.5mg and happily supported by my GP. Good luck, welcome to the forum, there are no silly questions so don't worry about asking and there is always someone here to listen and help.

Wouldlovetorun in reply to Bcol2 months ago

Good morning! Thank you for your reply and welcome. That's wonderful to hear you have had no side effects. Hope you continue to make good progress. I need to read the bios. And I would like to search topics but not got the hang of it yet. So I don't need to see a rheumatologist if gp competent and confident...I think she is...the problem has been me.

I really appreciate all the replies and its helped me to see I need to take the meds as there are no other options. I can't go on like I am.

Flipper12345yellow2 months ago

Morning, I had exactly the same experience and was bedbound for 6 weeks .

Without predicted I would not be able to have recovered from that situation.

I have had steroid injections in many joints and have taken pred orally for over 3 years in the past.

I was very worried to take them but I wouldn't be moving without them.

I have many illnesses and still struggling but at least I can turn myself over in bed etc now despite the pain.

Hope this helps .

Wouldlovetorun in reply to Flipper12345yellow2 months ago

Good morning! 🙂thank you for replying. It's a delibating disease isn't it. I'm sorry to hear you are not keeping so well. We don't have any choice really about the meds. Thoughtful of you to write to me and support me. ☺️

Raewynne2 months ago

I would have loved to run too when I had a relapse of GCA but there is nothing else but Prednisolone.It concerns me that you have muscle weakness right now as a bad side effect for me was steroid myaglia. I couldn't lift my feet up off the floor.It has improved over many months.

I am now in hospital recovering from a perforated bowel and the Dr believes that prednisolone could be behind that too.

Yes it will help your condition but it is a two edged sword.

Wouldlovetorun in reply to Raewynne2 months ago

Thank you for taking time to write to me when you are poorly in hospital. I hope you recover well and make a full recovery from gca.💐x

Raewynne in reply to Wouldlovetorun2 months ago

That's OK.We are all different.I think the main thing is finding a Dr that supports you and understands you.We are very lucky to have this group. If I could have found a safer medication I would certainly have taken it. I don't like having to say about these other things that have happened to me but someone has to speak up.Maybe one day the pharmaceutical company may be able to modify the drug.I have certainly learnt to surrender everything to my loving Higher Power and I very grateful for the help that comes to me when I feel very alone and fragile.

God bless.x

Wouldlovetorun in reply to Raewynne2 months ago

Thank you for writing to me.

What a trial you are going through.

I'm sorry you are suffering.

We are delicate and fragile people and it doesn't take very much to bring us low. I hope you get better soon and the meds help you.

It's been a difficult time.

Best wishes 💐

HeronNS in reply to Wouldlovetorun2 months ago

As reassurance your 20 mg starting dose is half what is the lowest prescribed for GCA so the potential for damage is less. Just be sure to always take your pred with food.

Wouldlovetorun in reply to HeronNS2 months ago

Yes I need to search low carb breakfasts that I will stick to🙃🙂🙃Thank you😊

KASHMIRI12 months ago

Good morning, do not be afraid of taking steroids. It is better than struggling with the pain and the risk of developing GCA which l have. I was diagnosed in May 2020 l started on 60 mgs which was twelve tablets a day. I had had extreme tiredness, pain and other symptoms and felt very ill. Almost overnight l felt better, to wake and think l feel no pain was fantastic. Yes l have had some side effects, but my bone scan last year was virtually normal, l have developed dry yes but that could have happened any way. The risk of developing GCA is there and if you can avoid it by taking the steroids l think as they say it's a no brainer. Could you get signed of work? Good luck. I am now on 5.5mg of steroids.

Wouldlovetorun in reply to KASHMIRI12 months ago

Thank you for your reply☺️ I'm sorry you developed GCA and some side effects. What a difficult time you are having 💐. I am signed off work. Its great that you are on a smaller dose. You have been very encouraging and I appreciate it very much. You are so positive 🙂. That's great news about the bone scan. Best wishes☺️

Thelmarina2 months ago

Others will reply. The point is that all medicines have side effects but there are coping methods of dealing with Pred that you can read about here. The choice is between a life incapacitating illness that can worsen if ignored or getting your life back. Not to where it was before, you need patience and time. But to be able to go for walks, get in and out of the car, have coffee with friends is our reward. Good luck! (Been on Pred for nearly six years, no cataracts and I’m 76. Love life 😀). ❤️

Wouldlovetorun in reply to Thelmarina2 months ago

Oh wow! You sound so positive and encouraging. Yes all meds do have side effects and there are risks by doing nothing. Patience and Time. Good advice. Thank you for replying. I've been so encouraged by all the support 🤗

Kendrew2 months ago

Hi Wouldlovetorun,

When I was first diagnosed with PMR back in May 2019, I was shocked and horrified at the prospect of having to take steroids. I'd gone from being very active, fit and healthy, to sick and weak in such a short space of time, and it was very scary.

