Lol. That's what I think based on everything I have read everywhere. It takes a bunch longer than 9 months. However, if he diagnoses them incorrectly maybe it is nine month average because they never had PMR to begin with. I do know two older women who each were diagnosed with PMR in two different states here in US and both have gotten off within a year. So I went by that holding out hope until I started to search the net. Now I think under a year is the exception and that most of us have this for many years if not forever. I wonder if there is a variable on the strength. It certainly seems like patients in the EU are on higher doses than here but I don't have a representative sample so it just may be the people who have turned to this site. I, too, think limiting the carbs and certainly the refined sugars will help squelch a bit of the inflammation but I don't think it, in and of itself, will put PMR into remission.
Yep. I sure like it.
I would have to argue with you. I don't think a diet would have any influence on the length of time the disease lasts. We all take prednisone but it does nothing more then treat the symptoms. It also will not shorten the duration of the disease.
There is evidence that neutrophils are implicated in some way in GCA at least - a study showed their prescence in GCA and other large vessels vasculitides even after 6 months of high dose (above 20mg) pred. It is known that neutrophils are involved in some way in how pred exerts its antiinflammatory effect but I don't think they know how. It occurred to me a few years ago when this stuff was published that there must be a link somewhere.
I didn't think that was what Nefret said - she suggested the low carb to help avoid weight gain/lose weight, which it indubitably does for a lot of people. The Medditerranean diet includes a lot of antiinflammatory foods - a low carb Mediterranean diet has been shown to help a lot of a/i conditions. No, it doesn't cure them but every little helps.
There is some thought that there are at least 3 different versions of PMR - a short-lived sort (25%), a medium term 4-6 years version(50%) and a life-long or at least very refractory version. That certainly matches with what I see on the three forums - and there is no way of knowing which you are going to be at the outset.
And no - I know a lot of US members who are on similar doses. People who are early in the journey are on higher doses usually and there are fewer who have had it a long time I think - lots of people disappear once they have the hang of reducing and know their own bodies.
Dan, I'll be very interested to hear how your Advil experiment goes in the future. After a 10 months of PMR I'm only down to 15 mg of pred (hopefully dropping to 12.5 next week) but I've gotten nailed hard by pain a few times recently after a day of heavy physical labor at my job. Always shows up about 2:00 am and lasts until my next pred dose. If combining pred with advil helps prevent I'd sure try it.
PMR seems to be hard to predict how it reacts to different circumstances. I just got over a cold that hung on for 3 weeks. 11 of those 21 nights were hellish for pain. Now the cold is gone and yesterday I worked outside on my yard raking, shoveling, on the rider mower for 4 hours and other work. I figured I'd flare up last night for sure. Instead all was well for the first time in many nights! Go figure. With all these recent episodes my hands and toes have gotten swollen and painful. I hope that isn't permanent. The hands have been tender all thru my pmr "life" but the swollen toes are a new issue that really concerns me. I see my rheumy specialist in 5 days - that'll be my 1st question for him.
Thanks. Good information.
it's too bad that once people get the hang of reducing that more don't hang around to do what they can to help others. Thank goodness you are still here. This is such a tough journey to do without support. I can't find a support group where I live. Bummer. Oh well, this is more immediately accessible anyway and on bad days can do it from bed. Is anyone doing research on the causes?
Are they confident this is PMR? And not an inflammatory arthritis?
Not specifically for PMR but for autoimmune disease in general there are plenty working in the field. I think there are people looking closely at causes of CA - and they are pretty closely related it is thought.
First let me tell you how happy I am to read all the texts about PMR. It's good to know I am not the only one struggling with this health issue. My problem started out of the blue three months ago. After seeing my Family doc she immediately put me on 20 mg Pred and sent me for blood tests, worryingly I might have Aterial artitus. She convinced me I needed the Pred as I could go blind if that was what I had. Three days later I heard I didn't have this awful thing and to stop taking the Pred. As this pill had totally taken away all my very painful arms, and legs I didn't want to stop taking it. One week later (first app.) I asked doc what did I have. She thought PMR but recommended I see a Rheumy who could do far more blood tests and would be able to guide me. Yes, PMR was the prognosis. My Rheumy believes I'll always be on Prednisone, and said I could start tapering off 1 mg a month until I felt a flare up and then stay on just a bit higher than that! I was able to taper faster based on lots of reports of other folks on the web. For the past four weeks I've been on 5 mg managing OK but wavering a bit with slightly sore legs and arms and buttocks! This became very painful and yesterday I took 7mg, rather reluctantly but it has eased the pains, so it looks as if I'll stay on this for a while. My problem about being on Pred is that it will thin my bones and lower my immune system. Yes, I am taking Calcium with Vit D, along with other vita that are supposed to improve your immune system. Sorry for this long ramble, but Jeannie I just wanted to say in my case I believe I'll be on Pred for life!
