Managing PMR without steroids - not a personal ch... - PMRGCAuk

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Managing PMR without steroids - not a personal choice and not one I would recommend

PMRpro
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I posted this reply in response to an enquiry about managing PMR without pred. and have been asked to post it separately. I try not to talk too much on the forum about my own problems - but sometimes it is required so excuse me indulging!

It is possible to survive PMR without pred - whether I would call it managing it is an entirely different matter. It really isn't much of a life - as it progresses the pain, stiffness and disability get worse.

I had PMR symptoms for 5 years without being diagnosed with anything or offered pred. Within 6 hours of taking the first 15mg pred I was able to move without pain, walk down and back up stairs normally instead of stomping down one step at a time like a toddler hanging on to the rail in case I fell and crawling back up on hands and knees, placing the cup of tea as far up as I could reach and crawling up to it.

It started in the early spring when I couldn't sleep comfortably in my usual position with my arms above my head. Over the course of the summer it became increasingly difficult to do my gym classes - I struggled to step up onto the step, in Pilates my balance was not as it should be, I couldn't lie on my side as the outer aspect of my thighs were sore (trochanteric bursitis). The final straw was in the autumn when I wanted to use the cross trainer in preparation for the ski season and after a couple of minutes the pain in my thighs was excruciating and I had to stop. I had to change gyms to one with a warm pool and aquafit classes - that was all I could do and I even struggled with that for the first few months.

That went on for 5 years - GP insisted there was nothing wrong, just my age, the bloods were fine. I was the grand old age of 51 the summer it started!!! I thought I was doing fairly well but was never out of pain. Ever. Then I had a flare of symptoms and another problem that led to me having to stop driving for a while (wrongly as it turned out) and that was when I discovered how bad things were. We had recently moved to a house without a loo on every floor - and doing the stairs so often nearly killed me. I couldn't drive - the only way I could go anywhere alone and even then only if I could drive to the door and not walk. I was confined to the house, isolated and in pain.

I managed - god knows how - to get here to our flat in Italy. It took a full 24 hours and I went to bed for 3 days when I got here. No stairs! Bliss. I managed to get my ski gear to the storage at the bottom of the lift - and dragged myself there in the mornings. By the time I had done one very short run I could move better. After 3 I went home after sitting in the sun for a hot chocolate. I couldn't do one long run - I had to have the rest on the lift. After a week or two it was a lot better in terms of stiffness and the hip pain was a bit better because of no stairs, just walking on the flat. I was almost back to normal as the flare faded. But I still had pain. Every afternoon I spent on the computer looking. And finally found polymyalgia rheumatica - by accident, mentioned in a blog. The lady the GP described fitted me to a T.

I eventually went home in April and went to the GP and told him what I thought it was. He referred me to a consultant, luckily only a 6 week wait. A new consultant - obviously thought PMR was beneath him and he wouldn't listen to my version of my symptoms but he DID give me 6 weeks of pred to carry me over a working trip to the USA for a meeting. That was when the 6 hour miracle happened. It continued through a taper of 2 weeks each of 15/10/5mg - and 6 hours after missing the first 5mg tablet I was in as much pain as before and in bed in tears. A dfferent GP took pity on me and gave me more pred. I returned to the consultant - and he ignored the evidence. in fact, even without a diagnosis I didn't see him at first, I was handed to a GP "with a special interest in rheumatology" who admitted he hadn't a clue. The letter sent to the GP bore no resemblance to the consultation I had had, and everything he wanted it to be had been discounted with tests. Luckily I was moving here so couldn't be started on the drug he wanted to use and was able to continue with pred. No-one here has disputed the diagnosis.

That was nearly 11 years ago. I am unusual, I have a relapsing form of PMR, I never get to a low dose of pred before the next flare happens. Without pred I wouldn't have a life.

The reality is not just a few months and it will burn out - 1 in 5 patients is off pred in under a year, just over a third in 2 years and half by 6 years. Half of patients need some pred to manage symptoms for more than 6 years, nearly 40% are on a low dose of pred after 10 years.

medpagetoday.org/rheumatolo...

And there is no way you can tell which group you belong to in advance - there is no link with severity of symptoms or response to pred.

So, in addition to the fact that untreated PMR may lead to GCA where the choice is stark, use high dose pred or risk losing your sight, do you think you could cope even with what you have now unendingly? And it is quite likely to get worse - one day you too might wake with the flare that leaves you almost unable to get out of bed.

154 Replies
oldestnewest

Thank you for sharing your story. I remember shuffling across the doctor’s crowded waiting room, all bent over like a very old person, in tremendous pain and feeling quite embarrassed and dramatic, everyone looking. Two days later I was completely restored with 20 mgs of Pred. I could have kissed the young doctor who recognised PMR - at last, after every test in the book coming back negative, over the past months, possibly years. I couldn’t get in or out of a bath or bed unaided by this time. I actually, secretly thought I’d had it.

I went on an office trip, thanks to Naproxen, a couple of months after my symptoms started. I remember having a bath in a hotel bathroom (everyone envied me as most people got showers) and not being able to get up. My phone was within reach and I was thinking of calling the reception and getting someone to pull me out of the bath. Luckily, there was a grab rail which I managed to get a hold of. I did laugh at the bottom of that bath - I was so happy to even be on that trip.

Hi Your trip to the doctor's was just like mine! Everyone looking at me as I staggered in. Having to go up in the lift. My PMR was brewing for about a week and then - bang, one morning I woke up and could barely move. My doctor recognised it instantly, fortunately, and put me on 20mg. Like you, remarkable relief! Now trying to get off it because of side effects and am down to 5mg but in loads of pain. It's not as bad as before, but getting dressed etc.is painful and I dread driving the car. My doctor has said I'm trying to get off them too quickly, so I'll have to stay on 5mg for longer. I wish there was an alternative.

PMRpro
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in reply to leothecat

Your doctor is right - and you have already gone down too far if you are in pain. All that will happen is that sooner or later you will be back where you started. PMR that is not or inadequately managed is more likely to progress to GCA - and then the choice is even more pred or risk losing your sight. The unmanaged inflammation in your body is causing damage without you knowing - so not enough pred isn't a good thing, PMR has adverse effects too.

Most side effects of pred can be managed and even avoided when you know how - start a new thread, tell the community where your problems are and they will make suggestions to help.

I remember being like that Jane. Started off with a stiff neck and headaches. Then one morning I couldn’t move with pain in shoulders arms thighs, well everywhere really. Couldn’t get out of bed unaided. If something fell on the floor it had to stay there. I read an article by a Daily Mail journalist who gave her account of having pmr and I realised she could have been describing me. My gp was brilliant and agreed with my self diagnosis. I paid to see a consultant because the waiting list for nhs was too long. Unfortunately he said he would go down the non invasive route and gave me injections every 2 months. The pain relief was minimal and only lasted a couple of weeks. After 6 months I was given pred and the rest is history. Coming up to 7 years this November. Personally I think I’m on pred for life.

PMRpro
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in reply to Suet3942

"Unfortunately he said he would go down the non invasive route and gave me injections every 2 months."

Needs a dictionary - injections are invasive! Oral pred isn't ...

I honestly think if you are messed around initially it really seems to impact negatively on what comes next.

My Rheumatologist thinks that my difficulty in tapering was due to the Large Cell Vasculitis, eventually GCA that was quietly establishing itself. So keep alert in case. There was a point when a text book taper stopped being that.

thanks Jane

Yellowbluebell
YellowbluebellAmbassador

I didnt have to wait as long as you for diagnosis only about two and half years after being told all my problems were down to having had numerous shoulder ops and a replacement shoulder (11 ops now) but luckily the senior doctor spotted the pmr and the rest is history and there is no way I would give up my pred and do this without it!! YBB

Me neither 😳

I'm with you and Pro!! ox

It seems quite common that PMR follows on from shoulder problems, mine came on after frozen shoulders and then flu-like symptoms.

