Hi Mamie, Getting out of bed and getting dressed every morning was a big task for me too. This PMR limits us but I am glad that you can put away the Christmas things. Sorry to hear about the weight gain and the moon face. I had to restrict my carb intake and walk every other day. I belong to Kaiser Medical Foundation and my rheumatologist tapered me off the Prednisone more slowly than you are tapering off. I tapered 1 mg at a time. However my sed rate did not drop as quickly as yours. But I started with 10 mg; I never had to take the 20 mg dose. Maybe this approach makes a difference. Good luck with the next testing.
I was diagnosed with Polymyalgia Rheumatica in July 2012. I started off on 10 mg of Prednisone in the a.m. and 10 mg in the p.m. I've been trying to ween off of the Prednisone slowly. I hate the side effects. I've gained 10 pounds since July, which is not too bad - but my neck and head are so puffy, I feel like I have a basketball for a head.
I got down to 5 mg per day for 2 weeks, then Thursday, I couldn't raise my right arm again.
I'm hoping there is some "healthy" treatment for this. I've never been much into vitamins and going to the health food store, but am going to start researching it. Have an appt with another Rheumatologist in April since I've moved from Central Texas. Loved my doctor at Scott and White in Temple. First time I saw him, he knew what was wrong.
Trying not to be a whiner, but I've always been very healthy. This PMR just came on over night. One day I was fine, the next I could barely walk and couldn't raise my arms. Would wake up screaming from the pain.
Guess I should be content with the Prednisone treatment since I feel OK. But now I have high blood pressure. If anyone has healthier treatments, please let me know.
Thanks!
I was diagnosed with PMR on January 12th, 2013 and promptly placed on pednisone which immediately relieved the pain. However, I have had a problem with erratic blood pressure(high, higher, dropping rapidly) and horrible sweats which one would almost think were a menopausal type thing but I am 65 years old and long over menopause. I meet with my rheumotologist in a few days but have had a difficult time with this prednisone. I have also had the flu,an upper respertory infection and severe bruising for a month while on this prednisone and I am so very discouraged pain.as the side effects are horrible but I have no.
I am sorry to hear you are having such a bad reaction. Prednisone weakens the immune system and I got infections before I learned to wash my hands after being in a public place and to stay away from sick people. I went on a cruise and eye, sinus, ear and vaginal infections. I started on 10 mg and am now on 2 mg. What dose are you taking? Please let us know what you rheumotologist says.
The prednisone has caused me to have bronchititis, vaginal infections, urine infection, etc. I feel like I have an illness 24/7. My poor husband. Right now I'm battling a vaginal infection alone with crouping and an upper respiratory problem. Is this common for being on prednisone? I just feel so run down I can't function. My fat face is making me feel terrible and I don't want to leave the house. I've put on 20 pounds since Christmas and my clothes don't fit. I've also noticed I'm up more during the night running to the bathroom and this is hard cause I have sleep apnea and have to wear the CPAP to bed. I'm going around in circles not knowing what to take care of first. Its really frustrating but it could be a lot worse. My internest wants me to go to a rheumatologist but what more can he do than my own doctor? Anybody seeing one and what more can be done besides those darn steroids? Also, does anybody know what causes this disease. Someone told me a tooth infection can do it and sure enough before I came down with it, I had a bad tooth infection and have had root canals and crown lengthening done. Wonder if its connected. Thanks for listerning - I get so depressed especially when you're retired and want to travel and have to put up with all the aches and pains.
Five years severe pain....all muscles from feet up...50k in neg testing with a "severe fibro" diagnosis I persevered as omehow it did not fit. Extreme exer use intolerance causes atrophy to my muscles and very weak. I have always been very active and this all started with an exer use injury to my feet and calves from over exercise at age 54 6 days ago was diagnosed with PMR by a neurologist. He started me with 30mg Pred a day. Creatinine levels show lots of inflammation in my body. I have been taking two kinds of pain meds alternating to help a oid overuse. Since started Pred have cut pain meds in half. however I am still hurting and my dose seems higher than most....plus it has been five years and some posts here say usually goes away on its own after two or o. my questionwould led be...
