Hi, I was on Pred for almost six years. Three months ago I managed to stop completely. It was a very very long process to actually quit. Very gradual reduction, basically slow death taper . My question is, I’m feeling pain in arms again and overall wasting feeling. During the three months without Pred I was not feeling well, but since I also have fibromyalgia , I was thinking it was all Fibro. I have to mention that for two years I had NORMAL ESR and CRP. Last Thursday I went to see Rheumatologist and she congratulated me on stopping Pred . My ESR and CRP came elevated again. Not hugely elevated but not normal. I decided to take 3 mg again and Voilà! Feeling better. Not perfect, I have Fibro too, but better. I’m asking you knowledgeable ladies with so much experience , what would be the best route to take now. Thank you dears!💐
unsure how to proceed…: Hi, I was on Pred for... - PMRGCAuk
unsure how to proceed…
Like you have fibromyalgia which we are told dosen’t respond to steroids…..oh yes it does…..not supposed to now have PMR any longer, but I know different, keeping on pred for quality of life…. Well some sort of quality! Good luck
Thanks! It feels like it does respond. But my inflammation markers are elevated again after two years.
You might be told you have fibromyalgia but that might not be true. I'm sur eso many people are just dismissed with a catch-all diagnosis of fibromyalgia when actually they have some kind of inflammatory or autoimmune disease, possbily PMR, possibly something else.
@Alliswellforever, my advice to you would be to get a second opinion from a different rheumatologist, stick to your guns, say it still feels like you have pMR, and ideally have a PET CT scan to see if you do still have PMR. I was in a similar postion 7 years ago, was told adamantly I couldn't possibly have PMR, that it must be fibromyalgia, but then voila, a scan showed quite clearly it was PMR.
Yes, I agree, wish I knew other diseases that fits the bill to look into. Your advice to@Allswellforever is correct, having a thorough Rheumy he gave me a PET scan, which showed no inflammation, hence Fibro!.....but is it?
How are you?
If every doctor understood how FDG-PET/CT scans work, they wouldn't go around claiming it will find every bit of inflammation. PMR is believed to be a form of vasculitis because of its close link to GCA; but only in extreme cases do the diseased blood vessels reveal themselves. If they did, the cause of PMR would not remain such a mystery.
Goodness me what a battle you have had....I admire your tenacity. Lots what I read made me angry, like because one consultant won't refer, neither will another....You are right about scans but I don't have the knowledge you do, so have to accept what I am told...will look up Polymyositis, like you I need answers, I won't give up looking for them....and sure you won't either! good luck, keep us posted....
Thank you, I have seen 7 Rheumatologists in total. I have moved to a different state 3 times, that’s the reason. All drs say same thing. I even had a Rheum nurse told me two years ago that she bet I had Multiple Myeloma. She even referred me to Hematology Oncology. It’s been crazy and wild. When I repeated the test that was suspicious it came back normal and she insisted and said, “I put my money in the bucket that you have MM” imagine my surprise and terror. I found a better Dr and never saw the idiot again. Since I had normal CRP and ESR for two years, I slowed down Rheumatologists visits. Here I practically have to pay full visits because the insurance sucks. I’m talking about around $200 to $300 or more dollars each visit plus blood work, plus X Rays that I had with the brilliant nurse that added up to $2000 US dollars. Yes, it’s insane. I’m so tired of the incompetence. Lol, thanks for letting me rant ! Blessings
Can you please tell me how the scan discovered you had PMR?
A PET CT scan is an advanced type of scan where you are injected with a harmless radioactive dye which goes through your body, then the scanner picks up areas of inflammation and things like cancer. It is sometimes used to check for PMR and LVV (large vessel vasculitis) but not they're exensive and not a routine thing, rheumatologists can order them but not GPs. In my cae the scan showed classic PMR inflammation in shoulders chest and hips
Particularly in old age, it's very common to have a collection of symptoms that cannot all be categorised under one disease. There are millions of fibromyalgia sufferers who wish it responded to immunosuppression. Sadly, it doesn't. Perhaps you have a bit of underlying rheumatoid arthritis or PMR?
It is surprisingly common - as long as you are taking even 1/2mg, the dripping tap of very low disease activity can't fill the bucket and overflow. Zero is a step too far.
I would say do our flare protocol: add 5mg to where the flare occurred for 7-10 days and drop back to just above where the flare appeared, 1mg in your case, and see how you go.
Thank you, that’s the plan.
If pred is doing what it did for you when you had PMR, well I think you've answered your own question. I had a brief flirtation with zero in 2020, only six weeks in my case, and back on pred. I do not, however, have a confounding second diagnosis is what is confusing matters in your case, so after I stopped blaming arthritis it was an easy decision to make. Also my CRP went very high. Finally in February of this year I achieved zero again, and so far it seems okay. I'm a lot older than when I first got diagnosed, nine years ago, and certainly not 100% pain-free, but have none of the feelings of illness that untreated PMR gave me, and none of the telling symptoms (e.g. pain causing difficulty getting out of bed in the morning). Good Luck!
Here Drs want me to stop Pred at all costs, and I understand but I am practically certain I have Fibro too because of childhood trauma. It is known that early life trauma is a huge factor in developing Fibro. I have had all over pain for more than 30 years. So it all started way before PMR. A PET scan would be great but as I explained in my reply, I very much doubt the ‘insurance’ would cover it. It’s not an easy situation. Thanks again!
Does pred deal with any of the pain?
I think it does. Mostly to the pain in arm sockets and around it. I take a lot of ibuprofen too, so something is helping!
Be VERY careful with all that NSAID intake. You shouldn't be taking them together, You can take one or other with different painkillers like paracetamol or codeine but not 2 NSAIDs or you are at risk of gastric damage.
nhs.uk/medicines/naproxen/t....
Yes, I take 800 mg Motrin for 8 hours. Tylenol shows up on my liver. I know, it’s a struggle …
I understood wevwith pmr or ? Were not suppose to take any other anti inflammatorys as in ibuprofen, has your dr suggested ibuprofen and approves, any side affects?
Yes, all of them approve Ibuprofen . I’m getting a little worried now
Hmm that is ofd, do you take meds to protect stomach?
Yes, Nexium
I was 6 years on Pred too. I managed to come off completely in Feb this year. Felt good at first then things started to happen. First Severe Caroel Tunnel, Waiting for Op. Then 2 torn cartilages. Waiting to see specialist. My upper arms and shoulders started to ache a few days ago and has spread to my legs and bottom. My fear now is the return of PMR. 😊
February to now is a common timescale for very low disease activity to build up enough inflammation to cause symptoms to reappear. 1mg will hold it at bay - zero is a step too far.
Thank you but think GP will not want me taking Pred. Will pay her a visit me thinks
Any GP who objects to a patient taking 1mg pred that keeps them stable needs to have a rethink.
Trouble is they won’t believe or think it returning PMR. I will be told arthritis. But just had MRI on knee for torn cartilage and no mention of arthritis. I have some spare Pred and was thinking a day at 5mg to see what happens 🙂
Sounds a lot like me. Hopefully we can overcome this, sometime haha… hugs💐
If it continues I will go to GP. But standard answer will be Arthritis just as the torn cartilages were. 😊. Good luck
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