PMRGCAuk
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Advice please

Hi. I'm Sarah, I'm 56 & last Autumn I got PMR.

First, thank you to all of you who participate in & overview this forum. It has been a lifeline.

Early last November, after a month of sheer hell in rapidly increasing pain & ever more severely restricted mobility, I was diagnosed with PMR by my doctor. After 3 days of Prednisolone at 15mg the difference was almost miraculous. For weeks I improved noticeably every day. My ESR & CRP went from very high to normal.

Then I got a cold at Xmas & the PMR stopped getting better. It has been up & down ever since.

At my Dr's request, I tried to reduce the Pred a little, but immediately deteriorated, so went back to 15mg.

I was referred to a Rheumatology Specialist at the beginning of Feb. She said that my continuing symptoms don't make sense. Wondering if the PMR had triggered Rheumatoid Arthritis, she arranged xrays of my hands & feet, but they don't show anything unusual. An ultra sound showed that my shoulder is damaged & the tendon narrowed, but again there is no sign of RA. No sign of RA in bloods either.

The Rheumatologist said that I have to get the Pred down & suggested alternate days on 15mg & 12.5mg. Within 3 days I had deteriorated severely so I stopped the reduced dose. I had terrible pain in areas that hadn't been affected before. I continued to get much worse for a fortnight & after that still deteriorated slowly for a further month. By then the PMR was much, much worse. It has taken me months to get back to where I was before. All this still on 15mg Pred.

I've not suffered any stiffness & little swelling, (initially I did have some swelling between finger joints & on the side of my foot) just bad pain in my arms, legs, shoulders, knees, the palms of my hands, some of my fingers between the joints & only after trying the 12.5mg reduction, my feet. My legs & arms are extremely tender to touch. My hands are pretty useless & often shake & my circulation has gone completely to pot, particularly in my feet & hands.

The Rheumatologist wants me to reduce the steroids & go on to Methotrexate, neither of which I am happy about. I see her again in 2 weeks & I'm really worried about the appointment.

Any advice would be much appreciated.

Thank you

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I expect you are worried because you have lost faith in your doctor and Rheumatologist. You were taken from a place of relative comfort to a confusing collection of symptoms, by a reduction that sounds too rapid and too steep. Surely it is counterintuitive to reduce your dose when you are experiencing symptoms?

I also wonder if your “cold” was a little more than the common cold, because it halted your progress so much. Viruses often do and we tend to stop tapering until they are better.

Personally, I imagine that I would have responded in the same way to your set of circumstances and treatment. I wish in a way, that you could start again with 20 mgs of Pred waiting for symptoms to settle and then reducing by 1 mg per month until 10 mgs is reached then 0.5 reductions monthly after that. Of course I am not a doctor, never mind your doctor and I don’t know your medical history or test results. I have had a PMR diagnosis since March 2016 and have experienced gathering symptoms for longer. I can imagine, with experience, how I would feel under your treatment regime. I am currently at 7 mgs and this is the first time I have had difficulty, having started at 20 mgs. I think that I have got some kind of virus now and won’t be reducing any time soon. Everybody is individual but if your doctors have discounted other culprits, then PMR should be treated in the classic way with small, very gradual tapering of Pred when PMR symptoms are stable.

I hope this is of some use. Your disease may well have some years to run yet and the aim is to find the lowest possible dose that will manage your symptoms.

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I think it’s important to differentiate between steroid withdrawal (days 1-3 approx) and returning symptoms ( days 7+) Its difficult at the beginning to understand the differences, but helpful when you understand them.

“At my Dr's request, I tried to reduce the Pred a little, but immediately deteriorated, so went back to 15mg.” That might have been SW and paracetamol might have helped, and it would likely have eased mid week.

My GP had me drop from 20 to 15 and I put up with it for a month with symptoms creeping back. Back to 20. It was simply too big a drop and the inflammation slowly got the better of me.

I then did 17.5, 16, 15, and was alternating 14/15 when my rheum insisted I drop to 12.5 immediately. Yup, you guessed, symptoms came back. Up to 15. I then dropped by 1mg at a time, but did it too quickly and flared. Now I have slow plodded 14,13, 12, 11, 10 and now 9. I take 4 weeks at each dose. And this slow plod is the only way I am actually achieving reduction. What’s the saying? “More haste, less speed!” This absolutely applies here.

I had slight finger swelling pre pred ( not joints) I couldn’t get my rings off. But that soon resolved on pred.

