How long does it take once one starts Pred before... - PMRGCAuk

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How long does it take once one starts Pred before being back to normal? How long are folk off of work?

Wouldlovetorun profile image
118 Replies

I thought once I start Pred (big day tomorrow) I would feel wonderful 🙃 and after a couple of more weeks be back to doing my physical job.

Is this a ridiculous idea?

118 Replies
DorsetLady profile image
DorsetLadyPMRGCAuk volunteer

Maybe more over-optimistic than ridiculous 😳…..but don’t hold your breath.

You need to be realistic- and not try and run (or in your mind-gallop) before you can walk..

small steps -and you’ll get there…

more trotting around the paddock than jumping around Aintree in the Grand National.

Wouldlovetorun profile image
Wouldlovetorun in reply to DorsetLady

I must have misunderstood my gp when she said about getting back to work. I thought she meant sooner rather than later. Thank you for your speedy reply.

X

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to Wouldlovetorun

Others who still work will be along with their stories in due course, but a physical job is going to be difficult..

Don’t think your GP has much understanding of PMR - it doesn’t miraculously go away just because you are on steroids…they only address part of it - the inflammation. The underlying illness is still there, chugging away happily. ..and you need to manage it…

Wouldlovetorun profile image
Wouldlovetorun in reply to DorsetLady

Thank you!How do I manage it?

Best wishes

X

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to Wouldlovetorun

Not sure if I sent this before -but have a read through -and in particular one of the links about pacing yourself -

healthunlocked.com/pmrgcauk...

PS -forgot to say -when you do think about returning to work -you need to get them on side -have a look at this -

citizensadvice.org.uk/work/...

Wouldlovetorun profile image
Wouldlovetorun in reply to DorsetLady

Thank you! Will have a look now 🤗

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to Wouldlovetorun

just added another link about work …when you return…

Wouldlovetorun profile image
Wouldlovetorun in reply to DorsetLady

Thank you!Great help🙂

🤗

Bennijax profile image
Bennijax in reply to DorsetLady

what is the underlying illness Dorset Lady? I thought it was the inflammation.

PMRpro profile image
PMRproAmbassador in reply to Bennijax

No - an autoimmune disorder that is the thing that creates the inflammation, it doesn't come from nowhere

Bennijax profile image
Bennijax in reply to PMRpro

am guessing the autoimmune disease can be a number of different things, have different names, come from different or overlapping origins?

PMRpro profile image
PMRproAmbassador in reply to Bennijax

Not even that simple really, SOMETHING upsets the immune system and it can't recognise body as self so turns on it and attacks various tissues. The label you get tends to depend on the symptoms and they depend on what part of the body is involved, There's no cure - so you use the drug that works best for what's affected and the person.

Bennijax profile image
Bennijax in reply to PMRpro

I keep forgetting this. I feel terribly sad.

PMRpro profile image
PMRproAmbassador in reply to Bennijax

Why?

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to Bennijax

PMRpro has replied….

PMRpro profile image
PMRproAmbassador in reply to Wouldlovetorun

No - many doctors think once you are on pred you are back to normal and can do everything you did before. Not always the case.

Wouldlovetorun profile image
Wouldlovetorun in reply to PMRpro

I will have to explain to gp and hope she continues to write a sick note.X

PMRpro profile image
PMRproAmbassador in reply to Wouldlovetorun

Patience - and see how you get on. Cross bridges when you get to them.

Wouldlovetorun profile image
Wouldlovetorun in reply to PMRpro

😊wise wordsThank you x

Bobbury profile image
Bobbury in reply to Wouldlovetorun

I would concur with PMR pro and a bit more! A long haul for some including me. Take you time and listen to your body!

PMRpro profile image
PMRproAmbassador

How long is a piece of string? Everyone is different, Some respond to the pred in hours and fully, some take much longer and are never entirely pain-free. Or any mixture in between.

It depends on the dose you are given being enough for YOU and YOUR PMR. If the dose is too low - it won't work or will only work slowly. It has to be enough at any stage, even at the start when they start with a higher dose than they expect you to need longer term.

And it also depends a lot on what you do. I worked all through - but all I had to do was fall out of bed and stagger to my computer. Someone with a physical job or a hard commute won't have it as easy. Being on pred is not the only aspect of management of PMR or a free pass to go back to your previous level of activity. The pred only manages the inflammation, it has no effect on the actual disease process that underlies it. That continues in the background attacking the tissues and causing a fluey feeling and for some people that is considerable. Pred itself is a powerful medication and some people suffer from its effects. It isn't a case of taking a pill and back to normal. It takes time, patience and adaptation.

Wouldlovetorun profile image
Wouldlovetorun

Thank you!

I think I had interpreted feeling so much better once one begins Pred that it would be just a short time before a return to work.

I can't imagine feeling well enough.

I do a physical job and on my feet 8-4. It seems too much to even think about.