It felt like my life had been turned upside down and nothing was ever going to be the same.

Although I've had to make a few life changes, I'm now in a really good place mentally, psychologically and emotionally, because I finally accepted that these changes were necessary in order to aid my recovery.

My recovery is slow but steady, which is the only way to approach this condition, and therefore patience is most definitely the key!

At 65yrs old I'm now living with significantly less stress in my life, I'm able to focus completely on my own health and well-being and I now have the time to engage in appropriate physical activities to help strengthen my body.

Although in a few people PMR can be a life long condition, for the majority of us, it will diminish and we will eventually recover.

It won't happen overnight though, and it won't be 'rushed'. I am now in my 4th year but 5 to 7yrs is probably a more realistic average.

If you read my bio I hope you'll find it quite positive as it represents a turn around in my attitude and approach to both the PMR and the steroids. It also describes some of the ups and downs I've experienced and how they've been overcome.

Steroids are most definitely a medication to be respected but nobody will experience all of the 'listed' potential side effects and in fact, many of them can be minimised, avoided and in some instances completely eradicated by putting certain strategies in place and 'managing' your lifestyle appropriately.

For instance, I eat a very low carb (but not no carb) diet to maintain a healthy body weight. In very simple terms, steroids affect the way our body metabolises food, particularly sugars, causing sugar/carbs to be deposited as fat in the body.

If we can maintain a healthy body weight then we're also minimising the chances of developing other complications such as steroid-related diabetes and hypertension, etc.

I also have the early signs of steroid related cataracts forming on both eyes, but I have regular eye checks, make sure I have a protective filter on my glasses to protect them from harmful rays speeding up their development, and so far they're status hasn't changed over the past 2yrs.

I was osteoporotic 3yrs ago and also had to take the dreaded Alendronic Acid, but I worked hard at improving my bone health with a calcium rich diet, yoga for osteoporosis, other appropriate exercise (within my capabilities) and a calcium supplement, and my current dexa scan showed such a significant improvement that it was enough for me to stop taking both the AA and calcium supplement. I continue to work hard at maintaining healthy bones.

I'm hoping all of this will help you see that being prescribed steroids really isn't as bad as it initially first seems, and there's much to be hopeful about.

Yes!....you're going to have to make some changes, but try to embrace all the things you can still do.... plus maybe even try some new things you may not even have considered exploring before (I have taken up stone art and knitting and absolutely love them)

Educate yourself as much as you can about the condition and the steroids as knowledge empowers you.

Being diagnosed with an autoimmune disease is upsetting and being prescribed steroids is initially very scary but I now think of the steroids as my ally in my fight against PMR rather than my enemy.

I hope this has helped you gain a slightly more positive perspective on everything, and together with all the other informative comments you've received, hopefully reassured you that although this journey may have a few bridges to cross, you'll always get to the other side eventually.

Don't forget.....always lots of support and advice to be found here.

Wouldlovetorun in reply to Kendrew2 months ago

That made lovely reading- thank you!

Useful and experienced words.

There's such a positive view towards Pred. What I suspected is doctors say 2 years when in reality it's more like 5-7.

I've been helped enormously.

I will be rereading all these messages as they are so useful.

I love stone painting but totally hopeless at knitting. Well done😊

Best wishes

🙂

alangg2 months ago

As far as I am aware, uncontrolled PMR can lead to GCA and that is something that you really don't want. Apart from being a much more serious condition, you will then need to take a much larger dose of steroid to control it so you really want to avoid that outcome.

My pred journey (for PMR) was very straightforward and easy - I was 59, suffered for about 6 months before diagnosis, started Pred at 15mg, tapered to zero over nearly 3 years and was not aware of any side effects. And the initial relief from the symptoms took about 4 hours and was probably 90%. After 6 months of thinking that I would be on crutches or in a wheelchair by the time I was 60, I was euphoric!

And I would suggest that if you have an understanding GP who allows you to control your dosage and tapering plan and the pred works for you, then maybe not bother a rheumatologist? I was referred to one but the reply came back saying 'textbook PMR, responding to treatment, don't want to see him'!

Good luck.

Wouldlovetorun in reply to alangg2 months ago

Wow! You recovered so quickly.

Thank you for sharing it with me.

Now that you are fully better are you back to pre pmr health?

I'm so pleased for you 😊

alangg in reply to Wouldlovetorun2 months ago

Yes, I would say I am back to full fitness - for my age!

Wouldlovetorun in reply to alangg2 months ago

😊

Flivoless2 months ago

The simple choice is pain or pred.

Wouldlovetorun in reply to Flivoless2 months ago

Well put!That needs to be written out and put on my fridge door!