I had a Shoulder Issue, Physio & Surgery but l believe it was the excessive Physio that caused my Shoulder to Lockdown ie a Frozen Shoulder & then wallop PMR Struck!

Shoulders do seem to be a cause of many people’s prelude to PMR......

Along with Major Stress; Significant Trauma ie Falls, l think if most people think back they can possibly pin point it but it’s the proof that cannot be confirmed......

I had a Consultant a long time ago, who was always ‘looking for the reason why’ l had a flare on holiday but managed to get to see him the following day when we returned home.

He spent a long time cross questioning me on what l’d been doing etc; he said one day there will be a Eureka Moment, his interest was driven by personal reasons as his daughter had some form of Auto Immune Disease which affected her muscles & for which she took Prednisolone.......

But then I wonder what brought on the frozen shoulders in the first place? Quite a few of my friends have had them in their late 40s or early 50s but not gone on to get PMR. Also their shoulders generally 'unfroze' in 2-3 months generally whereas mine dragged on over a year. It was definitely frozen shoulders at that stage not PMR because I had ultrasound scans that showed the capsulitis. So was it the flu-type symptoms (which actually followed a flu jab) the harbinger of PMR? We shall never know.

Yellowbluebell
YellowbluebellAmbassador
in reply to tangocharlie

Mine wasnt from a frozen shoulder. I wrecked mine scuba diving after an accident with another instructor. The ops were to try and repair one shoulder and then replace it and then my surgeon started on the other one. My doctor just blamed my pains in other places on my previous surgery even though it made no sense why my shoulders would cause pain in my hips!! The stress caused by my gp ignoring stuff was more likely to have caused the pmr than my surgery!! YBB

A broken shoulder was one of my triggers, I think. I had been mountain climbing, hiking, white water rafting in Australia and came home only to trip over my suitcase and break my shoulder.

Hi, my problems seem similar to yours as I also have had several ops on my shoulders and a replacement 3 years ago where recovery was great for 3 months ,and then my recovery “ fell of a cliff” as my surgeon described it! There was no mention of PMR then, and it was 3 years post op when I attended my GP as I couldn’t move my arms and was generally in a lot of pain and , following blood tests,PMR was diagnosed and I was put on pred. That was November last year, and following a dose of 15 mg, I felt amazing in just a couple of days! I have been trying to reduce the dose as I have side effects including 2 stone weight gain, but I have never been out of pain since reducing. I’m now on 7 mgs and lots of pain relief, including oramorph. I’d love to put the steroid dose up but am worried that the side effects would be even worse. Could you let me know what stage you’re at please?

Best wishes to you.

PMRpro
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in reply to BPlady

It is possible to manage the weight gain by cutting carbs drastically - for some more drastically than for others I fear - and even to lose weight while still on pred.

How have you been approaching the reductions - size of steps for example? And when/where did pain return?

Yellowbluebell
YellowbluebellAmbassador
in reply to BPlady

Hi, like pro says reducing carbs is the biggest thing. I didnt at first and was really naughty the first christmas eating lots of advent calendars and put on two stone. I have had to cut back a lot on carbs which was hard but necessary as I have also been diagnosed with pre diabetes. I am at 7.5mg now but I was advised by gp and my rheumy to do a very slow taper. I have only done 0.5mg drops since I hot to 10mg. I was diagnosed in oct 18 and started on 15mg and have only just got to 7.5mg two weeks ago. I dont have less than a month at each dose and often take 6 to 8 weeks. I havent had any pain from my tapers but dont do much when I first taper and dont do any excessive exercise at any time. I did umderdose myself for nearly a week when I took 2mg instead of 10mg and thought I was dying but three days on 15mg and I was fine and dropped back to my 10mg again. I stayed at 10mg for 8 weeks then just to make sure i had got over the hiccup!!

As pro and DL and countless others will say on here the biggest thing is not to relentlessly taper just to get off pred, pmr doesnt work like that and it just doesnt work. I would rather reduce very slowly and get to as low as my body can cope with irrelevant of how long or what dose.

The one thing I will NEVER do is reduce when in pain. I have no wish to suffer when pred.gets rid of my pain and allows me to live my life albeit slightly different to how I had envisaged. You need to get on top of your pain, reduce your carbs to help the weight and just accept life is slightly different for now. Xx YBB

Probably a little more than "slightly" different. :-)

Yellowbluebell
YellowbluebellAmbassador
in reply to nuigini

Yes maybe but we can still make the most of things . I decided if I couldnt do everything I wanted then what energy I did have would be put onto doing things with my grandson. We cook, grow stuff and do crafts. Nothing too energetic. I still.work part time and have just managed a whole week in a stressful trial without feeling too shattered. But I dont do anything much when I get home. I accept there are limitations and just work round them. Not ideal but definitely not the end of the world and as lo g as the pred keeps the painat bay I am happy.xxYBB

Great philosophy and I share it.

Hi YBB, I was diagnosed Nov 2018 and started at 15 mg pred. Initially tapered too quickly and now also taper down with 0,5. I do this by having 4 weeks of alternating days of old dose and new dose. I only have 5mg or 1mg tablets. Is this how you do it or do you have 0,5 mg tablets?

Also, on the subject of various size tablets, I often have to pay multiple prescription charges if i have multiple tablet sizes. Not always though. What is the situation here, is the pharmacist allowed to charge per size even though they are on the same prescription?

PMRpro
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in reply to Jesse-Cat

In the UK as far as I know the pharmacist is entitled to charge for each different prescription even when all written on the same script.

However - has no-one suggested to get a prepayment prescription certificate? If you are not over 60 or otherwise exempt from paying and have 4 or more prescriptions in a period of 3 months or 11 in a year they save you money. I often used to get a 3 month one and stock up just before it expired if I could be bothered!

services.nhsbsa.nhs.uk/buy-...

Jesse-Cat
Jesse-Cat
in reply to PMRpro

Cheers. I had looked at the pre payment but luckily i don't have any other medication needs, so not enough prescriptions to warrant it.

Yellowbluebell
YellowbluebellAmbassador
in reply to Jesse-Cat

Pro has answered the prescription charge question and fortunately I dont have to pay the charges. As for my tapers I break my 1mg tablets in half. Theses are uncoated and break very easily along the line in the middle. No pill cutter needed! YBB

PMRpro
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in reply to Yellowbluebell

Oooh - someone was asking what makes of 1mg have a break line - what sort are yours?

Yellowbluebell
YellowbluebellAmbassador
in reply to PMRpro

Actavis.

Yellowbluebell
YellowbluebellAmbassador
in reply to PMRpro

I have just checked all the other brands I have of 1mg and no others have the line but I have just broken the co pharma ones in half by hand and they broke evenly. Actavis seem to be the only ones with the line that I have at the moment though.

PMRpro
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in reply to Yellowbluebell

Any tablet that has a convex rather than flat face should break evenly - if you cant get your fingers onto the blooming things!!!

Yellowbluebell
YellowbluebellAmbassador
in reply to PMRpro

They are pretty small even you have good dexterity!! I have sent them flying across the kitchen a few times and had to go hunting before.the cat thinks.its a treat or now zach has a dog who thinks everything is food irrelevant of it being edible or not. The puppy will quite happily sit in their garden chewing wood and I lost count of the plastic things she managed to find in my kitchen before lock down to chew. How she got.these things out of cupboards we are still trying to work out!! Kitchen cupboard locks for a puppy not a child!!

I don’t know how you did it all those years, in pain & no support. Well done. I would have jumped off a cliff.

Thanks for highlighting your story, 5 years without diagnosis is worse than a prison sentence. It only took me two and half months and was diagnosed by a care home manager. Once I looked it up, I too agreed with the list, 17 out of 19 effects. Later that day I met with my doctor, who had submitted me to so many different tests, all say you are O.K. ? I then passed the list over and asked, have I PMR. "I was just coming to that" she said, we need to take a blood test to see. two days later, LUCKILY they proved I had PMR. 5 hours later I was a new boy, feeling like 25 (actually 70) and on 15 megs Pred. only in pain, two weeks later all was O.K. on 30 megs.