Yes the inflammation.

What a nasty disease it is.

So I will still have pain, stiffness and weakness?

I'm sorry I sound so ignorant 🫣

Best wishes

X

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to Wouldlovetorun

Well hopefully you shouldn’t have the pain and stiffness -the steroids (by controlling the inflammation) should stop that. But you may still feel some muscle weakness, but not as much as pre diagnosis. You can exercise, but gently and build up slowly to improve muscles.

Wouldlovetorun profile image
Wouldlovetorun in reply to DorsetLady

Thank you! I appreciate all the help and support.

Best wishes

X

SnazzyD profile image
SnazzyD

With the variation in experiences it would be like pinning the tail on the donkey to work out what your experience will be. On the whole the main principles are. 1.Keep an open mind by not imposing rigid goals and expectations to avoid customer disappointment.

2. Remember that Pred cures nothing but it does stop damage from inflammation and lessen the possibility of GCA.

3. Don’t listen to the Pred telling you that you have lots of energy.

4. It takes longer than we’d all like because most of us start off in DL’s race at Aintree and then pulling up lame.

Wouldlovetorun profile image
Wouldlovetorun in reply to SnazzyD

😁that made me smile! I think I would be guilty of all 4.Thank you for replying 🙂

X

Kendrew profile image
Kendrew

Hi there,

Perhaps read my bio?...it documents my battle with returning to work as a teacher in a primary school working in the nursery class.

Wouldlovetorun profile image
Wouldlovetorun in reply to Kendrew

Thank you! I have read quite a bit of it and hope to finish the rest tomorrow. You have had a difficult time. Hope you are feeling much better. X

Kendrew profile image
Kendrew in reply to Wouldlovetorun

Sorry....it is a bit long!My life with PMR has definitely not been as challenging as it has been for many others though and my 'battles' have really been more about acceptance and adaptation.

- Accepting that I had to live my life according to a new 'normal' with a different set of more realistic expectations, that for a while, were going to be governed by certain physical and medical constraints.

- Adapting to that new 'normal' and the changes I was having to make in order to stay well and manage both the condition and any emerging side effects from the medication as effectively as possible.

Wouldlovetorun profile image
Wouldlovetorun in reply to Kendrew

Thank you!

Good morning 🙂

Its good of you to write to me.

I need to learn accepting and adapting.

I am eating low carb. My body won't let me do v much and I'm not pushing to try because I feel such a wreck. I've bought shoes I can put on easily with a long handled shoe horn. I don't have my daily baths anymore. Are these the changes you are referring to? How to manage the emerging side effects? I've a long way to go.

I've taken my first 20mg ten mins ago. Doctor said to stay upright but not sure how long for. I'm sat up in bed with pillows and desperate to nod off.

Thank you again and hope things improve for you.

🤗

sampete profile image
sampete in reply to Wouldlovetorun

I maybe wrong and if I am I will stand corrected, I have been taking Pred for nearly 3 years but I have never heard anyone say you have to stay upright after taking it. The only thing I have to stay upright for is Alendronic Acid.

Wouldlovetorun profile image
Wouldlovetorun in reply to sampete

Oooo thank you! It's just about an hour and I so need to lay down.

tempusfugi profile image
tempusfugi in reply to sampete

I mean what about all those who take their Pred at 2 am etc!! Bet they don't sit upright for the rest of the night🙃

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to Wouldlovetorun

Rubbish - GP getting confused with Alendronic Acid

Meezamom profile image
Meezamom in reply to Wouldlovetorun

I would back up the 'stay upright' advice. I didn't have any gastric issues before Pred, but now I have severe gastritis. The Pred took 8 months to give me tummy issues and I was taking it with Omeprazole and food. Of the (many🙄) things I wish I'd known with PMR, one is the effect it would have on my tummy. I now force myself to sit quietly after taking it for an hour and it really helps me. Some people are lucky and can manage it effectively with just a yoghurt and a drink, I can't. You may be fine, but its just another thing to bear in mind 🙁 Good luck!

Kendrew profile image
Kendrew in reply to Wouldlovetorun

Yes, most definitely. For myself, it involved changing my expectations for a while, so for instance....although I couldn't manage a days walking, I could manage an hours walk around the local countryside....but even this began with only a short 10min walk around the meadow opposite my house before gradually building it up.

I'm too tired to go out in an evening (my battery is beginning to run on empty by then!) but I can still enjoy lunch out somewhere nice.

Unfortunately, I had to give up work but the improvements in my health are more than worth it.

My diet has changed...low (but not no) carb. If you can maintain a healthy weight then you're minimising the risk of developing steroid related diabetes, hypertension, along with a few other potential side effects.

Don't forget that you won't experience all of the possible side effects...if any.....and most of them can usually be 'managed' quite effectively for most people. That said, there will always be some though, for whom the steroids may be more troublesome.

