I was diagnosed 2015 PMR/GCA - responded to preds nicely. Rheumy and GP agreed with diagnosis.
Changed Rheumy about 2 years in, and new Rheumy wasn't sure about the diagnosis although it responded to preds - subsequently diagnosed seronegative arthritis, and fibro. SO despite ongoing increased pain, really over most of my body, fatigue and slowing down, still to continue to reduce preds 1mg month. Bloods had settled so they were not concerned.
My GP disagreed, and considered PMR/GCA to still be correct and i may/or may not have the other two.
So now having a severe flare, ESR and CRP higher than any I have had before and now on high dose of steroids - so my question is to you knowledgeable people, if preds has worked, pain reduced in all areas of my body, would this have helped fibro or inflammatory arthritis, or does this mean the pain is only related to PRM/GCA?
oh forgot - and Osteoarthritis diagnosed in most joints and spine too. (xrays confirmed) - much easier on preds if that is what the pain is relating to.
- thanks for any info.
Hope you all have a comfortable healthy weekend.
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lesley2015
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Depends how you define arthritis - inflammatory arthritis such as rheumatoid or psoriatic will respond to oral steroids. Osteoarthritis is something else altogether - but it is also now thought it may have an autoimmune component and the inflammation that is associated with it does also respond to pred. It is just they don't/won't use systemic pred for OA because the benefits don't outweigh the downsides. Injected steroids keep the effect local and avoid many of the side effects - but if the patient needs pred for something else, it will also have an effect on the OA
I know when I get a shot in the joint it helps the rest of the OA. But when I take oral steroids it doesn’t seem to help my body. I need this knee replacement so badly but my Ear infection returned and my white count is high. Fortunately the ESR went down to 16 on the 40 mg. I honestly don’t know what the next step is. Always seem to be between a rock and a hard place.
Oral pred takes a long time to deal with joint problems because the blood supply to the joint is poor but some seeps out into the system. An injection is fast because the pred gets straight there and undiluted.
It is all strange. I have had OA of the neck and spine much of my adult life. In 2016 , I had my first visit to a rheumatologist b/c of a new and different pain in my upper body that I never felt before. He started me on 16mg of methylprednisone even before getting blood tests back. Within 36-48 hours, I had NO pain, like magic . So it did address the PMR and the OA .
But the pain came back 7 mo. later when I started tapering the prednisone as recommended by a specialist at the Vasculitis Center at Johns Hopkins University in Baltimore, MD. who I saw for a second opinion after my rheumatologist diagnosed me with C-ANCA vasculitis. The professor at Johns Hopkins did not think that my titre was high enough to be diagnostic for C-ANCA vasculitis.
She thought of PMR, but was not convinced of that either b/c my CRP and SED rates were normal. However, from this forum, I know that is the case in about 20% of PMR patients. I would have thought that a professor at a premier university in rheumatology would have known that. Her opinion notwithstanding, when I returned to my rheumatologist my diagnosis was changed to PMR and was told to continue with the prednisone taper and was prescribed Methotrexate to be taken once a week.
A second rheumatologist and my hematologist were very against the Methotrexate so I stopped it. Was that a good decision? I don't know b/c it seems to be a standard treatment plan for someone with a rheumatological autoimmune disease to take low dose Methotrexate or another DMARD like Azanthopine during steroid taper and thereafter.
This is a big problem for patients who get caught in a net of conflicting opinions. I think for the most part, 27 months into prednisone, the upper body PMR pain is gone, but the OA is as bad as ever. I am down to 4mg prednisone now. I tried to continue the taper, but became so dysfuctional I resumed the 4mg. of prednisone even though it does nothing for the pain I am experiencing now.
The OA is also associated with a very severe scoliosis, degenerative disk disease, radiculopathy , loss of a joint space in the lumbar spine, etc. but it did not stop me from enjoying my life. I did everything from traveling to weight lifting, and working. Ten years ago, the OA pain flared up just before leaving for a vacation. An MRI showed facet syndrome. A pain management physician got me scheduled for a cold radiofrequency nerve ablation just before my departure, and the procedure worked like a charm.