Thank you ☺️

SharonY2 months ago

I couldn't take steriods and have been treated with methotrexate and actemra..... and am lucky enough to be going into remission. So there are other options but the favoured treatment by drs is steriods. I wish you all the best.

Wouldlovetorun in reply to SharonY2 months ago

That's wonderful news and I hope each day brings more improved health.

Thank you for your best wishes 😊

I am so glad I joined this forum.

Best wishes 💐

PMRnewbie20172 months ago

Welcome fellow Celt. All has been said but none of this is your fault. It's our heritage. The Viking genes. PMR is hardly heard of in Africa or Asia. All I would add is take your dose as early in the morning as you can. Around 2am is best but if you can't bear to wake up then the earlier the better, especially in these early days. In time you will become an expert in treating your PMR and know more than anyone else, because the illness affects us all differently. I am retired now, was a Pharmacist and suspected I had PMR. Once diagnosed at 59yrs and began treatment, I was convinced I would have it licked in under 2 years as per the textbooks. I did myself no favours by reducing too quickly in the initial days. This forum taught me more than I ever knew about Pred and there is no one more knowledgeable than an informed patient. Take 20mg tomorrow morning with something to eat and get your life back xx

Wouldlovetorun in reply to PMRnewbie20172 months ago

So thoughtful of you to write 😊 thank you.

Its been an eye opener reading so many stories. The resolve and positive attitude is so obvious amongst folk on here.

I hope you are feeling much better now.

My BIG DAY is Friday when Hub is home.

Hopefully I won't hear something terrible to put me off 😏

Best wishes 💐

Pixix2 months ago

hello! I’d been on steroids for lung problems, & had put on two stone, as I couldn’t exercise at that time, either. So when PMR came along, I refused. Doctor gently explained there’s no alternative. He was right! I wasn’t going to be bedridden for weeks on end again, I want to live (64 when diagnosed). It was like a miracle…within 72 hours I had some of my life back. Now I can walk, garden, bake, live…but sadly rest is still important, even on the steroids, for me, anyway! I don’t do rest, it’s my four letter word. I have most of the side effects…round face, another stone in weight (but didn’t give up the carbs), pre diabetes (but I did a month on the keto diet, lost a stone & was not longer pre diabetic). There are more, & I have them…but, you know what? When I’m out hiking in the beloved forest we live in, I’m happy & feel I made the right decision. I’m currently decorating our bedroom. Pre PMR it would have taken me 3 days. Now it’s taking 3 weeks! But I’m getting there, & it’s satisfying! I must add that I also have fibromyalgia, vertigo, hypermobility, osteoarthritis, Raynaud’s phenomenon, essential tremor…oh, & some other stuff, too…so you could probably decorate a room in two weeks, once steroids get your PMR under control!! It’s a choice…virtually bedridden, or life & fun, but with a few restrictions & possible side effects! Instead of running a marathon, you may have to start with running half a mile…& not yet…not until the disease is a bit under control! I had 3 urgent referrals to rheumatology recently (not for PMR) & it was nearly a year. But many of us are happy to let our GP (& this forum) cover our PMR. Read the pinned posts, & you will learn a lot!! Good luck with your decision! S x

Wouldlovetorun in reply to Pixix2 months ago

What a wonderful and positive reply. Thank you very much😊

You are amazing!

I am sorry to hear of so many illnesses. You have bucketloads of stamina to get up each morning!

Yes it is a choice. I think I was a bit surprised and upset by the diagnosis. I had thought it was hormonal 😏 when quite obviously I was ill.

We have to make the best of what we have don't we. Acceptance and moving on is something I need to do.

I'm so pleased I joined this forum. So much experience and encouragement on here.

Enjoy the decorating! It will look great once it's done.

Best wishes

Pixix in reply to Wouldlovetorun2 months ago

you know, each time I gather a new disease, I get down. But then I remember mine, so far, don’t come with a terminal diagnosis, so I’m lucky. Some days it feels like I’m dragging myself out of bed at 2am…when in fact it’s 9.30am…but I soak in huge bath we installed last autumn, & then move on!! I do far too much. I don’t rest enough. I onky get 4-5 hours sleep a night due to pain. BUT when I manage a hike in the forest where we live, & I see all the beautiful horses & donkeys etc that surround us, I’m grateful I can walk, albeit not six hours like we used to! I get angry, frustrated & fedup. I truly understand where you’re coming from. But each day I try to do something fun! Todays fun was borrowing next door’s puppy & going for a walk inside the deep, dark woods, watching her jump logs & chase imaginary rabbits etc, such a joy! I’d never heard of PMR, either. So many of us in the same boat here, you just need to accept it & Hope remission comes sooner rather than later!! You can crack it, I know you can!! S x

Pixix in reply to Pixix2 months ago

PS quite right to think it could be menopausal some of it is similar, especially the head sweats & night sweats!! I had to have an early hysterectomy at 40, so had got through that before PMR came along!!