Don't worry about the side effects. Deal with things on a day to day basis and if something emerges, then you can address it.

123-go profile image
123-go

Your pain, stiffness and weakness will improve but you will need to listen to your own body and be honest with yourself regarding how you feel. What you imagine yourself doing while you’re sitting in a comfortable chair or snug in bed may very well paint a totally different picture when you are actually at work and doing the job.

I was retired before PMR hit but I remember thinking, once the absolutely incapacitating pain and fatigue had reduced, that I ‘had’ to get back to normal. One evening , early on after diagnosis, I insisted on preparing and cooking the evening meal. It wasn’t long before I was struggling to stand and I had no choice but to stagger to my bed. After several attempts on subsequent days to complete the task I had to admit to myself that wanting to do something and actually carrying out the task were two very different things. Supermarket shopping was also a trial to begin with. My husband would come with me and I frequently abandoned him with the trolley mid-shop because I’d hit ‘the brick wall’.

So, pacing and resting are two of the most important things you can do for yourself in the earlier stages of the PMR journey. Be patient 😉.

PMRpro profile image
PMRproAmbassador in reply to 123-go

Good place to add this link then:

healthunlocked.com/pmrgcauk......

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to PMRpro

It’s a link in my intro post….. 123-go

PMRpro profile image
PMRproAmbassador in reply to DorsetLady

Can't say it too many times ...

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to PMRpro

That’s very true…..😊

Wouldlovetorun profile image
Wouldlovetorun in reply to PMRpro

Thank you! Will have a read 🙂X

Bridge31 profile image
Bridge31 in reply to PMRpro

The link to the Sjögren's sufferers post about fatigue was so interesting and comprehensive.

Tired now !!!

Wouldlovetorun profile image
Wouldlovetorun in reply to 123-go

😘thank you very much.

I really appreciate the time and trouble in writing to me.

I'm taking it in.

And I reread these posts.

Hope you're doing so much better now.

🤗

123-go profile image
123-go in reply to Wouldlovetorun

No trouble at all. The scope in personal experience is broad as you will have gathered 🙂. I’m pleased that you found this forum where people genuinely understand and where no question or concern is considered trivial. Please give us an update as you go forward….your own experience will help others.

Wouldlovetorun profile image
Wouldlovetorun in reply to 123-go

😘

Dochaz profile image
Dochaz in reply to Wouldlovetorun

Re-reading all the links and FAQs is very useful a few months in. There's a lot of info to take in at the start and some things make more sense when you've had a few months living with the condition. Best of luck to you ☘

Wouldlovetorun profile image
Wouldlovetorun in reply to Dochaz

Thank you for taking time to write to me.

I'm going to have a break today from info and just spend some time with my Hub. He's been away a week.

☺️

Francesbarbara profile image
Francesbarbara in reply to 123-go

One of the best and most reassuring things about this forum is that you have the comfort of knowing you are not the only one finding yourself in some scary situations. I recall once in the supermarket feeling so fatigued that I wanted to lie down on the floor there and then and I didn't care what anyone thought. My husband managed to get me out to the car and the relief was enormous. That is two years ago and fortunately with a slow taper I am in a much better place.

Wouldlovetorun profile image
Wouldlovetorun in reply to Francesbarbara

Thank you for writing to me.

😊

Imagine the scene in the supermarket if you had laid down 😄😁

So pleased you are in a better place now with pmr.

Best wishes

X

123-go profile image
123-go in reply to Francesbarbara

I know that feeling well. I’ve previously told the story of being in the fashion department of a large store and grabbing something off a clothes rail so I could go into the changing room and sit down. We become very inventive. I feel a poem coming on 🤔.

Kendrew profile image
Kendrew in reply to 123-go

😂😂😂😂😂😂

piglette profile image
piglette

PMR is life changing and PMR has the upper hand, so you have to treat it well or it will come back and bite you. The mantra is rest, rest, rest. The steroids help alleviate the pain, but they do not cure the illness. Take life a little easier, pamper yourself and learn to say No if you are not up to doing things.

Wouldlovetorun profile image
Wouldlovetorun in reply to piglette

Thank you for writing ☺️

Good advice and I will try and follow it.

Best wishes

X

sdowney717 profile image
sdowney717

PMR is often disabling even being treated is my impressions. Especially if your low on prednisone. I do ok on 10mg and 10mg morning and evening. But cutting back a morning dose to 5 and by the second day I was an invalid again, hard to even walk up stairs. then after going back to 20 a day, it took days just to get back to somewhat of a normal life.

Wouldlovetorun profile image
Wouldlovetorun in reply to sdowney717

Thank you for writing to me.

Isn't it a difficult disease to manage🙁 and these changes on mg can make such an impact on the quality of life.

Its not straight forward.

I hope you are having a good day,

pain-free and mobile.