Now, after a hard fall down stairs, my hips and knees are also keeping me in additional pain and interfering to some degree with my mobility. However, in response to another member's comments about PMR, I am aware that my walking is slow, and my balance is off. And that was present before I fell so I guess there are still remnants of PMR. After the fall, I am having a lot of problems going up and down stairs, and am limping. That 4 mg. of prednisone is now doing nothing for pain. So I feel between a rock and a hard place, and my quality of life is not good. I am wondering if I should raise my dose? If I ask my doctors, I will just get conflicting information.
It's all so overwhelming. I wouldn't count on more prednisone for your OA; if you try it, let us know. Good luck..
No I have no intention of taking preds for AO, but am already taking 40mgs for PMR/GCA but the confusion is that some of my other aches are responding, that Rheumy said wouldn't, so that was my query. However, at 5.30 am I am up, unable to sleep and tender all over so seem to have to take it day by day, like many of us do I guess.
I was diagnosed some years ago with fibromyalgia. When I went on Pred for the PMR three years ago all this other pain went! So was it not fibromyalgia? Or does it respond to steroids!? I mean I was in severe pain all over. All very strange.
Arthritis needs to be categorized as OA or RA; (there are other types like psoriatic arthritis); steroids definitely are given to patients with RA and now there are all kinds of prescription drugs advertised on US TV for it; OA is age, the wearing down of joints over time from use, injury, etc.. Our joints are part of the "machine" of our bodies that wear out with age and time. RA is an autoimmune disease that can affect young people; OA is not considered an autoimmune disease; some people are helped by Motrin, Advil, Naproxyn which are anti-inflammatory too, but do not contain steroids.
I work with two people who have Fibro but after discussing health concerns with them both had no raised levels of inflammation in thier bloods .
After consultations with thier GP both where put on Steroids for PMR and both are 80% pain free .
and as Fibro doesn't respond to Steroids we can only come to the conclusion thay where wrongly diagnosed .
As for myself I do sometimes have tenderness in arms, side of body side of legs and various other places when touched but go months without any problems .
I do have lymphomas and just put it down to this which my GP agrees with.
Thyroid levels are sometimes ignored which can cause aches and pains .
I have had DX fibromyalgia for 15plus years. Pred does not touch the pain of that, it helped OA in my hands and neck A BIT in that they have returned with a vengeance at 6mg. But fibromyalgia untouched. I take painkillers and did take amitriptyline for fibromyalgia but the PMR made itself well and truly known 5 yes ago breaking through 800mg tramadol and 4 X 500/30 co-codamol and 20mg amitriptyline a day. I never had inflammatory markers in blood test prior to PMR. If I was 80% pain free I would skip down the street. Literally. I miss a good skip.😁
I have had PMR for 7 years now (at present on 4mg) and I had arthritis in my hips too. Right from the beginning Cocodamol helped the pain of both. Why I don’t know! Later I was diagnosed with seronegative polyarthritis (which IS helped by pred & dmards).
We are all different. Hope you find some relief soon.
I'm sorry to hear that Lesley,I would go by what your Gp says.I don't know about fibromyalgia or the arthritis but if you felt better on the prednisone surely it was pmr.I would ditch the rheumy too.
It wouldn't have helped fibromyalgia - and fibro wouldn't have raised the blood markers either since fibro is a problem with pain perception by the nerves trnsmitting pain signals but the brain not decoding them correctly (so to speak) as opposed to inflammation. Everything that has gone away with pred is NOT fibro!
Higher doses of pred WOULD improve pain from most forms inflammatory arthtitis (rheumatoid and so on) and pred is often used to manage flares of these while waiting for a change in DMARD dose to kick in. Whatever anyone tries to tell you, it isn't true that PMR/GCA are the only things that respond to pred, so do most other inflammatory things, including OA:
And as I've just replied to Nap, osteoarthritis is something else altogether - but it is also now thought it may have an autoimmune component and the inflammation that is associated with it does also respond to pred. It is just they don't/won't use systemic pred for OA alone because the benefits don't outweigh the downsides. Injected steroids keep the effect local and avoid many of the side effects - but if the patient needs oral pred for something else, it will also have an effect on the OA.
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