PMRGCAuk

Question?

So well into my third month of PMR, down from 20mg's to 15 of prednisone...going nice and slow...my main complaints now are very sore stiff hands in the morning and a few days a week of just feeling like crap..pred side effect or PMR..who knows...no one that's who...my question is, does anyone have a GP or DR who even attempted to really dig in and try to find out what exactly caused the auto immune response in the first place...a hidden infection, something going on in the gut, etc..seems they just run a few blood tests that show elevated rates, etc, and say it PMR, start the pred...they may be correct but it doesn't seem they do much in depth digging...late onset RA or elderly on set RA as it's called has almost exactly the same symptoms and blood work up results, how long to wait before further checking at a major medical center?...things aren't going too badly actually but in the back of my mind it seems it's still just an educated guess...here's another thing I tried on a particularly crappy day..I took one of my older celebrex's that I had been prescribed for OA a few years ago..I never took them back then because of the Vioxx scare and didn't want to start on a daily med routine...I know it's not recommended to take an NSAID while on prednisone but I read "moderate" chance of gi troubles...well it worked wonderfully that day and into the next..the combination of the two made me feel almost normal...Celebrex would be more of an RA drug but it sure helped that one time..not recommended for anyone just my experience....

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Hi, 4 years into PMR, and I have just started the same medication. My orthopdist said most of my back pain was probably related to arthritis...and lo and behold...the nsaid took care of80% of my back pain. This means my arthritis has seriously contributed to the pain level, and prednisone didnt take it away.

Also, I have had no PMR consequences from recent taper, from 4 down to 3.5.. so a week more and I drop to 3 mg.. this feels pretty good, and I’m hopeful that my PMR has finally begun to extinguish. Time will tell..

Good luck, Jerri

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Hello,

I can can understand the need for definite answers but I think the reason they run a few blood tests is because essentially that’s all they’ve got. Autoimmune disease is still quite a mystery involving a mixture of genetics, life events, chronic stress, medication, environmental factors, medical history, more recently gut biome (perhaps)....the list goes on. Some can point to a specific event pre PMR/GCA but who knows if that was just the straw that broke the camel’s back and it was brewing and undetectable way before that? Some infections can hide very effectively or if they do trigger the body to attack itself, the process might be so slow in some that the horse bolted years ago. Many blood tests are quite blunt instruments to be honest and often can’t account for the variation in the human body. Even with my eyesight shutting down with GCA at its height, my ESR was 11 and CRP low. It is usually an educated guess. At least there is the response to Pred as a good guide.

Until we see money being poured into research with powerful campaigns going on like cancer, which catch people’s imaginations, I doubt we will get much soon. Some diseases have the fear factor, so cancer’s, “This bad thing will kill you” gets people dipping into their pockets more than, “You’ll wake up stiff in the morning!”, (no disrespect to PMR sufferers). Call me cynical but even if it did, I suspect it would all be geared to drugs to treat it rather than the whys and wherefores which make no money.

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The fact that steroids are so cheap is another reason that research won’t be promoted.

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True, but they do seem to be going for more expensive drugs in attempt to avoid Pred. However anything that suppresses the immune system is going to be a problem, new or not I suspect. Needs to be something super specific.

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Trouble is - you need to know WHY and HOW to be able to develop a treatment unless you find it by accident. There'd be a lot more interest if it affected more men and younger people - until relatively recently the majority of patients were women over 60 and, as a result, not part of the workforce so not a financial trigger.

And you are so right - basic research won't be done. And even less will be done in the UK in the future.

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Just a point of consideration... I pay out of pocket for the celocoxib, my insurance doesnt cover... however... it seems to be seriously efficient at relieving my spinal pain. Therefore... i move down the road, hoping to end my prednisone treatment in the early months of 2018!, .. (after 4+years).

I’ll keep u posted... 💜💜Jerri

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They HAVE checked for ankylosing spondylitis I hope? Sorry, can't remember...

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No check for a.f., but it surely looks like a possibility. I will make an apt with my rheumy in Dec. thanks for that suggestion...once again. J

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