Best wishes

😊

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to sdowney717

if you are going to split dose - recommendation is 2/3rds am; 1/3rd evening… but would say your downfall was cutting one dose from 10mg to 5mg - too big. Overall daily dose reduced by 25% …. From 20mg, some struggle with a 2.5mg reduction, let alone 5mg…so when you try again, a smaller reduction.

PMRpro profile image
PMRproAmbassador in reply to sdowney717

Whatever doctors may suggest you CANNOT reduce the pred dose in such big steps - some may manage 2.5mg at a time but many must go in smaller steps, 1mg at a time. No reduction should be more than 10% of the dose - and when you split, it may be 10% of the part of the dose you are changing.

Wouldlovetorun profile image
Wouldlovetorun in reply to PMRpro

Yes that would be a mistake to do. Little by little.

🤗

Louisa1840 profile image
Louisa1840

Oh Wouldloveto run - how we all feel for you and resonate with your desire of being back to normal. After nearly six years (and many have been a lot longer) of this wretched disease, I feel as though I am back at the beginning. I am so stiff I resemble a mobile ironing board. I have limited energy (really only first thing in the morning for a couple of hours). I keep pushing my prednisone up and up to try & cope.

I had to retire from my daily job of performing a convict woman's story to tourists 3 years ago. I miss it terribly but know I couldn't do it now, especially as it was outside and we have winter approaching down in Tasmania!

It may be that for you, you are one of the lucky ones who get over PMR quickly? I do hope so. Remember we are all different and that rest, rest and more rest is the mantra. PMR will go when it's ready - and I am telling myself this!!!

Take care. Go Well and practice gratitude for all the blessings you have in your life because I am sure there are many? Not least would be finding this wonderful site with all the support, advice and company on here...........

Wouldlovetorun profile image
Wouldlovetorun in reply to Louisa1840

Thank you for taking time to write to me. Everyone is so positive and yet have had big trials themselves.

I hope you feel very much better soon💐

Gratitude is very important. It can lift a person to a different place in their minds and emotions.

I'm sorry about your job. How disappointing and awful for you.

Sending very best wishes

X

Louisa1840 profile image
Louisa1840 in reply to Wouldlovetorun

So True! It's okay about my job. I'm 73 and it had to end sometime!!!

We're all in this together and, knowing that, really helps

Sending Love and the BEST vibes back to you!!!

Wouldlovetorun profile image
Wouldlovetorun in reply to Louisa1840

😘

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to Louisa1840

Sorry to hear you are struggling so much - again. Rebound from what happened a few months ago do you think? Did you manage to get counselling? If so, has it helped, if not maybe should be a consideration. Or do you’d think it’s adrenals spluttering? 🌸

Louisa1840 profile image
Louisa1840 in reply to DorsetLady

Dear DL. I too wonder about the repercussions of my Grandson' s suicide. It doesn't go away but is an undercurrent of sadness.I haven't had counselling but feel I'm dealing with it okay.

As I'm back on the 12-15 mg of pred, I doubt it's adrenals sputtering....?

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to Louisa1840

Okay - well as we [you know who] both said, it can take months before it really hits, so even now counselling may help. But of course it’s up to you, I didn’t feel the need, but different circumstances. .. and yes agree about adrenals- forgot you were as high as you are.

Take care 🌸

Wouldlovetorun profile image
Wouldlovetorun in reply to Louisa1840

💐💐💐I'm so very sorry x

Telian profile image
Telian in reply to Louisa1840

I am so so sorry for your loss 💐

PMRpro profile image
PMRproAmbassador in reply to Louisa1840

"feel I'm dealing with it okay."

I thought so too - but the counselling helped such a lot.

Suetum profile image
Suetum

perhaps discuss with work about a phased return so that you can gradually build up.

Wouldlovetorun profile image
Wouldlovetorun in reply to Suetum

Thank you for thinking of me.

If I'm able to return to work I would try a phased return🙂 but I'm not going to stress myself as I do overthink everything 🤔

I need to stop worrying 😏 and put into practice all these helpful things I have learnt from here.

Hope you are well and having a good day so far.

Best wishes

☺️

Theadmiral profile image
Theadmiral

I was started on 20mg and felt amazingly back to normal the next day. It was a complete new lease of life. Maybe your dosage is insufficient to give you relief.

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to Theadmiral

Poster only started today….

Wouldlovetorun profile image
Wouldlovetorun in reply to DorsetLady

Yes I took them 15 mins ago.

I can't brush my hair so I'm not ready to even think about work.

I told the GP about arthritis in my thumb going down to the wrist but she didn't say much. But im right handed and can't hold a pen easily or a cup. Is this part of pmr?