Thank goodness for experience and real people. Now nearly 6 years and stuck on 5mgs. Did try 4.5mgs 2 months ago but my hands were too painful, started to fail to pick up the kettle and undo a wine bottle cap, now that's serious.

Thanks to PMRpro for all your help, to PMRGCA.co.uk, being a member has been so helpful in understanding and keeping abreast of changes. I feel supported, rather than just another patient needing tablets. A big thank you to all who keep intouch.

Thankyou for your story. Similar in ways to mine. Glad to hear half of cases on Pred after 6 years. I wish GPs and Rheumatologists would accept that.

Wow, how sad. Years of your life. Angry making. I was so lucky, symptoms began September but I dismissed it as fibromyalgia which I’ve had about ten years now. By October I felt it was different. Doctors in November, a twenty minute consultation with my GP and he said it’s a classic case of PMR. I didn’t appreciate how lucky I am, but I do now. Thanks so much, S x

Thank you for this. I read it previously and again now, it is a fascinating tale. I cannot imagine how you tolerated it for so long. And it also shows what progress has been made. A young doctor at my GP practice recognised it, having done some blood test, only a month after my symptoms started. I then spent another 2 months insisting on a rheumatology referral (I was 52), seeing 2 rheumatologists and having a PET scan which confirmed it. And 2 months into the start of symptoms I had a Depo Medrol injection which first eliminated and then dampened the symptoms until I started Prednisolone. And I thought I was suffering.

I was diagnosed 2.5 years agmowirh PMR 9 ( inflammatory marker neg). I got about 60-70 % relief from the prednisone, I was started at 15 mg. Tapering after about to 6 mg I was not getting ever past that. I changed doctors as mine was very rude and did not believe me. For at least 6 months prior to diagnoses life was hell. I am a nurse practitioner and had to cut my hours to about 5 hours a week.

New doctor that listened to me drew many labs, was kind and understanding. She called me in about 3 days later and said I have hypercalcemia, and therefor Hyperparathyroid. I had scans and have a tumour on a parathyroid gland. I am awaiting surgery and over 4 months have gone down 5 mg of prednisone. There is no difference in pain or fatigue like I expected. The usual osteoarthritis hurts now. After discussions with the surgeon once you get the lil bugger out many people get a new lease on life. So I will let you know. Unfortunately I do have kidney failure related to high blood calcium, that will not return.

So always worth a mention to have Blood calcium, parathyroid hormone, Vitamin D drawn all at the same time.

They may also do kidney function, ionized calcium, a bone minery density test and urine calcium.

This is frightening when you have ego centric MD's that are poorly informed. I have heard many people share how poor the quality of life is with both illnesses. It is worth these blood draws to check.

I will let you know how I make out as I am Canadian and going to Tampa for the surgery when this Covid stuff simmers a bit. Look up Parathyroid.com for more info.

PMRpro
PMRproAmbassador
in reply to ShannonT

Absolutely - the fact that is a differential diagnosis rule-out seems to escape too many.

Maggie69
Maggie69
in reply to ShannonT

I had to have a parathyroid gland removed three years ago because of too much calcium I my blood x was diagnosed with PMR In February and am on Prednisone (I asked if there was any connection between PMR and parathyroid but was told no 😢I also have an underactive thyroid which I was told no connection either 😢😢😢😢😘

Thank you for that, it will help so many.

We all have such different stories. Perhaps it was my reward for caring for my father with his PMR, I was able to go to the GP and tell him what I thought I had. He asked how high can you lift your arm, I showed him, and he agreed that I was probably right. About as easy as yours was difficult.

Did you end up with GCA PMRpro ? If you didn't you're so lucky with suffering so long. Also you were so young to get PMR. What agony you must have been in and I can relate to that too. Last Christmas before my diagnosis, but on strong painkillers, even morphine, I couldn't even dress the Christmas tree the pain was so bad. Hubby had to help me in and out of the bath with me crying feeling so helpless. I was lucky, as once diagnosed the 15 mg worked within half and hour. Sadly, for me, as you know, I did go on to get GCA, which makes me quite anxious at times. However, with the slow reduction I'm doing well at the moment, and hope beyond hope it continues. I'd never recommend anyone trying to cope with PMR without the help of Prednisone, even just to protect themselves from GCA... how these people cope with the pain from PMR is beyond me. Well done for telling us your story.

PMRpro
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in reply to Staplehurst

I had some GCA symptoms for a couple of months but I didn't know then what I know now. I never had headache - and that was all I was asked about.

Staplehurst
Staplehurst
in reply to PMRpro

Agree, my symptoms weren't there either. But, I do think I had GCA at the same time as PMR last year. The different weird headache was awful. The jaw, tender head and top back toothache came this year. Happily, these all seem to be settling down. What was your original inflammation levels showing ? Mine were 515. Managed to get them down to 22 and 17 last Feb. and now 2 and 5. Would like to get lower but that will come in time.

PMRpro
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in reply to Staplehurst

My inflammation markers never went out of normal range - even though we now know they were probably raised for me. Not entirely the GP's fault - though time he learned that blood tests don't always tell the whole story!

Do you think the delay in diagnosis makes it harder to get better in your opinion?

PMRpro
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in reply to Estellemac

I suspect it might - but I don't see why if you see what I mean. The pred is not supposed to have any effect on the underlying a/i disorder.

HeronNS
HeronNS
in reply to PMRpro

I suppose alleviating the systemic inflammation reduces stress on the body and therefore healing can take place. So pred does help, indirectly?

PMRpro
PMRproAmbassador
in reply to HeronNS

Maybe - I wish I knew!

Mant thanks for sharing your story. Trevor.

I'm in awe of the years you suffered and the way you fought. I feel like I know you better. Thank you so much for sharing all of that, it means a great deal. xo

Love your gutsy attitude, it will serve you well and has certainly helped many of us. No wonder you are a walking medical journal~!💖

Yellowbluebell
YellowbluebellAmbassador
in reply to Grammy80

Most of us call it stubbornness that she has!!xxYBB

😅🤣😁 Well, I'm just getting to know her~! xo

PMRpro
PMRproAmbassador
in reply to Yellowbluebell

Others are less complimentary ... ;)

jinasc
jinasc
in reply to PMRpro

I know that only too well.

Yellowbluebell
YellowbluebellAmbassador
in reply to PMRpro

I was being very tactful i feel!! Well at least for me!!xx

nuigini
nuigini
in reply to PMRpro

I can't imagine that!

I never cease to be amazed at how you coped through those years. I was a quivering mess by the end of 14 months. 🌻

And you have helped so many of us. Thank you.

Thanks for your story, those first 5 years must have been like living in hell. I'm into my 6th year with PMR. Recently got down to 1 and half mg using DSNS and suddenly had a major flar. Back to 15mg and start all over again! Arhhhh! I think I will end up in the loony bin!

Staplehurst
Staplehurst
in reply to Pastit

What a terrible shame. What was your tapering regime., did you do it very slowly? Dreading this happening to me and having to go back up. Mentally on the Pred for me hasn't been good. Never suffered with depression and had to work so hard to pull myself together, but tears have never flowed so freely being on a high dose.

Pastit
Pastit
in reply to Staplehurst

Hi Staplehurst,

It’s a long story so I will give you the short answer. I had great difficulty in reducing the prednisolone from the very beginning really. The only time I had raised inflammatory markers is when it all started after being treated with what the thought was torn ligament in my shoulder. That was 6 years ago.

After I managed to get down to 10mg, I started the Dead Slow Nearly Stop (DSNS) method, which was recommended by PMRpro on this site, Dorset Lady has another system. Over the years I have tried both, but even then, tapering was difficult but eventually got to 3mg. At that stage I could not get any lower without arm pain returning. I consulted my Doctor who said that he will contact a rheumatologist to see what his advice would be.

A summary of the advice which came back was “some patients require a maintenance dose for a very long time, but when you feel that you are completely ok, try to reduce again”

That advice was March last year (2019) since then I had been trying to reduce and eventually got down to 1mg before Christmas.

