Hi All, hope ye are doing ok.I was diagnosed with OMR in May 2020 and shortly connected with this forum then. I'm active in that I read my e-mails everyday and occasionally I respond or post. Sometimes I find it hard to muster up enthusiasm to write/post.
My concern today is I am having a bad flare, lots if inflammation)stiffness aches on my shoulders/lower back, past three weeks coming on but hit me full on this week. I'm on 6mg of Pred up to now having done the DSNS taper 7 week version. Started in May 2020 on 15 mgs and up and down a bit since then. Couple of weeks ago I actually thot that PMR was gone but of course it wasn't. I didn't stop taking Pred in this time and continued as per the taper regime. I have found that as I taper down my Osteoarthritis is getting worse. Is this normal? I now have also 'suspected' gout or septic arthritis on my right thumb. X-ray showed bone erosion. Doctor has now e-mailed my rhumatologist requesting urgent referral. Haven't seen rhumatologist since day I was diagnosed with OMR, 8th May 2020. Doctor felt that between he and I and this forum I could manage it. I was too until recently. Today I decided to go the 5 plus mgs fir the next 5 days bring me back to 11mg. Hated doing this but feel it was the right thing to do based on info here. My best place was around the 7.5mg) 7mg. Is this the best thing to do. Today was horrible. Apologies for this very long post. Looking forward to hearing back from you.. just turned 66 yrs Thank you
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lkcreedon
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You are not aiming relentlessly for zero. You are seeking the lowest effective dose, the lowest dose that gives the same relief as the original starting dose did. You establish that dose by reducing the dose slowly until the symptoms are no longer fully managed by the new dose and then you return to the last dose that worked well for you. There is no point choosing to be at a lower dose on the grounds of lower pred - any unmanaged inflammation left over will just build up over time until the level is reached that causes symptoms again. We liken it to a dripping tap filling a bucket over time.
The only way you can establish that the underlying autoimmune cause of PMR is no longer active is to taper slowly to zero without the symptoms returning. In addition, after up to 3 years on a dose of pred that is higher than the physiological level (what is in the body naturally) which suppresses production of cortisol, you cannot just stop taking pred - you have to taper to allow the return of adrenal function which take at least months, possibly longer.
At higher doses of pred, osteoarthritic pain is usually masked and as you get lower it reappears. You mention the possibility of erosive arthritis - it can often present as PMR so that is a possibility.
However - if it was PMR , you would appear to have reached your destination at 7mg, possibly more likely 7.5mg. Go lower and the symptoms will get worse whatever they are due to. If there is evidence of erosin in joints a rheumatologist may put you on a DMARD of some sort which is more suitable to manage inflammatory arthritis, But you cannot cheat the physiology - unmanaged inflammation causes damage and symptoms.
Thanks PMRpro for your excellent response. I do understand that I am not relentlessly tapering to zero. I have read it often enough on the site. I understand this. I will continue with my +5 and start tapering again from my 'best' place. Thanks again. I will let ye know how it goes. Waiting now for a rhumatologist review. Hoping it won't take too long. All the best. Have a lovely weekend 😊
I have found that as I taper down my Osteoarthritis is getting worse. Is this normal?
Yes in that pain was masked at higher doses of Pred , it may not have got any worse as such [although no guarantee] but without the pain as a guide you don’t really know. Have you tried Flexiseq for OA - not cheap but definitely worth a try -
Thanks Dorset Lady for your response. No I haven't tried it at all but am presuming it's OK to take with Pred. I will check out the link for Flexiseq. Thanks for that. As rewards the OA getting worse, perhaps that's not the case and it just seems like that as I reduce the steroid. Looking forward to getting a review done with the rhumatologist so I can discuss all of this. Our quality of life is so important and worth researching as best we can. Thanks so much.
I am experiencing the same problem. As I've got down to 2mg pred I seem to be developing arthritis in my left ankle and now left wrist. I'll definitely give Flexiseq a try, and I usually take Glucosamine+Chondroitin (away on holiday just now, and forgot to bring it with me). I've taken it for years but don't know how effective it is. Any informed opinions from you experts would be valued.
Just a little word from my experience. I have quite extensive osteoarthritis and the pain from it is quite different than what I've experienced from PMR. When I was tapering in 2020 I did get down to zero, and attributed any pain to OA, which I've been diagnosed with since I was 40, so 35 years ago, probably had it before. At that time I was definitely confused by what was PMR and what was OA.
Within a few weeks I had to start pred again, at a very low dose which I believed dealt with PMR but still had what I thought was OA. A few months later I was in so much pain and it finally occurred to me (I was being awfully thick!) that it was a lot like undiagnosed untreated PMR from the past. Took a bigger dose, miracle relief, asked my doctor to prescribe some 5 mg tablets, and for a couple of months was at a higher dose, closer to 7-8 than my previous around 2. Took a long time, but I'm back to the 2ish level again with NO signs of what I'd previously been blaming on OA. Yes, I do have OA, I see and feel it in certain joints, and am using Flexiseq and exercise to help it, but the PMR is under control. I'd like to think PMR is gone, but it will be a while before I'm ready to attempt another zero pred experiment again.
In my case, yes, my osteoarthritis has got a lot worse as I taper. I was told that the steroids masked it, just as DL has said above! It’s very depressing to get down to 1mg, but then to have far worse pains in hands & feet…but that’s life!! I only started using Flexiseq yesterday, so I can’t say if it helps, sorry!
Thanks for your reply. As you say that's life and we got to deal with it. Not sure if we have Flexiseq here in Ireland but I will check that out shortly. Will be going to see my rhumatologist when I can secure an appointment so I may look at other options then as well. All the best to you
I bought it from the Big A and you don’t use much at a time, I think it will last ages! I saw a rheumy with OA two years ago, she referred my feet to the orthotics dept, and they made me custom insoles, & my hands to a OA specialist, who issued me with various splints & gave me daily exercises. To be honest, there’s not much they can do, really! Have you read the Versus Arthritis site & joined in OA forums?
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