Thank you all☺️

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to Wouldlovetorun

Could be…see if the Pred help it, if not then maybe try topical gel…

Wouldlovetorun profile image
Wouldlovetorun in reply to DorsetLady

Thank you! ☺️

tempusfugi profile image
tempusfugi in reply to Wouldlovetorun

Hi Wouldlovetorun, (and you will do again, I'm sure, one day, so keep telling yourself that, but remember to take things day by day and treat your poor body very gently). Gosh! I sound like an old hand and I'm certainly not that (PMR diagnosed a year ago), it's simply stuff I've learned from everyone here on this excellent forum.

And talking about hands, a few months into my PMR journey, I've developed pins and needles in both hands, but more in my right, plus pain in my wrists. I am aware of this all the time because now the pins and needles never go away. The worst of it is at night. I wake up with quite a bit of pain in the arm of whichever side I've been sleeping on. It does go away, if I move the arm around or shake it, and I'm not getting it every night, thank goodness, but it is making think that I don't want to go to bed sometimes. I start off by sleeping on my back, hoping that I won't move but inevitably one does. I am also taking a paracetamol before going to bed now. Anyway, just thought I'd mention it because I'm sure it's all connected to PMR. My rheumie said I might have mild carpal tunnel syndrome, btw.

Wouldlovetorun profile image
Wouldlovetorun in reply to tempusfugi

Thanks for your reply 😊

I hope you are managing the bad nights with the pain, and pins and needles. It's probably not recommended but I have lots of support in bed to try and get comfy as possible and use a heat pad. I've a V cushion that's great for semi sitting and in the night supporting painful arms. The pillows do get moved about. Hub bought me a knee pillow which helps the legs too.

Thank you for your wise words on Rest and Care for my body. If I don't remember anything else from this forum I don't think I can forget Rest! It's a word that is used regularly.

Hope you had a better night.

Enjoy your weekend.

X

Lclmlbls profile image
Lclmlbls

It is possible you may be able to return to work after 2 weeks but take it slowly. Would it be possible to do a phased return? My symptoms were gone within a week but a ten minute low level exercise workout resulted in needing to lie down for two hours and a return of aches and pains for two days. Don’t do too much too soon.

Wouldlovetorun profile image
Wouldlovetorun in reply to Lclmlbls

Thank you for writing to me.

My job is too physical and k feel miles away from even thinking about it.

My hubby says One day at a time...

Best wishes

🙂

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to Wouldlovetorun

Listen to your hubby😊

Wouldlovetorun profile image
Wouldlovetorun in reply to DorsetLady

Lol! His reply would be First time ever🫣

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to Wouldlovetorun

Thought that as I was typing 😳

Wouldlovetorun profile image
Wouldlovetorun in reply to DorsetLady

Haha

Headwood profile image
Headwood

It worked like magic for me. Three days and I was at full speed again. So good luck. I wish you the same.

But… of course you then have to reduce, deal with any side effects and hope one day to be free. It is only the beginning of a journey.

Wouldlovetorun profile image
Wouldlovetorun in reply to Headwood

Thank you! You did so well on the meds. That's impressive ☺️

Headwood profile image
Headwood in reply to Wouldlovetorun

hurdles along the way. But the first weeks were brilliant.

Wouldlovetorun profile image
Wouldlovetorun in reply to Headwood

That's encouraging and must have lifted your spirits too.

Burroughs123 profile image
Burroughs123

When I was first diagnosed it was at the beginning of lockdown, so as a part-time lecturer I wasn’t commuting to work as we taught online. I was very grateful that I wasn’t driving the 50 min to work and back twice a week - one of the only positives to being in lockdown. At that starting point in my PMR journey on 15mg I felt exhausted and terrified, but not particularly in pain once the pred had kicked in after a week or so (I’m a slow responder). I managed the online teaching fairly well but was totally knackered afterwards. When we got back to face to face teaching, I was on a slightly lower dose and felt more “energetic” and more on top of my condition. The driving was ok too. Since then I have continued to teach and commute. Some weeks I am completely wiped out and others I am fine. I have two very active teenagers who rely on Mum’s taxi service to get to a variety of sports and social activities, a dog to walk twice a day and I have mostly managed to get a weekly jog in and/or a gentle visit to the gym… I say all of this acknowledging that mine is not a physical job and is part time. Your’s isn’t. My bosses were brilliant and very understanding right from the start. I directed them to PMRGCAuk’s website and discussed the condition with them. I also spoke to my close colleagues who were similarly sympathetic and supportive. I have been incredibly lucky. Talking to them and getting them to appreciate my situation and the condition early was definitely the best thing I did. I hope that you can negotiate some time for initial healing and getting both physically and mentally stronger; also that your bosses are sympathetic and might be able to find you something less physically impactful to do. You don’t always feel like you do right now, but you do have to continually give the disease the respect it insists on. If you push too hard it’ll push back. Yet if I don’t do any physical activity, I actually feel more achy. Finding the balance is key. Good luck x

Wouldlovetorun profile image
Wouldlovetorun in reply to Burroughs123

Just rereading messages

You managed so well. What a busy life with work and family life.