Despite having a flue jab in November, I picked up some ghastly virus over the Christmas period and felt very unwell with a dry cough which turned to a wet cough. It lasted to end of February this year. Most people I spoke to in our local area have a similar story concerning the cough. Many saying that they had not experienced a cough lasting so long. I checked with a doctor who said, “my chest was clear, it’s probably a virus which is taking time to clear”.

During that period, I had to increase back up to 2mg. I tried another DSNS recently but halfway through I started to experience back pain mainly around my waist which is unusual for me. Then one morning I woke up with left arm pain and a feeling as if I had been kicked by a horse in my buttocks. Also, I noticed that I had a pain in my Jaw when eating and could not open my mouth wide. I knew I was experiencing a major flare, and this was serous, deeply concerned about my Jaw and that I might be developing CGA.

I managed to get a telephone appointment with a Doctor that morning who said, “It sounds as if the PMR is coming back, it does sometimes", "you will have to start again with 15mg”. If you start getting pains in your head or tender scalp you better come back to us” In the meantime, I will check your CRP ESR and a full blood count. I took the 15mg of pred that morning at had the blood test later in the day. All the results came back as normal and was told no further action, continue with the PMR treatment.

I dare not tell you the long story!

Staplehurst
Staplehurst
in reply to Pastit

Wow ! sounds to me as though you defo had GCA. I didn't have the headache but did have jaw pain like you it was painful to fully open mouth. Tender head too. I was immediately put on 40 mg for 2 weeks, then 30 mg for 2 weeks. When I got to 20 mg I stayed on that for 4 weeks. I'm now trying to reduce 1 mg every 2 weeks. Monday I'll be taking 18 mg. Please be careful if you experience any GCA symptoms and get yourself on a higher mg than 15 mg. You seem to have been through the mill, like many others on the forum. Just a great place for sound advice, I wouldn't know what to do without some of the ladies and so friendly, nothing is too much trouble. Evidently, ESR/CRP can come back normal but in fact you'd have a lot of inflammation still going on to be experiencing pain. Last Dec 2019 I was diagnosed, sadly privately as my GP was treating me for osteoarthritis. He even had me on morphine. Ibuprofen etc. Enough was enough in Jan this year when I took myself off to our local private hospital. Full blood count taken, chest X-ray, urine sample and a thorough medical. Inflammation came back 515, it should be 6. First 15 mg he gave me to take, only for PMR at that stage worked within half an hour. Once I'd got down to 8 mg the GCA kicked in. My last blood test taken last week my ESR is now 2 and CRP is 5...still a tiny bit high on both, but going in right direction. So if you have lots of Pred by you take more to protect you from GCA. A lady on the forum went completely blind due to not being on a high enough strength of Pred. And another lady lost the sight in one eye.

Take care and best of luck

Anne

PMRpro
PMRproAmbassador
in reply to Pastit

I got under 5mg a few years ago, was fine apart from a bit of fatigue for several months and then bang. Same as you. I think I've give up ...

PMRpro - thanks for “indulging!” Good to hear your story. I consistently appreciate your posts!

I had significant PMR pain starting last February. I’m a 64 year old male.

Initially I was diagnosed with “tendinitis.” I received cortisone shots in both shoulders and got immediate relief! After three days the PMR roared with a vengeance.

My GP gave me 40mg of Pred for three days, in mid March, suspecting PMR and sent me to a Rheumy. He dropped me to 30mg immediately and I was able to somewhat function but the pain was still ferocious from 5am to 2pm most days.

My health care provider moved me to an in network Rheumy. He had me split my Pred dosage and I dropped to 20mg after a month. I took 10mg in morning and 10mg after dinner. I had a wonderful three weeks, from late April to current, and operating at about 90%!! My pain had so subsided my wife and I wondered what was going on.

After blood work done earlier this week, my Rheumy informed me today that all my numbers are normal and there is no inflammation in my body. He says I’m in “remission.”

I’m currently splitting 17.5mg of Pred and will taper to 15mg next week - if all goes well. I’ll use a few weeks to drop to 10mg. I’ll then use your slow tapering plan to drop from 10mg on down...

I’m feeling very good and was pleasantly surprised with my Rheumy’s diagnosis today. I’m hoping I’m in “remission” but we’ll see as time unfolds.

So grateful to this community for all the input and support. Onward...

RD

Staplehurst
Staplehurst
in reply to rd2073

The very best of luck to you rd2073. I too am on my tapering regime and currently on 19 mg after being on 20 mg for a month. I've decided to taper by 1 mg every 2 weeks and so how I go. You're lucky that GCA didn't appear as that's far more worrying with potential sight loss if not caught early and treated with very high Pred.

PMRpro
PMRproAmbassador
in reply to rd2073

Well - the bad news is there's remission and remission. You are in drug-induced remission - that doesn't mean the underlying autoimmune disease has gone into remission, it means you have achieved a balance between inflammation and being on enough pred. That doesn't mean you will be able to just reduce to zero pred and stop pred. Too many doctors think that, get their patients to reduce the pred and then act all surprised when the symptoms emerge again and decide it isn't PMR after all. Only 1 in 5 patients is able to discontinue pred after a year, a third are off pred by 2 years. But the majority ...

jinasc
jinasc
in reply to PMRpro

I started reading 'the book'. I had to put it down after 4 chapters, too much reminded me of what Mam went through with Heart and then PMR&GCA.

I now also understand why the mean figure for men and remission is so so different to women. For the first time in my life, I wish I was younger.

xxx

PMRpro
PMRproAmbassador
in reply to jinasc

I'm still ploughing through populism in the western world. Must try harder ...

I put up with that appalling pain and stiffness for 4 months before diagnosis and my first dose of pred. I remember the hour spent struggling to get out of bed and dressed every morning, having to buy a counter-top halogen oven because I couldn't get down to open the oven door, the time I was stuck in the bath for 90 minutes etc etc.

Another month like that would have finished me, let alone 5 years, so I truly admire your fortitude.

I remember vividly getting stuck on the floor at my Pilates class - this was pretty much at the end of the induced flare up while waiting for the scan. The pain and immobility was unbelievable. I'm the bendiest person ever under normal circumstances!

I have no idea how you managed for 5 years. I was broken at 5mg after 6 weeks and couldn't work.

Glad you have a happy medium now!

Wow, you’ve been through it!! I was so blessed to see my GP after three weeks of increasing agony and she called it PMR straight off - I’d already had the blood work before she saw me and raised ESR and CRP so straightforward.

Still referred to Rheumy to be sure and saw him within 8 weeks!

Considering I live in rural Wales I got very lucky with my care!

You’re the first person I’ve ‘met’ to get struck down even earlier than me - I was 54

Thanks for sharing

PMRpro
PMRproAmbassador
in reply to Loopy65

There are several of us "babies" on the forum.

I referred to "just" PMR in a reply on another forum once, meaning only PMR and not added GCA or inflammatory arthritis - someone attacked me verbally telling me I obviously had no idea at all how bad PMR could be! Yes, ma'am, if you say so ;)

AussieMel
AussieMel
in reply to Loopy65

I was diagnosed last year here in Australia at 48. Over the course of one week it evolved to where I could barely walk. My mother has it so I had a heads up that it might have been in my DNA, lurking.

Thank you for recounting your experiences. I am amazed at the difference in the quality of medical advice as well as the apparent obduracy of some medical practitioners. It makes me realise how blessed I am in having a good GP practice. My symptoms were like yours but compressed into 3 days leaving me unable to sleep, getting out of bed and getting dressed with great difficulty. I saw my GP on the third day and after a brief examination he suggested the possibility of PMR, gave me a prescription for 15 mg Pred and sent me to the hospital for blood tests. A few hours later he rang me at home to say the blood markers were Positive and to “ cash in” the prescription. 4 hours later all pain and stiffness gone.

One interesting point you might be able to comment on was that he thought I had had PMR for a year prior, despite no pain or stiffness but an unexplained weight loss over that period from 12.4 to 11.5 stones.