Wouldlovetorun in reply to Pixix2 months ago

You live somewhere beautiful 😊

What a lovely place to be.

Thank you for your tips, advice and thoughtfulness; I really appreciate it.

I'm ok but it was a shock. I asked the gp 3 times is she sure its not the menopause 🤔

I cry sometimes. And I struggle esp at night with the pain. We can't change it can we but we can change how we view it.

Your huge bath sounds majestic.

Best wishes

Pixix in reply to Wouldlovetorun2 months ago

ah…regards crying…the steroids can cause havoc with your emotions, too. Don’t think it’s just you not coping, as these little white pills can cause the water to leak out of your eyes! Yes, I don’t look forward to going to bed. But I determinedly turn off the IPad & when I’m in pain & can’t sleep I try not to fret or to think of what I’m suppose to do the next day, but, instead, I redesign a part of our garden, or I plan holidays, or relive memories of past ones. Rest is not as good as sleep, but it helps. The menopause, yes, some parts are like it, I had a hysterectomy age 40, & had similar trouble as some I have now!! Not at all silly. Yes, change how you view it, remember it’s not for life, & work round it, rather than hit it head on! Ah ha, I see you’ve agreed to start pred, great idea, & yes, I understand waiting until your hubby is home. Good luck. Read this forum, & you won’t go far wrong…look at the FAQs, too! S xx

Wouldlovetorun in reply to Pixix2 months ago

Thank you very much!Good to know steroids makes one emotional 🙃 will warn those nearest and dearest!

I hope you are keeping well and sorry you had the op at 40.

You've been through a lot.

I am v glad of all the help offered me and the kindly way it was given.

Best wishes

Pixix in reply to Wouldlovetorun2 months ago

Yes! Very wise! Through the illness when I have a bad ‘spell’ first thing I do is to warn hubby! I get a bit irritated, & he says I become a control freak & dictate a bit, too. Doesn’t mean you will be like it, but it’s not all the time, probably when I’ve overdone it!! It’s OK re the ‘hysterical’ as we named my hysterectomy! I had multiple infection issues & troubles, so it was one of those ‘about time, too’ operations!! This forum will always have people to guide, advise & support! Best wishes to you, too, S x

Wouldlovetorun in reply to Pixix2 months ago

😊

TheMoaningViolet2 months ago

Hi, you've had a lot of helpful answers, so I just wanted to say that you are not silly for thinking that your symptoms were menopause-related, that's exactly what I thought.

I've been on steroids since December 2019 (my symptoms started in August of the same year) and today is the first day that I am not taking any Prednisolone - it is the beginning of (hopefully) my final taper. I have been very lucky with side effects, so you may be (my mother has diabetes and I was nowhere near it, but I did change my diet).

There is a lot you can do to help yourself and once you take the medication, the hope is that you will feel well enough to do it. Reading posts on this forum will give you a lot of useful information to allow you to take control of the process. I wish you a trouble-free journey; like all calamities, it could be a huge motivator to look after yourself.

Wouldlovetorun in reply to TheMoaningViolet2 months ago

Thank you for writing. Yes this forum has been a great help. There's nothing like experience. I'm glad I'm not the only one that confused pmr with the menopause 😄

Mine started early - mis Dec, was diagnosed a few weeks or so ago and start Pred in 2 days time. My gp has been very supportive and caring.

My mum too has diabetes, as does my youngest son. I need to search posts on here about diet etc and other things.I saw my gp this morning and I have agreed to start Pred on 20 Friday morning once my Hub is home from being away. I just wanted him here incase something happened 🤔🙃.

I would like to thank everyone that's written and supported me. I didn't think I could take the meds as I was so freaked out by the side effects.

💐Thank you dear All x

LMali2 months ago

Take the pred! You will be amazed how quickly you feel better. I was miserable and in pain, really life-affecting, horrible PMR (I also do a physical job on a farm), took 15 mg Pred on a Friday and by Sunday the pain had almost completely vanished. By Monday I was a new woman! Never looked back. Tapering is easy at first then gets tricky at lower doses (I have been down to 3.5 but am back up at 7 now) but that is about careful management, which the PMR pros will advise you on. Right now you need to get rid of the pain and feel human again. IMHO.

Wouldlovetorun in reply to LMali2 months ago

Thank you for your encouraging reply. Pred sounds an amazing medication.

I'm sorry you had to increase again. It seems a delicate operation judging the right tapering.

I feel 90 so to feel a new woman would be wonderful.

Did you go back to farming immediately?