You must have felt overwhelmed with it all.

That's great to hear you can walk a walk and go to the gym and jog. It must be worrying the first time you tried. I'm hoping to go for a five min walk at v slow speed this afternoon out in the fresh air. I can't imagine running for a very long time.

Hope you're having a great weekend. And it's April😀

Best wishes

X

Flivoless profile image
Flivoless

Yep.

Wouldlovetorun profile image
Wouldlovetorun

Thank you for writing to me. You have managed so well to do all that you do. That was a good idea to share with your employer and colleagues this forum. It has enabled them to help you. I would never have thought to do that. Are you taking a low dose now? Hope you continue to live well and make progress with pmr. 🤗

Pixix profile image
Pixix

Took 4 days until I felt a miracle had occurred! Not day one! I progressed to taking my pred between 2 & 3 am, but I’m always awake around then, so easier for me! I worked with fibromyalgia, full time, galloping round Europe. It was very hard. I progressed to part time, but then got made redundant with a huge payoff (worked for company for 22 years)…you never know what’s in the future, so try & accept not fighting it today, & save that for another day! You’re already learning so much from this forum! Rest for now, & read…but don’t get too depressed…those who are having no problems don’t tend to post, & there are lots of successful PMR & GCA stories out there!! S x PS no need to reply, save your energy!!

Wouldlovetorun profile image
Wouldlovetorun in reply to Pixix

Thank you🤗

Gp thought 3-4 days up to a couple of weeks. I did do some crying but I don't think I'm depressed.

This illness changes the whole of one's life. It affects our loved ones.

Its a difficult time and accepting the bigger picture is a bit overwhelming sometimes too.

Best wishes

X

Raven1955 profile image
Raven1955 in reply to Wouldlovetorun

I was diagnosed 6+ years ago at age 61. My job is/was very physical at a contractor supply business, loading/lifting/delivering pipe, pumps, culvert, tanks and such things. Before getting on prednisone I was fighting just to get out of bed and work was total torture. Making deliveries required getting out of the vehicle every 15-20 minutes because just the task of sitting behind the steering wheel would get too painful and I'd have to get out to stretch and move around a bit before continuing. Prednisone was a godsend but I learned quickly that one doesn't just dive back into the work and everything is like it was. I was able to do most of what I had been doing but I had to slow down and do my work at very carefully measured rate. My endurance wasn't nearly what it had been and recovery time was measured in hours instead of minutes if I pushed it too hard. After 2 major flare ups in the first 2 years, I finally with the help of this forum learned to very carefully pay attention to my body and to slow my reduction schedule of prednisone if I wanted to continue working.

I could go on forever but I'll spare you that. My biggest side effect has been the loss of much of my endurance and muscle wasting. I'm the rare case where weight gain from prednisone was never an issue for me. Instead, over the years I think both due to age, PMR and prednisone I dropped weight from 225 pounds to my current weight of 175 where I've stayed for the last 2+ years. It has been very difficult for me to keep in shape for my physical work. Thankfully over the 6 years I've been gradually able to shift from doing just the physical part to today where 90% of my work is now related to sales and customer service. I'm the "old guy" they come to that has the lifetime of information. Kind of feels good actually haha.

You are just barely getting started on this journey. Focus on dealing with the PMR and get to know your friend, Prednisone. And above all, learn to carefully listen to what your body is telling you. I would encourage you that it definitely is possible to continue a physical occupation but I won't say that it's easy. Far from it but it can be done.

This site saved me when well intentioned GP's and rheumies were causing me as many problems as they solved. I will always be grateful to PMRpro and many others here for their advise and opinions. I am currently at 2 mg of pred and really don't concern myself about the reduction rate anymore. Taking the lowest EFFECTIVE dose is what matters. It isn't a race to get to zero with prednisone. Try to get off it too fast and I guarantee that you won't continue to work. I likely added years to how long I've taken pred because I slowed my reduction schedule down so extremely but by doing that I was able to keep working. There will be tradeoffs. I wish you success.

PMRpro profile image
PMRproAmbassador in reply to Raven1955

Brilliant post - thank you!

Wouldlovetorun profile image
Wouldlovetorun in reply to Raven1955

Thank you for writing to me 😊

What a trial you have had. You did so well persevering with work and adjusting how you managed it. Its all new. I'm pleased you have a job now that's kinder to you.

Isn't it odd that gp and rheumy causing problems? I was telling my Hub how valuable the experiences of folk on this forum is.