PMRpro
PMRproAmbassador
in reply to Cycleman

It is possible - wasn't an effect I have ever enjoyed!!! I gained weight because of the inability to exercise combined with the depression that inevitably developed after years of isolation and constant pain. As I often say, there are a lot of so-called pred adverse effects that will develop with PMR left to its own devices. There are some strange ones too - I have a flare at the moment and I'm craving the same sort of foods at the same sort of time that I did then!!!

Hello PMR Pro,

I think the number of replies you have had to your, so open and vulnerable post, says it all.

I just want to thank you for your honesty and openness. Your service to this forum is invaluable.

Gratitude and Blessings.

Thank you for sharing, what a crazy situation that neither GPs nor Rheumatologists will diagnose PMR until blood tests show it clearly and at regular intervals. Even then, From what you write, it seems to be considered an ‘inferior’ form of a rheumatic condition. What struck me is your telling of the consultant who thought PMR ‘was beneath him’. I worked persistently with gentleness to get on a particular Rheumatologist’s list because of her kindness and interest shown to me, all starting to finally go well to suddenly be dismissed by the Covid-19 affects on the Royal Free hospital. My letters to her are ignored. There is no way one can get another human being to feel the pain and stiffness and fatigue one is going through. I think from reading of your experience that I was showing symptoms of PMR nearly two years before they finally presented from blood works. Then another 6 months to diagnosis, then another 5 months to finding a good rheumatologist, then sudden dismissal. My local GP has taken up the baton, he is my only life line. Very grateful I found this forum.

Thank you for recounting your experience, it is so like my own, which when I look back has been several years of increasing pain and stiffness in my legs, back and shoulders. It was my own fault I did nothing about it by just assuming it was my age or I needed to “man up and keep exercising“ or resort to pain killers daily.

However when in the 5 months from September to February it worsened dramatically so that my body was locking up and when I couldn’t move in bed except to wriggle to the edge and fall out and I was so exhausted I could hardly function even I realised the GP was the only place to go!

An initial telephone appointment with a GP followed by full screening blood tests that same day and the results given to me that night was the start of my known PMR journey. By the next day I was on 15mg of Prednisolone plus omeprazole and high dose vit D ( as massively deficient in this apparently). Immediately I began to feel so much better and within 2 days was pain free. It was like a miracle! I had weekly GP appointments and blood tests initially. I can’t praise the GP response enough.

Now 3 months on and with monthly blood tests showing greatly reducing levels of inflammation I’m tapering the steroids by 1mg per month as long as all goes well. I’ve also now been prescribed calcium and Vit K-M7. Due to the Covid19 crisis I’ve not been referred to rheumatology, but as long as the supportive GP management continues and I feel well I’m happy.

So glad I found this forum, already I’ve learned a great deal from you all. Especially that PMR varies from person to person and that each of us should pay heed to our own body and how it feels on a daily basis.

I really can’t begin to imagine how you managed for 5years without Pred, Mid October to Mid February was way more than long enough for me......

Do you think that the longer you were untreated has influenced the length of time the PMR has lasted?

I’m firmly convinced that my continued persistence in dragging myself to work & continuing at pace once l started the Pred has influenced the length of my journey but unfortunately we cannot know!.....

PMRpro
PMRproAmbassador
in reply to MrsNails

I honestly don't know - I don't think it has helped but I was also messed about with pred, stop, fight with the doctor, start again. I was fine at 5mg before then but never was again. Then I was on Medrol/methyl pred that didn't work and that caused a massive flare again. I do see a connection with getting control, reducing, losing control and longer journeys - anecdotally at least, I've never really had an opportunity to keep the sort of records anyone would take notice of.

I wonder that too. I think as I was over-doing things and not on enough Pred it has damaged my shoulders and legs.

I contracted (if that the right word) from adverse reaction to drug. But similar experience at Surgery. 3 trips in 3 days and told nothing wrong. Demanded an appointment with Dr not Nurse Practice. Took my own papers to what I thought it was(my daughter a Nurse Prac in another surgery 200 miles away did the research). Things moved fast then. Now after 21/2 years get the ‘you should be on a lower dose of Pred by now). Lately my GP is being very supportive. Must have time on her hands to looks things up.

I had a similar experience many many years ago but I had at that time I had private health.

My doctor recommended a consultant who prescribed Arcoxia. At the time it was like a miracle drug. I could do most things that I could before. After several years things deteriorated somewhat and I struggled for years thinking that at 50 this is my life now. At some point I decided to some research on line, low and behold there it was in black & white, my symptoms!! I printed the whole research and marched into the GP and said there it is, my symptoms exactly PMR! With a few huff & puffs from the GP and stuff like you shouldn't believe everything you find on the internet, I was prescribed Pred. Had my ups & downs with Pred trying to reduce the dosage as per the GP's insistence. That was 20 years ago and I still have PMR. I'm consistently on 6 mg which suits me just fine. The GP is always going about you to reduce, well the last time he said that, I just lost it and told him very bluntly, I know my own body, I know what pain and problems I have when trying to reduce, so don't ask me to reduce, it's not happening! The GP even suggested that I come of Pred completely for a week in order that I can have a blood test without any pred in the system. Really, I don't think so! Anyway, I live what I got, there are many side effects to Pred but hey, I can cope with those and it's better than having the effects of PMR

PMRpro
PMRproAmbassador
in reply to Bobbury

Next time you see him, ask if he is trying to kill you! 20 years of pred and suggest the patient stops cold turkey?????

Bobbury
Bobbury
in reply to PMRpro

I know, it's ridiculous and why do GP's do this. Is it because they feel we are subservient or something and we must comply with their instructions. I'm just an ordinary person trying to survive like everyone else. Why try to be this domineering person who by all reasoning should know their job. They also have the internet like me, look things up and make decisions but to be just outright obnoxious (might be a strong word maybe) is beyond me.

PMRpro
PMRproAmbassador
in reply to Bobbury

Ah - but doctor knows best ... THEY have a medical degree and know how to understand science.

Jan_Noack
Jan_Noack
in reply to PMRpro

"THEY have a medical degree and know how to understand science." and therein lies the problem, at least in Australia. the medicine degree has very little science in it! No biochemistry, first yr chem only ..which is probably enough, they have anatomy (which is memory not science), first year physiology and some of second year, no food chemistry, no statistics..so no understanding if they ever do read scientific papers..which most at least at Go level don't They get fed info from the govt and doctors bodies of what is going around at that time and what to do and what t prescribe and must follow it or be prepared t stand up and fight if they don't. They do not have much idea of how to understand science or interactions of drugs in people's bodies ..other than what they are fed. They do not have understanding of how drugs mak=y interac with there , other than being told not to prescribe together,..or usually of how they work...at least that is what I think is going on ..and from what subjects they do. A lot more on surgical skills and taking blood, and blood pressure and listening to chests and reading the reports sent to them and listening and interacting with people, skills in reading xrays and setting broken bones but not CTs or MRIs or what is now available with AI software etc..they really don't now how to understand science as far as I can see. Some here have found exceptional specialists and even GPs though.. those that haven't usually haven't made it here unfortunately.

PMRpro
PMRproAmbassador
in reply to Jan_Noack

Oh absolutely, I agree with every word! They also forget that a lot of patients are scientists too!

But how do you like this idea we were told of by a colleague who ran a medical course in the US: they no longer have physiology lectures , they sit around in discussion groups and talk about physiological principles. They aren't TAUGHT basic physiology - and if you don't understand normal physiology, how can you identify abnormal events?????? No wonder we meet doctors who make it up as they go along!

Jan_Noack
Jan_Noack
in reply to PMRpro

I believe it, I guess they are taught that reassuring a patient and the ensuring they have psychology counselling is the way to go.. or perhaps a pain clinic to check the person is not drug seeking for a patients tooth and jaw pain or trigeminal neurlgia type pain or migraine and scalp pain, sigh. So glad for every one of your posts. Very reassuring and I feel I'm not alone..well with everyone on here

PMRpro
PMRproAmbassador
in reply to Jan_Noack

Physiology - not psychology

MamaBeagle
MamaBeagle
in reply to PMRpro

They learn how to read flow charts on the computer!