I don’t recognise ‘painful to touch’ as PMR.

Painful hands, cramping? Try potassium and magnesium, or a daily banana solved mine.

No circulation to hands and feet? You need doc to check your pulses.

Try toggling 14/15 for a week then drop to 14 for 4 weeks. It might not be what the doctors want, but is a reduction. If I had done 1mg/month from the outset I’d have been roughly at the same place, but would have avoided angst and pain.

And if you don’t want methotrexate, say no! YOUR body!

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Hi Sarah,

Sorry to hear what started out so well, has ended up such a mess.

Like Jane, I would be inclined to think maybe your Christmas cold was more serious than you though. And rather than reduce your Pred, it might have been wiser for your GP to increase it slightly, or at least leave it as it was!

Unfortunately your rheumy doesn’t seem to understand PMR all that well either. You need to be on enough Pred to do any good, and although 15mg is the recognised starting dose, sometimes it’s not enough especially with another spanner in the works (your cold and a long miserable winter). Plus I think she rushing you into the Methotrexate without giving the Pred a fighting chance.

I understand your apprehension, but I think you need to try and persuade her to give the Pred a chance, and maybe consider the Mtx at your next appointment if things haven’t improved by then.

Good luck.

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Toggling doses is a recognized way of reducing, but certainly never by 2.5 mg. It doesn't give your body a chance to adapt. Try the dead slow nearly stop method, or possibly tortoise and hare. Both of them provide a smooth way for the pred dose to be reduced gradually, minimizing the amount of pred withdrawal you'll experience, and making it much easier to find the lowest dose which continues to manage the symptoms well.

healthunlocked.com/pmrgcauk...

BUT before you try to reduce again make sure your symptoms are fully controlled as they were in the beginning.

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Hi sosarah

It sounds a familiar pattern. As others have intimated tapering is a delicate balancing act. Something i didn't appreciate the first 6-8 months when I kept reducing as per Dr and like you ended back at 15mg and with rheumy. I I was 55 that year...2016. It is important to identify what your steroid withdrawal symptoms are. Mine is deep pain in right shoulder mainly and starts within 24hrs of the drop. I take extra painkillers for a couple of days and it goes. This happened and I didn't know then that there was such a thing as steroid withdrawal. My 'flares' are marked by burning painful thighs and upper arms 2 to 3 weeks after the drop. When I say drop it has always been a maximum of 1mg per month and in the main only 0.5mg. A 2.5mg drop would be unfeasible. I had all the xrays and blood tests for lupus RA etc with negative results. I was prescribed a steroid spared 12months after dx. I decided to give it a 3 month trial. The first month to 6 weeks when the dose was being built to max for me were dire. I am down to 9mg now coming up to 2 years in. I am still not sure if the SSA is helping much but I missed a dose once and felt terrible.... could have been withdrawal but don't know. In June it will be a year since I was put on it. If I have got to 6-7mg and are 'ok' I will reconsider as I am happy to be on 7mg or less for as long as it takes. It's a big decision to make for you. Just read what you can and please tell drs Dr you want to try much slower taper by 0.5mg or max 1mg. Good luck. 🌻

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Tell both of your doctors that Pred is not a cure for PMR, it's a treatment. You need as much as you need to keep symptoms and inflammation in check. Reducing too fast and too steeply is not treating the condition. It's allowing the condition to run on unchecked. Your bloods will come out with a low or no inflammation rate most likely because the Pred is keeping it in check, although some folks report that their bloods were always clear even when their symptoms we at their worst. It's also a lagging indicator, meaning it will show where you were a while ago, not where you are today. PMR also runs in years - from 2 years to 6 years - sometimes longer. Lots of things beside Pred can influence inflammation - from too much exercise to not enough sleep to nutrition to stress to viral and/or bacterial infections. That's why symptoms are considered the determining factor, not bloods. If, after a few days of a reduction, your symptoms have not eased, it's not withdrawal, it's not enough Pred. I found out the hard way, and the early course of my condition was almost exactly what you desrribed - including the swelling between the joints in my fingers and the stiffness, pain and selling in my feet.

And you can tell your doctors that you can have PMR or RA, or PMR and RA. But PMR does not "become" RA. The symptoms can be very similar at first. RA won't show up on xrays for a long time. But RA is in the joints. PMR is a vasculitis, which is why your muscles hurt.