Hope you are having a good week 🙂

🤗

sdowney717 profile image
sdowney717 in reply to Wouldlovetorun

MY doctor started me on 30mg prednisone, while it worked it spike my glucose close to 400. I immediately reduced to 20 a day in am, then 10 and 10 split dose. 20 works. I felt great pain relief on the following day, and by the 3rd day was near normal functioning. Prior to getting diagnosed with PMR, I has steadily suffered worse and worse since early DEC 2022. Was handled with Ibuprofen which actually still helps a lot. I got into mid February and it just got to be too much to handle, I was taking 3 grams Ibuprofen per day, so made an appointment to see doctor. All tests including joint x-rays negative except my CRP was 103. That and the bilateral shoulder and hip pain, doc told me it was PMR, I had been thinking arthritis. HE was originally trying to tell me I had osteo arthritis, not RA, but I said it hit me sudden and had no joint problems before Dec 2022. The negative findings on joint Xrays also told us it was not OA.

Wouldlovetorun profile image
Wouldlovetorun in reply to sdowney717

Oh wow! The gp was on to it immediately! That was great to get started on meds so quickly.

How are you feeling now?

Thank you for writing to me. I appreciate it very much.

Best wishes

🤗

LMali profile image
LMali

You might be lucky like me . . . pred kicks in quickly and you actually feel better than before. In which case you can get back to work (I presume you actually want to go back to work!). Just note the warning about masking and not overdoing it. Good luck!!

Wouldlovetorun profile image
Wouldlovetorun in reply to LMali

Hello! Thank you for writing to me.

I love working and feel I also need human interaction so its hard being ill for that reason too. Its a bit lonely.

I read your message quickly yesterday and the idea of pred masking...its true and the pmr is still there doing its thing. I need to keep this in mind.

So pleased pred picked you up on your feet quickly and quality of life improved. What a blessing.

Hope you're having a lovely Saturday 😊

Best wishes

🤗

HalleysComet profile image
HalleysComet

The pain subsides on Prednisolone, often quite quickly. That makes you feel so much better.

It is often replaced by fatigue. I suffered from a lot of mental confusion and would never have been able to do a job requiring concentration or very focussed work.

Things improve as the tapering progresses, but that is not a sprint. You need to listen to your body.

I think a conversation with the HR folks at your place of work would be in order, and get as much medical info on PMR to them before the meeting. They are required by law to make life easier for disabled people in their employ. Get them up to speed on the illness.

Wouldlovetorun profile image
Wouldlovetorun in reply to HalleysComet

Thank you for writing to me. I've been supported and helped so much by folk on here😊

Great advice about work.

Hope you are well and not fatigued now. It must have been very upsetting to have the confusion 💐. I hope this has gone now.

Best wishes

🤗

Missus835 profile image
Missus835

Love your attitude - very much over optimistic as it is. With PMR and Pred a good attitude goes a long way. Listen to your body. Quality of life is extremely important and don't let your GP talk you into reducing to 0 mg as fast as possible. It is not a race. Prednisone helped me within 24 hrs. that is at 20 mg. Prior to that, completely disfunctional for 5 months. Diagnosis was Jan. 2022. Still on the Pred, but tapering very slowly. Everyone is different, but you will find that, in general, this is how things go and not to "rain on your parade" 2-3 years of PMR is not unrealistic.

I returned to work-from-home in mid-Feb. 2022, but I'm off now due to a GCA scare in January '23 and on a much higher dose of Pred. , so I'm now in the process of reducing down to where I was prior to Jan. which was 14 mg. Now off of work again, but will be returning as the Prednisone levels off again. Le sigh.

The Ambassadors and Mentors on this sight are absolutely fantastic people, extemely knowledgeable, GPs/Rheumatlogists not so much. Stick with this forum and you will learn a great deal of very useful information. Had I not found it, I would have been a fish out of water for the last year and a half. It may be a long haul, but it is manageable. All the best in your journey.

Wouldlovetorun profile image
Wouldlovetorun in reply to Missus835

Thank you for writing to me.

Your time frame is similar to mine. Loved reading of how life improved for you with Pred.

I'm sorry you have had setbacks. It's like making progress on a steep hill and slipping and having to take stock, pick one's self up, take more pred and carry on. Back up the hill. I hope you fully recover soon.💐

Quality of life is really important.

I'm on 20mg and have a BT booked for sometime in April and then gp will phone to discuss dose. The more I read on here the more it sinks in not to reduce quickly. Its a false positive.

I hope you are having a great Saturday. Sunny where I am.

Feeling positive.

Best wishes

X

Missus835 profile image
Missus835 in reply to Missus835

It is for sure a roller coaster ride. Will level off though. Positive vibes only!

Wouldlovetorun profile image
Wouldlovetorun in reply to Missus835

😊

Darkchocolate1 profile image
Darkchocolate1

when my GP diagnosed me with PMR in 2020 she said I would not be on prednisone for long. Started 20 mg for a month and then to 15 mg a month later. Pain relief was immediate and complete but over 2 years later and several painful flares I am taking 13 mg. Very thankful for the relief but she should have said don’t know how long you will be on it. My rheumatologist says I will likely be on low dose for life. It does test one’s patience.