PMRpro
PMRproAmbassador
in reply to MamaBeagle

Handy... Perhaps they learn to do a physical examination on the computer too ...

MamaBeagle
MamaBeagle
in reply to PMRpro

They're gonna have to with all this virtual consulting at the moment!!

This is like reading about me the horror of it all still haunted me as no one would listen I said I’ve have pmr for years but been told no just 18-24 months I don’t think so same sore hips new beds cawling down the stairs family laughing but reading your post seems I’m not alone. by the way I have Gca now which scares me to bits as my head is so tender at the moment but luckily pmr ok thank god couldn’t cope with both. Why do we get these severe pains in our head no one has told me what they are and I keep thinking the worse. Please can someone put my mind at rest. 🙏🏽

PMRpro
PMRproAmbassador
in reply to Tamtan2

The pain in your head is probably from inflammation and possibly poor blood flow - and are a sign you may need more pred. Or, if it is GCA that is not responding well to management with pred, you might be considered for tocilizumab/Actemra. What dose are you on?

Tamtan2
Tamtan2
in reply to PMRpro

20 mg for last 4 weeks. No pmr pain at all. Thank you for getting back to me.🙏🏽

PMRpro
PMRproAmbassador
in reply to Tamtan2

So there shouldn't be at 20mg - but GCA is another matter.

Tamtan2
Tamtan2
in reply to PMRpro

What would you suggest I read that 20 mg my be enough or to much for par but not enough for Gca.? What’s you experience.

PMRpro
PMRproAmbassador
in reply to Tamtan2

It depends on whether those head pains are due to GCA - if they are you might need more pred for now. The right dose is the one that gives you the same relief as even higher doses - and no-one can say what that is but you.

Tamtan2
Tamtan2
in reply to PMRpro

Yes it’s definitely the Gca temples sore scalp sore lumpy head and I didn’t have these symptoms when on 30mg prednisone. X

PMRpro
PMRproAmbassador
in reply to Tamtan2

Then you need to speak firmly to your doctor. Did you drop from 30 to 20 in one go?

Tamtan2
Tamtan2
in reply to PMRpro

No dropped 5 mg every two weeks x

PMRpro
PMRproAmbassador
in reply to Tamtan2

Still too fast IMHO. 5mg per month is more like it ...

Tamtan2
Tamtan2
in reply to PMRpro

Thanks for that. What effect does coming off to quickly have. 🙏🏽

PMRpro
PMRproAmbassador
in reply to Tamtan2

You miss the dose you want: the lowest dose that manages the symptoms well. GCA remains very active for the first 6 months and relapses are common for 18 months at least. That is the point you go slowish and keep a close eye on what is going on. Not rush because it is high dose pred - you need it still or you will flare. As you have.

Tamtan2
Tamtan2
in reply to PMRpro

Thank you so much 🙏🏽

Yes I threw away a perfectly good mattress and Tempur pillow that costs £100 and used twice but still woke up with a stiff neck so threw away!

Thanks PMRpro for this important post and for generously sharing the kinds of details we'd probably prefer not to hear BUT really DO need to hear - they give us a true sense of what are 'likely realities' or possible consequences of not trusting our own experiences and also of accepting less than adequate or tardy medical 'treatment'.

I WISH like many others will here that the duration of PMR and/or GCA was not quite so 'long' on average but I am reluctantly realising that all this will probably go on longer than most of us anticipate as we start off reading info which suggests we may be out of the woods before 'too long' - especially if the tapering schedules often casually issued reinforce this kind of unrealistic 'fantasy'.

I also found it interesting you say you have an 'unusual form' of PMR - a 'relapsing' variety which makes it impossible for you to reduce your Pred below certain levels. It has only been 3 and a half years since I 'got' PMR and shortly after GCA and as I was looking today back over my medical history I also seem to be unable to get much below 15 mg without a flare or even recently a major 'relapse' (I had got to 11.5mg for a mere moment). I can see how I tried to ignore initial signs which indicated inflammation was slowly building up again - your 'dripping tap'. This is now a clear pattern to me which would not have been very apparent if I had not kept my own notes as my CRP is only slightly indicative but does correlate accurately when I check it more often . I have recently had a change of doctor - my 'new' one who will be much better I think and will also 'allow' me to keep managing my dose as I need to.

I am probably just being impatient expecting things should be better at this stage - but your duration numbers reminded me of this delusion. But I am also 'grateful' for this drug - the 'dreaded' Pred - as it has almost certainly saved my eyesight (unlike my mother's who had no access to Pred and also had serial small strokes) and which has enabled for me some quality of life. My 'side effects'are not too bad so far - cataracts (now fixed) and thin skin - otherwise really just a moon face and a bit of extra weight in strange places (for me) with 'good' HBA1C levels.

So thanks so much again for your very helpful and unambiguous post - but I hope you are 'otherwise' 'well' !!

Best wishes

Rimmy

X

tangocharlie
tangocharlie
in reply to Rimmy

I love that phrase 'we start off reading info which suggests we may be out of the woods before 'too long' - especially if the tapering schedules often casually issued reinforce this kind of unrealistic 'fantasy'. Even the bloomin official guidelines suggest we'll be off it soon like 18 months with a fast taper!

Tamtan2
Tamtan2
in reply to Rimmy

Thanks for this message also it makes me feel much better to know I have army to fighting with me against this illness. 😘

Thank you so so much for sharing your painful and worrying story..

The Medics seem to be in denial about PMR. Even some Rheumatologists seem to get it wrong . Thank heavens for the experience, knowledge and advice from you and our other wonderful gurus on this forum.

We are all so very grateful xxx

Ignorant rheumatolgists have done me so much harm and caused so much unnecessary stress and suffering. I don't think they see many cases of PMR so just spout what they'e read in a text book once, quick taper off steroids because they're bad for you. There are some good even excellent ones too, but they're few and far between.

Me too can’t believe mine said my head sore with scratching it not Gca when my head was covered in lumps and I couldnt comb or wash my hair it was so sore. 🙏🏽

I do not know how you coped all that time.

It took me about a year to get diagnosed and get the miracle drug called Pred. In that year before diagnosis like you I went back to see my GP every few weeks, begging them to find out what was wrong with me. Like many of us have suffered, I was told it was stress and depression and given amitryptaline which was a horrible drug, just gave me nightmares. I struggled to work and being self-employed I was therefore desperately broke too. Friends and family and even some specialists I was referred to like a cardiologist just said I needed to do more exercise. Believe me I would have loved to. I tried to claim benefits as I couldn't work but was deemed 'fit for work' by ATOS and left penniless. Once on Pred I got back to doing some work but it was still so difficult as I only started on 10 and the GP made me taper down to 5 within 6 months so it was agony to walk or carry things, but nonetheless I forced myself to as I knew no better and trusted he knew what he was doing. I could never get below 5 so stayed there for 3 years, in some pain but bearable.

At that point I asked to be refered to a rheumy to try and get off steroids which was a dreadful experience - he said I couldn't possibly have PMR because I was too young, by then I was 54, diagnosed at 51.

At that point I started Googling PMR, luckily found the PMRGCAuk website and via the link this forum. I posted the question 'Am I too young to have PMR?' and got the resounding answer no! Which spurred me to change rheumy. After more wrong diagnoses and disastrous trials of Azathioprine and MTX I decided to wean myself off Pred in 2017.

That's when I got adrenal problems that I've written about in the adrenals post, and flare up of PMR.

I was then off Pred for about a year but it was difficult to function. At this point I had to give up work, not just because of PMR but because my eyes had got so bad (an eye disease called RP, not GCA) I was registered blind. As I didn't want to go back on Pred I persuaded my new rheumy (my 5th by that point) to let me try steroid injections. They worked well but he would only let me have them every 3-6 months which was wrong and led to more adrenal problems and massive flare up of PMR again last December.