Best wishes🤗

LMali in reply to Wouldlovetorun2 months ago

I never stopped. It was during lockdown 2020 I got diagnosed. I was dragging myself out of bed every day in terrible pain thinking to myself, oh well, I will be back here in 15 hours or so. Talk about wishing your life away. I forced myself through my daily activities (the pain does subside as the day goes on). Then I took Pred. Wow!! I went on holiday the following week and boozed all week. I then took up doing Figure 8 Fitness DVDs! Amazing! However, as others will advise you, the Pred masks the underlying condition so don't be too fooled by it. But why not make the most of being a new woman?! Now I am down to 7 mg and still farming. As the Pred dosage reduced, I did less exercise. I am now quite mindful of my level of activity each day. I have joined a gym because I worry about bone thinning and I think I need to do resistance exercises. ie. weights. I do gym on "light" farm days. Today, though, I did lots of lifting on the farm so haven't been to the gym and am feeling a bit knackered. I suspect the delicious thing about Pred is that it doesn't know you just want to alleviate pain in your shoulders so whatever loveliness it spreads, goes to the whole body. By the way, it is not addictive, in case you were wondering! It was just nice feeling so great! Good luck!! Oh, by the way I did also follow the anti-inflammatory diet but whilst I am sure it was very good for me, it was the Pred which did the trick!

Wouldlovetorun in reply to LMali2 months ago

I can't imagine working on a farm with pmr🫣

I'm so pleased you are found Pred so very helpful.

I'm just trying to not put on weight. I gave up sugar 3.5 years ago but I still need to improve what I eat. I so enjoy Pringles.

Thank you for your replies 🙂

Oh-my2 months ago

I completely get your retinence about taking steroids. I was diagnosed with PMR last November but resisted taking medication until beginning of March because I told myself I could just about manage. By February I had gone rapidly downhill and got myself in a very bad place. Wept tears when I finally made the decision to start taking Pred but I've not looked back. I had also persuaded my GP to let me start on lowest recommended dose of 12.5mg - possibly my second big mistake. I have since moved up to 15mg because of a recent worsening of symptoms.

It's still early days for me but I wish I'd given myself a kick and told myself much earlier - it's quality of life now that counts and also to trust the GP's initial recommondations.

Wouldlovetorun in reply to Oh-my2 months ago

Sweet of you to write- thank you! I too have done a lot of crying. The pain and lack of sleep and the hopelessness of it all😟 and trying to will it away. Daft of me😏Yes quality of life and also those we are closest too.

Its great to hear your story (and everyone here) and hope you continue to improve and get better. Well done for taking the meds🙂

Knit112 months ago

Welcome to the group. I hope you will find a way that fits you to deal with your symptoms.Like you, I was worried about Pred's side effects and promptly refused to take it. When my pain grew unbrarable, I started with Methotrexate, a med typically prescribed for those who can't reduce Pred (due to pain). It helped, but I was still not well enough and able to perform simple tasks like getting up and down the steps. I eventually started with 15 mg Pred and was able to function. I started reducing within a few weeks afterwards (under my rheumy's supervision) and now I am stuck at 3 mg with 20 mg Mthx. I have a beginning of cataract and my bone loss was signifinificant. It might have happened without Pred too; there's no way to know. All I know is that I couldn't leave with the ever increasing pain of PMR and I can't imagine how the inflamation affected my body.

Wouldlovetorun in reply to Knit112 months ago

Thank you for writing to me. Did you take methotrexate instead of Pred because you thought it better and safer? PMR is bad but juggling worries and fears about the meds just adds on another burden.

Did you have a dexa scan? I don't qualify. I hope these trials are bearable for you and not getting you down. And that you make good progress in your recovery 😊

Best wishes x

Knit11 in reply to Wouldlovetorun2 months ago

I started with Mtx because I thought it was safer (well -known side effects that can be closely monitored with periodic blood tests). I didn't stop it when I added the Pred. I suspect the Mtx helped me keep the dose lower. At one point I had to increase it from 15 to 20 mg in order to be able to reduce the Pred further. I had a recent Dexa scan and it showed my bone loss. The amount is greater than the dose of Pred I took would cause. My rheumy said that the loss might be genetic (I feel it is an answer to everything doctors can't explain). My very little cataract corresponds with my age and my ophtomatologist didn't think it is a result of the Pred (15 mg isn't a high dose and I wasn't on it for a considerable amount of time). I mentioned those because Pred could have affected them.

In short. I would have gone on Pred earlier had I started it all over again.

Wouldlovetorun in reply to Knit112 months ago

Thank you for your reply.😊

Do you recommend seeing the optician before starting Pred or as near to starting it?

And the doctor gave you the option to take an alternative medication?

I'm sorry your bone density is reduced. Can things be done to encourage the bones to improve?