Wouldlovetorun profile image
Wouldlovetorun in reply to Darkchocolate1

Good morning! Thank you for writing to me. That sounds too much of a reduction with pred when you first started. Did you feel OK? I'm sorry to hear about the flares. It must have been disappointing 😞 and disheartening 💐

There's no rule book with pmr. It does its thing as and when. I think I will find the setbacks hard and discouraging.

I wonder why your rheumatologist said that to you about being on pred for life? That doesn't seem to be the normal way. I would want to see someone else and get their opinion before accepting that.

The gp and rheumatologist seem like opposites of helping you on pred!

Hope you are pain-free and enjoying Spring.

Best wishes

X

PMRpro profile image
PMRproAmbassador in reply to Wouldlovetorun

The only way to find out about being on pred for life is to get on with it and find out. There is precious little that can be done if what you have is PMR, nothing else works as well as pred. Personally I think it is preferable to have a rheumy who thinks for life is an option rather than one who fights to get you off the pred you need and won't accept that. There is a thread at present about a rheumy trying to get a 79-year old off 2,5mg pred and "threatening" MTX. That is ridiculous - taking a sledgehammer to crush a peanut ...

Wouldlovetorun profile image
Wouldlovetorun in reply to PMRpro

Poor person ☹️. Hope it goes well and the treatment is sorted. What an unnecessary trial for them. How will he/she negotiate this?

PMRpro profile image
PMRproAmbassador in reply to Wouldlovetorun

No idea, the crystal ball is out of order again - you can follow it too.

healthunlocked.com/pmrgcauk...

It really is worth reading other people's experiences and questions - you learn a lot.

Darkchocolate1 profile image
Darkchocolate1 in reply to Wouldlovetorun

I had no flare going from 20 down to 15 mg. Flare came later, rheumatologist put me on MTX and I got to 10 mg. But I had to quit due to horrible side effects and flared horribly. I was taking 13 mg when I got covid and when I finished taking paxlovid I flared again horrible. Tried taking Lefluomide and could not tolerate side effects. Made me so dizzy I could not stay on my feet. I prefer to reduce slowly on my own. Rheumatology isn’t pushing too hard for faster reduction. Prednisone side effects are under control for now. I would be happy to stay on a low dose for life. Quality of life is important.

Wouldlovetorun profile image
Wouldlovetorun in reply to Darkchocolate1

💐it's been hard for you. All these problems that impact life on a day to day level. I hope you maintain the good health you are enjoying🤗 Great to have wisdom and know what works best for you.

X

Doraflora profile image
Doraflora

hi Wouldlovetorun. I was very fortunate in that after taking my very first dose of Pred my pain subsided significantly. However: I didn’t take my GP seriously enough when she said I’d be on Pred for at least 18 months, maybe longer. And here I am 3 years on, very slowly tapering down to 4mg(for about the third time of trying).

It is a much, much longer process than I initially thought. But 3 years later I am totally resigned to it & have learned that patience is key.

I was also fortunate in that I was semi retired at the time of diagnosis so I do feel for you in juggling the demands of a physical job and convincing your employer that PMR isn’t like having a cold!

Good luck - and listen to your body.

Wouldlovetorun profile image
Wouldlovetorun in reply to Doraflora

🤗 Thank you for your reply. Its been so helpful reading it.I trust my gp and she's not only competent but kind. She's going to discuss tapering later this month. I've accepted that 2 years of pmr and steroids is more unusual and rare and to expect 5 years 🫤on this journey. It might be a lot longer!

I've no idea at the moment how things will go with my health. It's too soon to have hope of life returning to some semblance of what it once was. I'm trying hard not to stress about my job. 😮

I hope the tapering down is successful and you finally get to zero. It must be a trial. You have come a long way and made progress 🙂. Chin up!

Best wishes

X

Hi agree with other posts have to listen to your body I started pred in Nov last year probably had about a month off with sick leave and annual leave. But think I went back too soon. My job is fairly physical and there is a fair degree of mental stress and even though I now only work 2 days thur frid I struggled with work and was totally wiped out every weekend. Partly due to too fast a taper as well as overdoing it. My boss has been very understanding and accommodating allowing me to adjust working pattern. And thanks to Dorset lady I went to GP with a 7 week taper plan which he was delighted with So I’m 6 weeks in and coping so much better and feel life getting back to normal. Make sure you discuss taking calcium tabs with doc I was already on pred for 3 months before I found out about calcium loss associated with pred. So light at end of tunnel but don’t rush it’s quite nice to enjoy life at a slower pace and let others do the running about 😆😆

Wouldlovetorun profile image
Wouldlovetorun in reply to

Hello! Sweet of you to reply.

I can feel your positive attitude despite the trials you have been through. 💐 You have managed all the baggage pmr gives really well.

That was kind of dorsetlady to work this out for you.🤗

Hope you are having a great Saturday.

Lovely to 'meet' you.

Best wishes

X

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