THIS is why I try so hard to help others who have PMR, by posting on here and volunteering on the Helpline. It has been such a difficult 9 years, largely due to the ignorance of doctors and rheumatologists, that I want to do something to help change and spread awareness for both patients and doctors.

Wow—- what a horrendous story! All I can say is thank goodness for Dr Google because that is how I diagnosed myself —- after being moribund in bed for days—— and helped by the knowledge of my Mum’s auto- immune disease Polymyositis.

Managed to get to my Doc, weeping, who phoned the Rheumatology Dept of our local hospital whilst I was there. They spoke to me & then confirmed PMR , telling him to start me off on 15 mg Pred. Three days later the magic happened! I was very grateful to him for his prompt action, he is a good guy and lets me taper at my own pace, which I could not do without the wonderful ambassadors of this amazing forum.

Hidden
Hidden
in reply to tangocharlie

Why was Azathioprine disastrous? That has been bantered about between my ophthalmologist and rheumatologist in an attempt to control my uveitis.

I have heard of Retinitis pigmentosa (RP). It is interesting how the eyes are involved in so much of this. I've been functionally blind in one eye only on several occasions (usually my left eye). I never could figure out why my left eye was under an inflammatory attack while my right eye was mostly left alone.

My ophthalmologist was very generous with the pred for 15-20 years before PMR. I never did mention the pain I was having at the same time and leading up to a bout of uveitis. When I had an ample supply of leftover pred from multiple bouts of uveitis, I managed the pain myself.

I give my doctors credit for discovering what was going on. When PMR was diagnosed it seemed like a blessing because they ordered pred daily.

Now, I feel that I owe my doctors my gratitude. I have learned over my years in medicine --- there is far more that is unknown as compared to what is known. However, I suspect it may have been an adrenal issue from the very beginning.

tangocharlie
tangocharlie
in reply to Hidden

Azathiaprine gave me serious breathing problems and dizziness. I don't know why it was even prescribed as it's not indicated for PMR, I think maybe at the time because my rheumy thought I didn't have PMR if it was arthritis it would sort it? My RP is a very rare inherited eye disease, there are only about 20,000 of us in the UK and I don't think connected with PMR, although there are many 'syndromes' associated with RP such as NARP, and I researched them all at one stage to see if they could account for my symptoms. I'm on the national 100,000 genomes project for people with rare diseases so that may turn up something. I think RP is generally caused by another darn viking gene?

PMRpro
PMRproAmbassador
in reply to tangocharlie

My cousin has RP, the effects started as a teenager and she has been registered blind for years now. Mystery - no history of it anywhere in the known family. Mind you - there is a lot of unknown family I suspect ...

tangocharlie
tangocharlie
in reply to PMRpro

We think we got it off my German mum as she had eye problems in her 40s. For most strains of RP it is passed through the female line and your children have a 50-50 chance of getting it, in our family 2 out of 4 children have it, me and one brother. We are both on the 100,00 Genomes project to identify what faulty genes might have caused it, but as my mother is dead that doesn't help their investigations. Luckily mine is the slower form so I probably won't go totally blind, at the moment I have less than 10 degrees left, it's like seeing the world looking through a pinhole, I can only see, blurred, what I'm directly looking at and have no peripheral vision, so trip over things and bang my head a lot .

PMRpro
PMRproAmbassador
in reply to tangocharlie

I think one of Jan's children has it, not sure though as we aren't really in contact. When did the genome project start?

Hidden
Hidden
in reply to tangocharlie

"Azathioprine (Imuran) is a drug used in certain autoimmune conditions (diseases where the body’s natural defense system attacks itself). It suppresses the immune system by interfering with DNA synthesis (the creation of DNA molecules). It is used in dermatomyositis, systemic lupus erythematosus (lupus), inflammatory bowel disease, vasculitis (inflammation of the blood vessels), rheumatoid arthritis, as well as other inflammatory conditions."

It is all trial and error when it comes to treating autoimmune problems. Nobody has the answers. The immune system is mostly a new frontier in medicine. Doctors can't be expected to know what isn't known.

I don't need anymore breathing problems and dizziness but I will likely give it a try.

tangocharlie
tangocharlie
in reply to Hidden

So do you mean you think you had adrenal problems from before which were misinterpreted as PMR or that you also had PMR? Re your years in medicine, are you a doctor or some other medic yourself? You seem very knowledgeable about all sorts of things

Hidden
Hidden
in reply to tangocharlie

Just a nurse but a wealth of experience while being a nurse. I have multiple autoimmune problems and it tends to run it the family. PMR was an additional problem that was tacked on at age 50 something after a long list of other problems. I'm 65 now.

I never pretend to be knowledgeable at all. I knew next to nothing about the adrenals and HPA axis until a chance internet encounter with someone I never got the chance to meet. I have been trying to read more about it ever since. If you are interested, I could send you a link to our initial dialog that probably still exists on a chronic pain forum. This person was indeed knowledgeable.

I'm still sorting through some information. My quest is only to discover why things happen to me. That is more than enough to sort out but much of what I read about my conditions points to the adrenals. I don't know for sure ... wish I knew.

tangocharlie
tangocharlie
in reply to Hidden

No such thing as 'just a nurse'! In my experience they often know far more than the doctors, and unlike many doctors, actually give a damn. Yes please I would like to know more about adrenals, I think, though I doubt I'd understand anything more technical than I've previously written.

I didnt like amuthyrptiline either..my a dental pain clininc in 2003! for symptoms like GCA. I was lucky I never lost my sight and do not know if I ever had any vasculitis but suspect it. Sorry to hear you too have had such a struggle and thanks for helping out. This place is marvellous. I wish I had happened in it ten years before! but I'm still thanking my lucky stars that I did. Sorry to hear of your sight, I must look up what RP is. I have never heard of it...and thanks for helping others and reading awareness. It is really needed. I suspect I may have started any time after about 28..but more so from 51. diagnosed at 61. (at least ten years without treatment..and it does get worse). I suspect one does die from it when untreated as I couldn't have got any worse without death.. but it would have been put down to something else I guess.. no idea what though. I'm complicated though with other things going on(robably moyamoya as well as autoimmune thyroid so I still haven't worked out what symptoms go with what... learning though and thanks

I remember your first post and how we all galloped towards you and look at you now.

Indeed, ths group has saved my life at least twice. I think it was you, when I was querying whether what I was feeling was adrenal problems you said something like if it was adrenals you'd be feeling absolutely lousy, and I said I was - that prompted me to do something. I think it was also you who suggested transferring to Dr Mackie before that. I think it's because I've had such a roller coaster PMR journey (and still on it) that I try and help others just as people have helped me. Many thanks x

I love that phrase - galloped towards you... you all then scooped me up and carried me through the dark times, and still do x

Thank you so very much for this "story". Recently I had got down to 2.5mg after eighteen months of taking prednisone. (I am sure I had PMR for almost that length of time before diagnosis) However, never without stiffness and discomfit, sometimes severe, which I had the stamina to bear. A few days ago it flared. I have gone up to 5mg. and am trying to hold there until I see what happens in about a week. My fear of taking more prednisone is that it will worsen my eyesight. I have elevated eye pressure with glaucoma. You have been so brave. It is an encouragement to me.

The replies hear could fill a book, just goes to show that recovery is much more complicated than Doctors let on !

PMRpro
PMRproAmbassador
in reply to Pastit

Some GPs may see enough PMR patients to gather everyone is different - but I will lay odds that rheumies don't. How many of them see a patient more than once or twice? Once to diagnose, possibly twice. But I was left to the GP assistant without even having a diagnosis. And then the patient is discharged to GP care, it's next to impossible to see the same GP all the time nowadays and they don't see the whole story.

Pastit
Pastit
in reply to PMRpro

Whole heartedly agree.

Bobbury
Bobbury
in reply to PMRpro

I would just like to add from my post, the best person I see and get more sense from is the practice nurse. Absolutely brilliant, compassionate, caring and above all, someone who wants to help and go beyond to ensure your looked after properly! Needless to say I always ask for the nurse and get seen quicker. My respects to all practice nurses!

