My rheumatologist at the University said last week that the vast majority of his patients have PMR for about 9 months. I have had it 33 months. All the posts I am reading seem to indicate that it generally lasts longer than 9 months. Can anyone tell me what their rheumatologist say to expect for time until it burns itself out? And, has diet or anything other than steroids helped expedite the timeframe?
My Rhumy told me 3-6 years, up to a lifetime. I'm starting year 5. I have about two flares a year. I am stable at 5 mg of Prednizone but need to now take it up to 20 mg instead of 10 or 15mg like before to get relief now.
As far as I am aware all current medical guidelines give a minimum of 2 years, but only 25% of patients achieve this. The average at the moment seems to be around 5-6 years.
I don't know where your Rheumy gets his numbers from, and I'd hate to be one of his patients. Can't even imagine what he would do with me being 16 years in!
There are no rules about diet, but given that most patients put on weight as a side effect then a low-carb diet probably helps. Otherwise something like a Mediterranean diet would be the way to go.
I'm so sorry you've had to up your dose. It's tough. But at least we have this forum where we find support and can help one another. I hope things get better quickly for you.
My rheumatoligist told me 2 - 4 years. I had it almost three years. Nothing but prednisone worked for me. I went three years after it burned out with no symptoms and no prednisone. Five months ago I have it again.
Thanks. I have no idea where he gets his numbers. He is an assistant professor at the University. At least he listens and doesn't give me a lot of push back. Although I don't want anyone to have PMR 16 years, it does give me hope for a future. I lost my dad to sepsis after two years on pred for PMR. I've had sepsis too so I was scared. Your story gives me hope and I appreciate your sharing. Thanks.
Wow. I'm so sorry that it's back. At least we know it went into remission once and can do so again. I hope you go into remission quickly. Thanks for the quick response.
Hi I was diagnosed last August with PMR so nine months now, I am down to 7mg prendisone a day and feeling very little pain now , I did change my diet not eating as much sugar or dairy which what I have read feeds Inflamation. There are many people on this who have had PMR for 2-3 years I am still hoping I am one of the lucky ones hope to be off the prendisone by August so far no flair ups on my tapering . Hope all the best for you Jeannae
Thanks, Donna. I hope you are lucky too and that by August you will be pain free and steroid free.
I did change my diet for 30 days to see if it would help my PMR I ate no dairy no sugar no grains no alcohol and I did see an improvement and lost 12 pounds feel good. am now down to 7mg pred. and very little pain. Will take that for now as I know may have flair ups at any time.
Do love this forum what a great place to share this journey .
I can only say - what a load of tosh! My husband says it is probably because he signs them off after 9 months and sends them away - never to see them again!
No medical literature I have ever read suggests significantly shorter than a couple of years to get off pred. One paper (from a top Italian group in the PMR field) following patients on/not on methotrexate found that 30% of patients still required pred after 6 years, whether on mtx or not. One paper I have read, but I can't find the reference again, said that about 25% are a couple of years or leass but are at a higher risk of a relapse later, about half take up to 4 to 6 years and the rest of us are on pred longer. Nefret is 16 years, I have had PMR for 13 years and counting and there are others on about the same sort of time scale.
There are a few posts in various places claiming diet worked a miracle - no-one has found a reliable dietary cure for an autoimmune disorder! For some people omitting things may help in some way - sugar and simple carbs are pro-inflammatory for example - but it is unlikely to stop the autoimmune disorder. My granddaughter has severe brittle asthma - which is much better since she went vegan. But it isn't gone altogether. Low carb with pred seems to help with the weight gain for many of us. But you have to be consistent and some people find it very hard.
You may be lucky, but be aware that the reason you feel little or no pain now is because you are on pred which is working effectively for you. I usually feel pretty good whenever I'm stable on a lower dose, although the lower I get the harder each taper becomes. I got to 7 mg from 15 in about six or seven months. But about sixteen months later I'm still on pred, 2 mg now, with a rather tentative effort underway to go to 1.5. Also reckoning in the undiagnosed fourteen months nearly two years treated well into third year. I no longer calculate when I'll be at zero pred, but instead just keep chipping away to get get lower, no matter how long each step takes. Funniiy the other day I felt so extremely well I fleetingly wondered whether PMR had left me. But three days later I know it hasn't.
Hi Jean, I wonder how many PMR patients your rheumatologist actually has. I bet not many. My GP gives the impression she sees dozens of people with PMR, I think she has actually only seen one as she is fairly recently qualified. My initial rheumatologist said three and a half to four years. Mind you he was private so it may have been in his interest!
Just remember Prednizone is all we can do. Nothing takes PMR away. We are only treating the pain. If Prednizone works then take it! I'm very active, and am just coming off a flare sitting at 18mg. Im in year 5. I also just got diagnosed with osteopenia in the hip and osteoporosis in my spine. So take your calcium and Vit D. I'm sure mine is a combination of being post-menopausal and taking Prednizone
As time goes by, I tend to think of pred as far more than a pain reliever, and consider pred to get pretty far back towards the root cause of the illness.
I think that this is the reason that flares from taking insufficient pred tend to be so volatile and self-energizing, because the mechanism of symptom expression fuels the cause nearly at it's source, such that over-use of affected tissues actually brings on flu-like symptoms and burning sensations, not just soreness.
I took an advil capsule yesterday following my periodic hours-long, vigorous yard-work episode, and similarly it seems to have completely blocked the reaction that I expected to be feeling this morning. I feel better than usual even.
So much more than a pain-killer, more of an inflammation interruptor at some level, much like pred. I must also mention that I've been taking an increased dose of 3mg pred per day over the last few days so can't really say which med is doing how much for my symptoms, but they appear to be working synergistically.:-)
Pred seems to be the one thing that helps PMR. NSAIDs really have little impact and should not really be taken with pred anyway as they are contra indicative with steroids.
I did find the Advil to be all but useless early on, before pmr diagnosis.
But this was recommended in a different thread here for the case where one is doing some very strenuous activity, so I gave it a try as I said I would, and so far so good.
My worst problems of late have been in my shoulders, slightly different on each side, but I even did three sets of 11 pull-ups yesterday, before the 2-1/2 hours of lawn-mowing in steep, rough terrain, and today no soreness to speak of. I'm amazed, and will repeat this experiment with Advil again.
I don't worry much about the two meds causing stomach problems these days at my very low dose, and the only reason I've heard of for avoiding this combination.
Thanks, Pam. I'm taking cal, mag, zinc because my calcium low and now showing degenerative changes in spine. Taking 50,000 iu's of vitamin D once a week for two months then hopefully once a month. I'm in year three.
Great thought. I will ask him. He is a new rheumatologist at the University
Hospital. Maybe he only has a couple of patients. Hope not but time I ask!