PMR.. Osteoarthritis...

[yogabonnie]

I went to a rheumatologist... first let me say I have been on prednisone for nearly 8 years. and have been under 5 for much of it. I was at 2mg. went down, and flared and back up to 4mg and finally back to 2mg. where I stayed..until I saw rheumatologist. She said )wrongly that PMR only lasts a year and the I need to go down to 1.5 for a month and get back to her. I have done that. and I have had a lot of pain.. well, pain in the morning all over.. which she said I should expect as I have a great deal of osteoarthritis in shoulders and hands and prednisone has been masking the osteoarthritis . Tylenol. Paracetamol HELPS IT. .. so I am thinking she is right. Perhaps my PMR is gone. But I wonder if taking Paracetamol or an Ibuprofen after prednisone is gone. might be worse than a couple mg. of prednisone_ ? any thoughts. She suggested a drug called. sulfasalazine and getting off prednisone. Anyone know anything _? thanks all.

[SnazzyD]

Sorry, I must be a bit dim. If she thinks your PMR is gone then why is she suggesting Sulphasalazine?

Did you have widespread osteoarthritis before your Pred journey?

[yogabonnie in reply to SnazzyD]

I have had osteoarthritis. wasn't so bad before. I was 71 when I got PMR. and hands have progressively gotten worse. but never had x ray of hands or shoulders until recently which shows lots of osteoarthritis. having carpal tunnel surgery next month. but that is another issue I guess. I dont really even know what sulphasalazine is..like methotrexate? I hate to take yet another drug... (prednisone hasn't done any damage for me so far but thin skin! )

[SnazzyD in reply to yogabonnie]

Yes it is a bit like Methotraxate but not the same. Some people on this forum have had docs suggest it for PMR but it is more usually used for rheumatoid arthritis. So if your doc says PMR should be gone by now and to get off Pred, I don’t understand why they are suggesting this.

versusarthritis.org/about-a...

Does Paracetamol help all of your pain or bits of it?

[PMRpro Ambassador]

I'm obviously as dim as SnazzyD - sulphasalzine is a DMARD and as far as I know is no use in osteoarthritis, it is used in several forms of inflammatory arthritis. It requires monitoring by a consultant rheumatologist.

If I had the choice between starting an unknown DMARD which has no role in either PMR or OA and continuing with 2mg pred on which I am stable I know which I'd choose!!!

She obviously knows nothing about PMR - and I'd question how much she knows about ANY rheumatology. Go back to the PCP who I assume has been treating you before you saw this person.

[HeronNS]

I'm with PMRpro. You know I was on pred from mid-2015 to February 2024, with the same kind of ups and downs but usual low dose like you. Never saw a rheumatologist. Yes, aspirin helped me a bit - I would notice if I took some for a headache - but by no means was enough, confirmed by a major flare I had in early 2021 which I in fact blamed on OA for some time until in desperation took increased pred and - miracle, just like in the beginning!

Probably the rheumatologist feels she needs to justify her existence by fiddling with diagnosis and treatment. But you already know what works, and people like me can demonstrate that one can survive low dose pred for close to a decade, and almost certainly longer if needed.

[Grammy80]

After my recent flare~~~I'm a big believer of staying with the devil you know rather than fool around with one you don't. I would (and I personally will) HUG the dose of prednisone that gives me a decent quality of life; why travel down an unknown medicaiton road? Do what you know will work for you....would be my penny's worth~!💞

[SheffieldJane]

These rheumatologists make me tired! Trotting out their ignorant opinions.Reading about the potential side effects of Sulfasalasine was frightening and didn’t seem appropriate anyway. I have had these diseases for 8 years too and can only get down to 5 mgs. I would be overjoyed if I could get down to 2 mgs, overjoyed!!! I agree with all your correspondents, they put it better.

Currently stuck in a cycle of Covid, sick day rules, and Covid + repeat. At last a series of tests with a view to attending a Covid clinic, who knew? If I try to get below 5 mgs, I feel terrible.

Wishing you well Bonnie. X

[yogabonnie]

hi. Jane. thanks so much. you always make me feel better!! hope you get out of the cycle. and get down. going from 2 to 1.5 has been rough but I noticed by afternoon the pain hs gone with tylenol and time I guess. and the Pain is not in my shoulders and biceps. but mostly my hands. so I am carrying on. but no more for now. !!!!

love... Trotting out their ignorant opinions!

[powerwalk in reply to yogabonnie]

Yes seems very weird to want to put you on that med. Hands are an issue lately for a few of us. I too would be delighted to get to 2mg after 8 years but cant get there. I gave in and put it up from 5.5 to 6 yesterday as i literally got panicky as ive been feeling so unwell. You're doing great. Let us know how you get on.

[Bcol]

Hi, so glad when I read these posts that I've never had a Rheumy. Agree with pretty much already said. As far as I've been able to tell taking Pred has never helped with my OA, during Covid times it did, at the right level, keep my CTS under control and pain and symptom free, but I am awaiting surgery for that on both hands/wrists. If taking Pred helps with your pain and QOL then I don't see that taking it, at that level, is a problem. Ibuprofen never did much for me and the only things which really worked for my OA were Naproxen 500mg (think that is Aleve in the states) and Co-Codamol 30/500 (Tylenol 4 I think). Both are prescription only at that strength. Can't see that Sulfasalazine would be any help unless you get a diagnosis of RA. Hope all goes well.

[yogabonnie in reply to Bcol]

hi. I had an anaphylaxis shock to Aleve ODDLY enough about 30 years ago... so have never tried it again. No other allergies really. It was quite a surprise and had to be the aleve since it was the 2nd time I had taken it and it was 5 in the morning and nothing else in me . taken to hospital. with epi shot and then prednisone then I was fine after sleeping 16 hours on the gurney. ha. they didn't make me go home!

[Gimme]

None of that advice from your doc makes sense to me. It just convinces me even more that so many rheumatologists live in la la land. They seem willing to tell us anything to get us off the dreaded pred that they fear so much. What does she think that the sulphasalazine is going to do? I would discuss it with your GP, if I were you.

[AtopicGuy]

Osteoarthritis is wear & tear of the joints, so anti-inflammatory drugs will only help if the damaged tissues have become inflamed. This can happen when the immune system tries to repair things that are beyond repair. By contrast, rheumatoid arthritis is an autoimmune disease, so it responds to both steroids and NSAIDs (non-steroidal anti-inflammatory drugs).

[yogabonnie in reply to AtopicGuy]

thanks for that! and to tell if it is Rheumatoid arthritis there are tests_ markers etc yes?

[AtopicGuy in reply to yogabonnie]

Both osteo- and rheumatoid arthritis are usually visible on one scan or other (x-rays/CT/PET/MRI/Ultrasound). There is no blood test for osteoarthritis, of course. The link below lists some blood tests used to diagnose rheumatoid arthritis (including CRP & ESR):

nhs.uk/conditions/rheumatoi...

None of the tests are perfect. Some patients are diagnosed as "seronegative".

[nuigini]

My body is full of osteoarthritis, shoulders, thumbs, knees, back, and feet. I find that taking slow release Tylenol arthritis or Tylenol joint and muscle tablets on a regular basis controls the pain, I know it if I miss a does. When I get a flare of arthritic pain I switch to Ibuprofen for a short time to get things under control. Even at 15 mg and above prednisone has never controlled my arthritic pain. Maybe it's all in my head, but it works for me,

Prednisone may be effective for rheumatoid arthritis, and cortisone injections for joint pain and inflammation, but these are different matters,

[yogabonnie in reply to nuigini]

thank you!!