MrsNails
MrsNails
in reply to PMRpro

My GP never believed l had PMR but could never offer a differential diagnosis or even any thoughts on what it might be.......

It was only when l got the 3rd Opinion that he apologised but he put me under a lot of unnecessary stress!.....

PMRpro
PMRproAmbassador
in reply to MrsNails

Mine just played dumb - I glared at him at one point and told him he needn't go into the realms of somatism or depression when he sort half suggested it. My mistake was going for continuity of care.

Jan_Noack
Jan_Noack
in reply to PMRpro

I still believed docotrs knew what they were doing at that stage. It was suggested depression to me in my thirtes and I went thru 5 horrible years of treatment with varying drugs.. and told give it longer. I reported weird side effects but none were passed on to any register..just blank stares like I was some nutter, though they now admit them..and all to treat fatigue and pain..told that were the exact symptoms if depression. Then I crawled into a German doc who also practised in Milan and London as well as Sydney's practise, and asked ran down the sators as I was crawling up then at age 40 and treated me for hypothyroid. That helped a lot but it was not fully the answer for me. She found the autoimmune antibodies to TPO and Tg but I've still not been tested for TSI or hyperthyroid antibodies..but I probably wouldn't have nay after 3.5 years of prednisone? anwyay I spent about 5 years "helping" on hypothyroid forums and depression forums. In those days I could express myself better in writing and found it much easier and my fatgiue was not as overwhelming. Funny how everything is depression. I wish I had not been so trusting and had tried more but it was very expensive to get to see specialists and testing and I just didn't see how anyone could help me at all.

PMRpro
PMRproAmbassador
in reply to Jan_Noack

In my late 20s I had something that nowadays would be identifed as ME - raised liver enzymes, extreme fatigue and weight loss that lasted about 6 months. By the time I saw a specialist I was starting to recover. It was 4 years before I could walk up the stairs without almost collapsing at the top. Later, mid 30s or so, my gynae suggested I try HRT for fatigue and low oestrogen levels, thinking it was perimenopause. It helped a lot. I stopped it 13 years later after yet another (false) scare - and within a year PMR turned up. Are they all different facets of a syndrome, or does one run into another? Or what ...

nuigini
nuigini
in reply to PMRpro

That's a very strange and suspicious medical history. "Or what" for sure.

tangocharlie
tangocharlie
in reply to PMRpro

I had a strange ME type thing in my mid 20s too, who knows if it linked to where I am now. The fatigue was over-whelming I remember.

Dewdrop456
Dewdrop456
in reply to MrsNails

Gracious,poor you. Why don’t some of these Doctors try harder? With all the high tec and world wide knowledge that is available they should have access to enough information to join up the dots!

Interesting post. Thank you for sharing. I had been going back and forward to the doctor for about 6 months with exhaustion and pain. Blood tests showed inflammation and then the next lot didn’t so the doctor said she wouldn’t put me on steroids. I have a friend who was able to get me some to try and like you within hours of taking 15mg it was a miracle cure!! I had never felt so amazed or happy. Drama when 2 weeks later I told my doctor the truth of how I was on pred. She was not happy!! She did however give me a prescription for pred. That was over a year and now I’m back to square one.

Hi I found out aI had GFR in December after losing the sight in my right eye (the hospital send me home on the 22nd said I had a migraine found out it was GCA on 25th, I was in shoptalk for 4 days on high dose predizone and then came home on 60 ML. The side effects were awful as I have ulcers as well. My doctor finally got me Actemra 2 months ago, inflammation down and hardly any side effects this is a great alternative.

SorrI was in hospital

I went through 6 months of agony, then discovered that a cortizone shot in the knee and, later, another one in the frozen shoulder brought relief to the whole body. I asked my GP if this was available in pill form and he prescibed prednisone. The agony turned to tolerable discomfort straightaway. I self diagnosed my condition and a Rhemu appt months later labeled it PMR. Now, 4 years later, I can't get below 8 mg without relapsing into higher discomfort. Hope it burn itself out soon, I hate being dependent on pills.

Thank you.It is a terrible shame that you had to suffer so very much. It is also extremely annoying that none of the Doctors tried hard enough to help you.Rediculous actually!

You help us daily and I will be forever grateful to you dear PMRpro

Thank you for sharing! Makes me feel better! I can really relate to taking prednisolone for the first time, by lunch time I could also walk up the stairs, too.

Pro, this has been quite a day on the HU site!! This must be one of the most popular posts ever!!! It was a story that needed to be told and you deserve all the accolades received. You have my undying gratitude and appreciation.

I'm not a great advocate going after the NHS through the courts unless there is just cause. But after reading many of these tragic stories, along with yours Pro, is there not just cause to do something about these inept doctors! If many of the Rheumatologists are inept then surely some kind of action needs to be taken. Lives are ruined, careers cut short, certainly lifelong financial implications for many. Not all of us are retired and put out to pasture. What it seems to amount to is malpractice - ignorance is no defence in the eye of the law as they say! Sorry I'm having a rant! Because so many of these stories point to real ineptitude.......I've also just been denied a refund for my flights cancelled because of the dreaded virus - and that is making me really angry - so to read all this as well has just refuelled my anger! 😠

123-go
123-go
in reply to MamaBeagle

I'm not surprised that you are angry.

It seems to me that there are some GPS who are, unfortunately, arrogant and can't admit that they don't know when all it takes is referral for a second opinion. They would gain more respect.

Back to anger! I don't think I've ever been so easily angered as I am since taking Pred. and mostly over what has fairly recently been described as "the burnishing injustices in society."

I have had PMR for 9 years. I have been up and down with my dosage because of so many STRESS flares!!i had been at 7 mg. For a couple years until I had to have a severe back surgery October 2019 which I was at 15 mg just trying to cope with the stress of healing and so much pain. I have only been able to reduce as far as 14mg. because at 13mg. I could not even get around. Sometimes you just have to think of your quality of life, (which you and I have discussed before, at 71 in September, and trying so hard to get around, I’ll take being on the dose that works!!

I can't imagine the horror of what you went through during those awful times and relieved for you that at last a way to manage your PMR was found. I have been so fortunate that my GP was a 'listener' and took me seriously, even apologising for the number of blood tests I had to have before the eventual diagnosis, only four months in my case.

Since that diagnosis when friends have said they haven't been satisfied with what their GP has told them, I have recommended they ask for a second opinion. We know our bodies better than anyone else.

What a painful saga!I'm glad you have a sucessful outcome, I thought I was the only one with long term problems re pred. I have at last managed to convince my GP that having been living with PMR since 2011 I am not able or prepared to come off it again. The rheumatologist last July decided that no longer should take pred and weaned me off and by late September I was off it completely.I was told to increase my strong painkillers instead.The middle of October I had a bad relapse and ended up in hospital for 2 days.My GP put me on 30mg a day for two weeks to try to get my body working again. I have now gradually over these last few months got down to 3mg daily but I have made clear to my GP that I would increase my dose each time I get a flare up and that at 80 years old my quality of life is the most important thing for me, she has finally accepted this so now I self medicate when necessary. Since the Lockdown I understand that I will be under another GP in the practice and Hope that I don't have to through all this again. I'm lucky as I have very few side effects just slight eye strain and cataract growing but very slowly.

PMRpro
PMRproAmbassador
in reply to Musicmaid

I have just watched the webinair with Prof Dasgupta. He said during it that he keeps patients on a low dose, 2-3mg, longterm and it seems to "keep it under wraps". I have never heard him say that before - but it is something I have said for a LONG time. I believe it was recorded so may be on the website later and the questions will also be on the site. I'm not sure if it was a reply to a question though.

nuigini
nuigini
in reply to PMRpro

Crap, I meant to join in on that! I do hope it gets posted.

PMRpro
PMRproAmbassador
in reply to nuigini

Was recorded and Fran will post the link.

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