Best wishes x

Knit11 in reply to Wouldlovetorun2 months ago

I saw my optician as an annual check up. If you don't suffer from any problems I don't think you need to go (I wouldn't, but I am not a doctor, so maybe ask your caregiver). I have a rheumatologist who listens! He didn't think that Mtx instead of Pred was a great idea but went with it because I adamantly refused the latter, giving him educated reasons. I need to take Aldronate for my bones. I am not happy about that, but the risk of getting a dangerous injury make me do it. My rheumy discussed it with me at length. He had seen patients before this med was available and could attest to his experience without it.

Good luck with your choice and with getting better. Eventually you will!

SandraLinks2 months ago

In the USA, a drug has just been approved for use on PMR that is an interleukin-6 receptor blocker and not a steroid. The name of the drug is Kevzara. You might ask your rheumatologist about it.

PMRproAmbassador in reply to SandraLinks2 months ago

Wouldlovetrun is almost certainly in the UK as they refer to prednisolone - where it isn't approved and to be honest - I doubt it will be any time soon. Biologics are expensive.

SandraLinks in reply to PMRpro2 months ago

Biological are very expensive, but at least they’re starting to look into other resources.

Wouldlovetorun in reply to SandraLinks2 months ago

Thank you! Yes I'm in the UK. Would this new med be an improvement to Pred? Is it a jab?

SandraLinks in reply to Wouldlovetorun2 months ago

I’m not sure. I will try to find out and get back with you.

Wouldlovetorun in reply to SandraLinks2 months ago

🙂

Flutterbies572 months ago

I tried natural things in the beginning , but life wasn’t worth living, so accepted the drugs . Everyone is different so you too can try to get relief other ways . I wish you success and relief from pain .

Wouldlovetorun in reply to Flutterbies572 months ago

Thank you😊I hope to start on Friday morning 🫣

How are you?

clhclh2 months ago

I am the same age as you and diagnosed last December. I also was very reluctant to take prednisone for all the reasons mentioned. The pain of PMR was so severe that I hadn’t been able to get dressed or roll over in bed without crying out for 2 months. I was offered prednisone, but told that I didn’t have to take it if I didn’t want to. After another week of suffering in pain that no pain killer touched, I couldn’t take it anymore and I took the first dose of prednisone. Within one hour, my pain was reduced by at least 50% and the stiffness was melting away. That convinced me. I’m now 95% pain-free on a tapering that has me down to 8 mg a day. I have not gained weight, etc. bone density wasn’t great to begin with but I’m watching it. The worst thing for me was the muscle mass I lost because of inactivity with PMR. I am now able to get back to exercising, bike riding and Pilates though I am not overdoing it. I also have massage therapy and hot epsom salt baths to aid in recovery. It was a shock to me to end up with PMR. I’ve never even heard of it until the doctor diagnosed me. It literally incapacitated me overnight.

Wouldlovetorun in reply to clhclh2 months ago

Oh wow!our pmr histories so similar!That was a very rapid response to the first dose.

That's great you can exercise and return to some normality. I'm concerned I am losing muscle. The massage you have is it done professionally? I've seen a place nearby that does it and did wonder if it would be beneficial.

I was convinced it was the menopause and when the gp said it wasn't I was a taken back. I never expected pmr. I thought I needed hrt.

Thank you for sharing your experience. Hope you continue to improve and get back to your old self.

Best wishes 🙂

PMRproAmbassador in reply to Wouldlovetorun2 months ago

Massage won't help PMR itself - it might help if you have myofascial pain syndrome as part of your PMR as I do. Be prepared to possibly feel worse after a massage session - some people find the pressure on their muscles extremely painful, some find they feel as if they are having a flare afterwards because the massage releases the inflammatory substances in the knots of muscle fibres into the system and they cause inflammation all over like PMR until they are flushed out of your system. It is just a one off though, not every day like PMR. I love a good therapeutic massage from my physiotherapist!!

Wouldlovetorun in reply to PMRpro2 months ago

It sounds like you are benefitting from it and it's helping.

Not sure I'm ready for it🫣the pain isn't ready.

Thank you for writing to me 🙂

clhclh in reply to Wouldlovetorun2 months ago

hi there,

Professional massage therapy. For me, it is very helpful. I also respond well to myofacial release and have regular physio appointments for that. Reformer Pilates has helped keep me moving also.

Hope you figure out what path is best for you!

Hosers22 months ago

Read my profile. It may give you some insight as to possible alternatives and also possible causes of your pain.

Wouldlovetorun in reply to Hosers22 months ago

Yes I will do.

Thank you!

phebamom2 months ago

Good day: I have PMR/GCA for 20/12 years. On prednisone for more than a decade. I suggest starting your prednisone medication as prescribed by your doctor. Here is a link to an article that defines what PMR truly is. : jrheum.org/content/jrheum/4...

