I finally saw a rheumatologist on September 10th. She advised I continue to reduce and for the last 3 weeks I have been on 7mg of prednisone.The blood tests came back normal and in her opinion I may be treating arthritis with prednisone. Which is a no no apparently. She warned of the risk of heart attack with long term pred use but at the moment I am in so much pain and so tired I’m willing to risk it!
I am really conflicted because I am in so much pain - knees, shoulder and 1 hip. I can’t remember how much pain I was in prior to diagnosis in March 2020.
She gave me a blood test form to complete in the event of a flare
So do I take it and risk confirmation of arthritis?
Thank you again for allowing me to share!
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AnniesRyder5
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well that doesn’t mean you don’t have PMR -many don’t have raised markers -did you initially? Or symptoms are there, but blood markers very often lag behind.
If she thinks it osteoarthritis arthritis-which is possible as well as PMR (pain is masked on higher doses) has she offered X-rays to confirm on hip and shoulder(s).
Or is she suggesting rheumatoid arthritis -if so that requires blood test to confirm.
Think you need further investigation-and a more informed doctor.
Plus of course at 7mg, your adrenals need to think about waking up-so that makes life a bit more difficult for some - so reducing slowly.
I have contacted the GP to request an X-ray of my hip because that’s the most troublesome and i planned to offload my other concerns at the same time. I have been given a telephone consultation on october11th!
I honestly feel so frustrated with the whole process
What SORT of arthritis? What test has she requested?
Were you pain-free (or acceptably so) at higher doses? When did the pain return? Is it in muscles or just joints?
I'm not impressed by her either, Blowed if I can see why treating arthritis with low dose pred is a no-no - possibly not ideal but rheumatoid arthritis is still sometimes managed with low dose pred (she could read it in the literature). All pain relief increases the risk of cardiovascular disease it is said.
thank you, the pain has become really bad in my shoulder. I did another blood test yesterday at her request when I rang up to report a flare. It’s annoying though that they don’t let me know the results - I ring up and get a letter 2 weeks later.
That isn't on - though they probably wait a week for the result if they don't chase it up.
Shoulder pain in only one arm is less likely to be "just" PMR - could be something more specific. It is a bit of a daunting thought - but if the pain is getting severe, a trip to the ED MIGHT get you an x-ray and proper examination to rule out other causes.
in that case right shoulder may have other issues -at lower doses other pains previously masked by the Pred resurface…osteoarthritis maybe? Request a X-ray to check..
have they even attempted to treat this with naproxen.? That is what they put me on and works great, I only take one 300 mg about every five to six days, I reduce eating carbs that create inflammation and my cousin takes a far higher dosage twice a day to control inflammation and pain.
I managed to ween myself off of prednisone at the end of year two, which was good, my. Own doctor said that in her opinion I did not have PMR and longer, but normally what developed as a result is some form of arthritis, in my case, osteo, so she prescribed a low dose of naproxen that I can take when needed to manage inflammation, aches and pains.,..and funny, but now I finally have a rhuematalogist
that sounds really positive because until PMR was diagnosed I had regular bouts of Crohn’s disease over the years which is another inflammatory ailment and treating me with pred also kept the Crohn’s at bay
So just maybe the rheumatologist will prescribe naproxen
The problem with all nsaids and for that matter also pred, is they interfere with cartilage renewal. I believe when possible OA is better treated by physiotherapy to strengthen supporting muscles, thus relieving strain on joints. Also non-medicated rub Flexiseq, which acts like wd40 for joints! Glucosamine can also be helpful.
I agree with PMRpro and DorsetLady . There is a lot of literature supporting the use of low-dose prednisone to treat arthritis, not just PMR. Prednisone has been demonized over the years due to side effects and dose reduction challenges. There are side effects with all drugs and many people are perfectly willing to deal with prednisone side effects and "risks" because it works so well. Your quality of life is important!! Suffering needlessly makes no sense. Blood tests are not proof...just one tool in the toolbox.
there are days when even the thought of struggling to get below 7mg and going back to that all over body pain- if that’s what 0mg will deliver - makes me quite scared - let alone actually getting off pred altogether.
the ramp off prednisone is slow but it is worth it to get of the dependence of the drug. i had gout issues when i finished, a form of arthritic inflammation of the joints. on new meds now and getting better every day. I would follow your medical advisors on the paths you might have to take. I hope the pain goes away or can be delt with successfully. Hang in there.
My caveat is that normal inflammation markers really means nothing without context. When I was ill enough to think I might be dying I was told my markers were normal "for my age", including by the doctor who diagnosed me. Pred is doing its job if your markers really are normal. I have since blamed pain on only arthritis when it turned out to be a major PMR flare. The doctor may be right, but could just as easily be wrong. In my experience, such as it is, a very low dose of pred which controls PMR may no longer be helping OA. I've no experience with RA. Only you will know when PMR is gone, and I think if you're in doubt, listen to your doubts.
I think you are on the right track asking for further 'proof' of diagnosis and explanation for your discomfort. You've heard from the champs...I can say no more except that I recently dropped my primary care doctor.....they just don't have the right to make these sweeping "God-like" statements with no real explanation!!💞
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