Thanks for encouraging me to write my story, I've certainly enjoyed reading all the reports here and eagerly read any new info on this miserable illness.
" My problem about being on Pred is that it will thin my bones and lower my immune system"
I have been on pred for 8 years, a lot of the time at above 10mg. I rarely have colds and have never had anything else infectious and my bone density has not changed significantly - I only take calcium and vit D supplements. Neither necessarily happen - lots of people on the 3 forums have had the same experience.
There is no virtue in taking too low a dose - you have to get the benefits of the pred to outweigh the downsides. If you are really well at 7mg stay there for now - it is a low dose, about the same amount as the natural corticosteroid your body makes and which is essential for life
To be at 7mg after just a few months is very good - and if your rheumy has a crystal ball he might make a fortune! There is no way he can say at this stage how long you will need pred - but other than that he sounds to be a good one and hang on to him: slow tapering and not tapering too far! They are rare birds!
I must admit I was in Florida when all this flailed up! I'm fortunate to have medical coverage when there. My Family and Rheumy docs were both female. Funnily enough all four docs in the Arthritis Centre are female. Yes, I was very pleased with her consultation but she did want me to think about "infusion" something for my bones, which I gracefully declined.
BTW in my case Pred thinned my blood when on 20mg. When I went for my blood test I bled profusely to the point that the nurse thought I was on Warfarin! Also I had slight nose bleed, and after a small paper cut bled for ages. After more web research found out that could happen. I'm now back in the U.K. And seeing my Family doctor at the end of this month. I've brought back all my reports and hopefully I'll be able to get a prescription for Prednisone!
Thanks for taking the time to reply to my first rambling note. Good luck with your problem. I'm so pleased to have this forum to share thoughts as it can be quite worrying and I'm sure unless you have experienced the pain it must be difficult to understand.
Freda,
Thanks for sharing. It's so wonderful to have a community to share with.
We're all in this together.
What do you know about the genetic link?
"I'm sure unless you have experienced the pain it must be difficult to understand"
That is the only slack I'm prepared to cut rheumatologists! But as doctors in the field they should have learned by now that is is often just RA without joint damage. And a far narrower spectrum of medication!
There isn't really one - there are no genes that are specifically linked to PMR/GCA. The genetic link is more that they believe people with a Scandinavian heritage are more likely to develop it.
I've thought hard about this question. The problem is that I first got this in my 78th year. My Mother died in her 77th year. She had sore knees but never had real treatment for this problem..the literature r it is genetic but I've not been able to find a link of this in my immediate family. A fist cousin to my mother had severe rheumatism and I believe she was in a wheel chair. Her grandmother and my great grandmother lived to a ripe old age but of course
I don't know how she was! Have you ever heard of a correlation with eczema
and PMR? I did have a small case of this on my legs last year, which after the Prednisone disappeared. My Rheumy said of course you have always suffered from this since childhood, but that was certainly not the case, this was my first case of the thing. Actually, I had visited a dermatologist who prescribed 5 percent hydrocortisone and when I started to get very tight legs at the back I believed I was having an allergic reaction to the medicine. I stopped it immediately and waited for this tightness to go, but it just got worse and started in upper Arms, I couldn't brush my hair etc. and the rest is history. Be happy to read of any connection you may have! Thanks
Jeannae, I'm inclined to think there is some sort of familial link but whether it's genetic or something connected with shared early life experiences or environmental exposures, I don't know. I have a family of cousins whom I lived with for several years when we were small children. I'm the oldest and have sarcoidosis and PMR, the cousin closest in age to me has rheumatoid arthritis, another cousin has osteoarthritis, the third one I was told first has fibromyalgia, but later someone said it's polymyalgia (she's never told me anything) and the youngest has schizophrenia, also considered part of the whole auto immune inflammatory spectrum. There is also an adopted son in that family, and as far as I know he has none of these or related disorders.
It has been found that schizophrenia isn't a typical autoimmune disorder:
Last year, "Is schizophrenia a disorder of the immune system?" in SCience Daily reported
"The international team led by Dr Jennie Pouget from the University of Toronto and Dr Jo Knight from Lancaster University have found strong evidence that schizophrenia is different.
They tested the idea that genetic variants influencing immune function contribute to the disease but they found that the pattern in schizophrenia is not the same as in classic autoimmune disorders.
Among 108 regions of the genome previously linked to the schizophrenia, they found only six which act on both the immune system and the brain.
Jennie Pouget said: "This doesn't mean that the immune system isn't involved at all but it could be involved in a completely different way."