If you attempt to get through this without prednisone the inflammation will silently be doing more than just causing pain. The inflammatory response involved with PMR does a lot of internal damage. If you do not treat your PMR and aggressively, it is more likely to become GCA, which is something you do not want. Do not mess around with this. I have been on very high doses, and yes, it is difficult. I am on 5mg. at this time. My rheumatologist told me I will be on 5mg. the rest of my life. My Dexiscan is not the best, but I can not take any medication for osteoporosis as I have other issues besides PMR/GCA. I take care of myself and try to eat a balanced diet. I am not a diabetic. I was certain after 12 plus years of pred that I would be diabetic, but I am not. My blood sugar actually tests a bit low and my A1C, which did go up to 6.5 at high doses of prednisone, is down to 6 at the 5mg. dose. My blood sugar never goes over 100, so so far, so good. I was told by the eye doctor that the cataracts that go with prednisone are a different type than the regular cataracts involved in the aging process. I have cataracts, but according to eye doctor they are caused by aging, not by prednisone. My husband, a perfectly healthy, thin fit 70 year old man, is having cataract surgery on both eyes this summer. He has never taken predisone. I am 68. I was able to postpone cataract surgery for a year by getting glasses last year. The eye doctor said they would buy me a year. They did that. I will probably be having cataract surgery this summer. . The average for cataract surgery is 72. I did gain weight at high doses of prednisone, but lost it when I got down to around 7 mg. a day. I did have moon face and dowager's hump at high doses. All of that went away at a lower dose. Yesterday was a doctor visit day. Between hubby and I, 5 visits in one day. I learned that my severe sleep apnea is being caused mostly by this disease process. The disease attacks the muscles that are in the throat area, making them relax. I strongly suggest taking the prednisone. Do not listen to internet hype that makes it into a monster. I always tell myself to remember what prednisone can do to me, and what prednisone can do for me. Please do not take this illness lightly. One thing I did that really helped with prednisone, especially at high doses, was a low sodium diet.

Wouldlovetorun in reply to phebamom2 months ago

That was very informative and helpful - thank you! It's a bit scary too. I didn't worry about the inflammation 🫣😑

I didn't know the cataracts are shaped differently.

I hope you and your hub get on well with the eye surgery💐

CAN DO FOR ME

CAN DO TO ME

That is a quote worth remembering.

I need to look at diet and other things about taking Pred.

Thank you for your reply. The support on here is brilliant.

Best wishes x

BabyRuby12 months ago

prednisone is a miracle drug. Thank god I could barely walk and in horrible pain without it. Started at 20mg now at 3.5 mg. Had a bad flare once going off too fast. Sure it isn’t something people want to take but I’m normal again on it

I have no side effects except I gained a little water weight from it and when I got to 5mg my adrenals wouldn’t wake up so I was tired all the time but after a couple months I’m not tired anymore. I also tried every anti inflammatory natural supplement on the market….nothing worked. Only prednisone.

Wouldlovetorun in reply to BabyRuby12 months ago

Thank you for writing to me.That's an interesting observation about anti inflammatory supplements.

You have had a rough time with it. I hope you make good progress and wonderful to hear you suffered very little side effects. That's really good to hear 😊

Best wishes x

Umufu2 months ago

Welcome Wouldlovetorun,

Everything has been said so far. All I want to add is, I wish I had found this forum 6 years ago when I developed PMR. I was sure I could to it 'My Way' with alternative treatments and analgesics....until after one year I had a wake up call from my eyes: GCA and 60mg of Pred, along with atrial fibrillation and a Hypertension and the corresponding medication.

If only, yes, but a bit late for that. But getting there slowly, down to 4.5mg and looking forward to my 84th birthday surrounded by 8 grandchildren and 8 great grandchildren who give me lots of reason to continue with prednisolone no matter for how long I need it. Listen to those who have been there and very best of luck and enjoy the moment when you wake up without pain. xx

Wouldlovetorun in reply to Umufu2 months ago

That's sweet of you!

Yes I've decided I'm not improving but getting worse and it isn't going away any time soon.

You sound like a spring chicken and full of joy😊

I hope things have improved for you.

Enjoy those little ones- what a blessing!

LWNE2 months ago

Hello, I also had uveitis before PMR, and the pred DID hasten my cataracts, although they were already forming. My operations on both eyes were very succesful, and im relieved, although the uveitis did flare last year after 2 years of being quiet. I feel my PMR is almost in remission, but I just need to ensure the uveitis is controlled...im currently on 4mg of pred, and hoping to continue tapering - the eye hospital may want me to stay on a very low dose for a while. In terms of PMR - pred was the only way, but I had very few side effects, and have stayed very active throughout. Good luck to you!

Wouldlovetorun2 months ago

Hello and thank you for your reply

I've had uveitis quite a number of times but not for quite a few years now. In both eyes. My left eye has the beginnings of a cataract.

That is useful to know that pred might cause uveitis even though its not going into the eyes. I learnt today that wearing sunglasses is important with cataracts. I needed sunglasses with uveitis but was never told about the cataract.