What worked for me was to go back to the 20mg where I experienced relief and sat there for 3 months. My doctors were wild but I told them I was far more frightened of the damage the inflammation could do than I was of the Pred side effects, and that I could sue them just as easily for one as I could for the other. I "dropped a full 60 day bottle of pills down the drain by accident" and got a refill so I had enough to take control of my reduction. Thereafter, I used 5mg and 1mg pills and dropped by no more than 1mg per month in total, going down by 0.5 for two weeks at a time. I moved on to the next reduction only if I felt relatively well. I sat still at the current dose, or went up 1 mg or 0.5 mg, when the holidays came, when I caught a cold, when the weather was going to make a day physically challenging. I started reducing from 20 mg at Labor Day and am now reliably at 9, and managing pretty well.

I get plenty of rest. I rest for at least 10 hours every day, and I don't wander far from the couch at least one whole day on the weekend. I take my vitamins and eat a healthy diet (always have). I don't always do everything I want to do, but I don't do anything I don't want to do (or can get someone else to do). Read up on spoons and gorillas here on the site.

I'm not a medical professional, and I do not recommend that anyone should follow my advice or my methods, but I know my body and myself very well. I've done a lot of reading here and elsewhere, collecting both patient experiences and medical papers. I am very precise with the plain English language I use in talking to my doctors, and I am very assertive and insist that they listen to me. (It took a while, but finally they're listening to me).

Autoimmune diseases are notoriously difficult to diagnose. Test can eliminate some things from consideration, but may not be conclusive especially if the results are negative. And sometimes they can be misleading, because you can test positive for RA without having RA (though symptoms also can show up years down the line). We just don't know enough.

Listen to your body and make your doctors listen to you. Bring them the articles you have read, including those discussing tapering plans. If they still won't listen, find a new team.

Useless suffering is useless.

Let us know how you're doing. We're all here for you - even just to chat.

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Hi Sarah,

I had the same magic reaction to prednisone as you did at 16 mg in about 48 hours and felt quite well, and pain free for 7 months; some doctors take that type of reaction as a diagnostic indicator of. PMR. Then I got a bad cold which took 1+ month to get rid of. I had normal SED rates and CRP, but was PR3 antibody or C-ANCA + at low titre. So I am not convinced in the diagnoses either.

I do not have visible swelling of any joints ,except on scans which show degenerative arthritis of my spine, all vertebrae. But I started with severe muscle pain in my arms, upper back and neck, wrist and hands which came on very suddenly.

Again, like you, the (doctors) want to rush the taper now, and the thinking is that it is easier to taper off prednisone while you are on methotrexate. ; ie. that methotrexate is a prednisone sparing drug. I am on 15 mg. Methotrexate one time a week (6) (2.5 mg tablets) every Monday.

I cannot say that I have had any terrible side effects to Methotrexate after 6 weeks except some mild tinnitus. But since I had an episode of temporary vision loss in my left eye around the Christmas holidays, and before Methotrexate, I did not understand the rush to taper off Prednisone at that time.I understand the side effects, but methotrexate is toxic to the liver as well in addition to the negatives of Prednisone. It seems like Prednisone is out and Methotrexate is in.

And every human being reacts differently to any drug.

I wouldn't be afraid of the methotrexate now, and probably would have declined it if it hadn't been for the vision loss which is a symptom of both GCA( which often goes with PMR) and systemic vasculitis. And b/c , I have not been worked up properly for GCA (no angiogram of head; no biopsy of a vessel), I am leaving that practice.

We know our own bodies. Neither of us are on very high doses of prednisone; I am managing at 12mg + methotrexate. Pain is minimal, but fatigue and lethargy terrible.

I will be changing doctors because. , although a rheumatology practice, the chief of the practice admitted to only "having come across "a c- ANCA +case twice before in many years of his career; he is rarely there, and has delegated care to a Physician's Assistant and a young inexperienced family care doctor. So I will be out of there and now would feel safer with an ophthalmologist, and a hematology consult because my white count is very high ( which could be the Prednisone or the GCA, or both,, and a different rheumatologist.

Important to remember that, as the patient, you are in control and doctors are not gods . You might ask for referral for a 2nd opinion if you do not feel comfortable with your doctor's plan. Any confident doctor should not object to, or be offended as to a 2nd opinion. If she is, run!

Good luck to you and best regards .Keep us in the loop.

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Sorry, addressed you as Sarah, not SoSarah.

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