I hope the complications of tapering pred and juggling uveitis works out well. It's rather difficult isn't it.

That's such good news about v little side effects and keeping active. There have been many positive comments on here about pred.

You had to have both eyes operated on. 💐

I'm so pleased its been successful. You have been going through a lot with tye eyes and pmr.

Best wishes

Persevere992 months ago

Hi wouldlovetorun

Some years back a Medichecks showed Crp slightly high at 12 (<5) Unsure why.

Looked at ways of bringing it down without meds and after trying this and that, finally succeeded with devil’s claw.

Crp way at the bottom of the scale now at 1. I take 1 capsule a day.

I’m a lifelong high level exerciser and not on any meds at all as I believe that lifestyle is the key.

All the best with your journey back to health!

Persevere

HeronNS in reply to Persevere992 months ago

Did you have any symptoms of illness at that time?

Persevere99 in reply to HeronNS2 months ago

Was a bit fatigued and was wondering where it came from, so did a Medichecks, which showed the high CrP

I’ve taken devil’s claw for 5 years now and it has really helped

Persevere

HeronNS in reply to Persevere992 months ago

So, to be clear, you didn't have PMR?

Wouldlovetorun in reply to Persevere992 months ago

Thank you for taking time to reply.

I am so pleased you found something to help. Sounds a brilliant supplement. I've never heard of it so googled it. Was it pmr you had?

Best wishes

🤗

Persevere99 in reply to Wouldlovetorun2 months ago

Not Pmr, but was not exercising at my former level, so did a Medichecks to see if any thing showed up - and Crp did.

Now, back to my running and swimming!

Hope you find your own answer

Persevere99

Wouldlovetorun in reply to Persevere992 months ago

Thank you! 😊 Running and swimming sounds great.

Best wishes 🤗

Seekingasolution2 months ago

I wrote a longer reply yesterday which seems to have disappeared.. but in short this time. . Whilst prednisolone seems to be the magic bullet we all need, my own journey tapering is being considerably helped by switching to a plant based diet. It’s not for everyone for a variety of reasons but it’s made a huge difference to me.

PMRproAmbassador in reply to Seekingasolution2 months ago

By plant based do you mean vegan? Or just relatively far less animal products?

Seekingasolution in reply to PMRpro2 months ago

not totally strictly vegan - I find that’s a bit too tricky especially when say visiting friends but most of the time I can avoid animal products completely. I can do eg a starter plate of beetroot, orange, salad leaves, pine nuts and blob on some mild goats cheese for those that want it. Bacon bits and Parmesan served separately on minestrone. Whilst I haven’t found any research that supports being strictly vegan in the treatment of eg AI diseases, or any other for that matter, there are plenty of advocates for eating 10 portions of fruit/veg/nuts/spices per day ( such as Prof Tim Spector) and by the time you’ve done that there’s not much room for anything else. I very much hope someone will do further research re wholefood, cholesterol, alcohol consumption, weight etc etc. Lifestyle choices must make a difference although I think it must be hard to control stress which could also be a factor ( and genetics and pollution and…) . But it could be an important difference to redress the balance for a percentage of the population and AI disease and cancer are increasing especially as we age. That’s why I’m trying to see if it can help me ( and maybe others too )

Seekingasolution in reply to Seekingasolution2 months ago

oh and I don’t find a deviation by eating a piece of steamed salmon for example makes any difference. Eating a Cadburys Easter egg does though !

PMRproAmbassador in reply to Seekingasolution2 months ago

Oh I manage 10 without blinking when you include herbs and spices. The 30 different things a week is easy too I realised with herbs and spices included!

There was a study probably 20-odd years ago in RA patients - a totally vegan diet resulted in a reduction in joint pain in half of patients but even a tiny portion of any animal protein was too much. The other half it made no difference to at all.

The trouble is, it is hard to get volunteers to do controlled studies for more than a few days and observational studies are always fraught - I can't remember what I ate 3 days ago never mind 3 weeks ago!

Seekingasolution in reply to PMRpro2 months ago

I remember you saying but I’d happily be a volunteer ..as long as wine was included 😃

PMRproAmbassador in reply to Seekingasolution2 months ago

Trouble is - that might not be very ethical ...

Seekingasolution in reply to PMRpro2 months ago

I read that first as you could eat 10 Easter eggs without blinking 🤭

PMRproAmbassador in reply to Seekingasolution2 months ago

Oh grief no!!!!!

Wouldlovetorun in reply to Seekingasolution2 months ago

That's good of you to write twice! Thank you. It sounds like you have got a good plan that helps you. From the very little I've gleaned, starting is much easier (once the tough decision has been made) than finishing.

I'm pleased for you and hope you reach zero pred soon😊

PMRGCAuk

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