I've had PMR since May 2011, I have spent the last year tapering off prednisalone and now the PMR has come back. Back on preds again they work as far as the pain and stiffness goes but I end up at some time everyday with a foggy brain, can't think straight and only alternative is to lie down.
Did you completely taper off prednisone when PMR came back?
I had completeley tapered off preds for 3 weeks, had a synacthen test to see if my adrenal glands were back to normal which they were along with everything else normal. But PMR came back in a big way, sore arms stiff legs no energy at all sick foggy brain etc.
I am so glad I found these posts. I was diagnosed with PMR five months ago. Never heard of it before, don't know a soul with this ailment. I think my husband thinks I am FAKING the fact that I feel soooo bad, etc. I finally went to specialist, am on PREDNISONE, it helps a lot. I am trying to wean myself off the PREDNISONE following doctors directions, but can not do it as fast as I hoped, so so depressing. Nobody around me understands my condition, I am glad I read that I am not the only one.
Hello there. So sorry to read of experiences of people who've had this disease for some time, and after finding relief, they got worse again. I had good health and am 56 yrs old female. Suddenly came 8 weeks of increasing, excruciating pain in muscles - many days I cannot dress myself or hold a spoon in the mornings and cried daily. Saw 2 doctors / 5 surgery visits. Tempted to take ALL pills i''d been prescribed at once one night, as I too was suicidal because no anti-inflammatories or pain relief (even those that stop brain receptors knowing there is pain) did a thing. Discovered it's because the disease needs steroids.
3rd doc - 6th surgery visit - diagnosed Polymyalgis Rheumatica 4 days ago. Given prednisone - worked 2 days, then agony again. Am taking co-codomol at bedtime, so am getting good number of hours sleep before pain starts. Last night took drink and apple to bed coz don't think can take pills on empty stomach. 4.30am took 2 paracetamol + 2 prednisone - then again 7.30am. Stiff today but not crying out loud. In the midst of the nightmare, I am releived that there is somewhat less pain as the day goes on.
I also have Zopiclone 3.75mg due to lack of sleep through menopause. I take a dose about once every two and a half to three weeks - because I am quite terrified of them - I've known people addicted to sleeping tablets - also, they lose the power on our bodies if we take them regularly - so I'd rather be sure to have a really good nights sleep every couple of weeks at least - that keeps me sane. I guess in my pain, I can count my blessings - a cousin has rheumatoid arthritis since her 40's - and that is degenerative - whereas, I believe this can eventually go away - so there is hope for the future while we persevere through this pain, and the changes to our own lives and our families.
I'm 62 years old and have enjoyed relatively good health for most of my life. Last winter I was fairly sedentary and then in February started to do some strenuous outdoor activities. I woke one morning with very stiff muscles from shoulders to hips. I had trouble dressing myself. I thought it was from the outdoor work I was doing, but it didn't go away as sore muscles had previously. After about three weeks I went to my doctor. I thought I might have Lyme disease, she thought I had rheumatoid arthritis. She ordered tests for both and more, unfortunately she did not order sed rate or CRP tests. When the tests came back all were negative except for one showing anemia. My doctor told me I was just getting old and since it was nine years since my last colonoscopy, I should have another one. As I have no health insurance, I went to the drugstore and just got a $10 test for blood in the stool. This also was negative. Weeks went by and my doctor had no further advice as my condition worsened. I finally e-mailed another doctor acquaintance describing my symptoms and she immediately diagnosed it as PMR. I called my doctor and told her what the diagnosis was, told her to prescribe 20 milligrams of prednisone. She then told me- "oh I have other patients with PMR." Her failure to correctly diagnose me at first cost me an extra month of deterioration and pain-and-suffering. Anyway, I took 20 milligrams a day for three weeks, then went to 10 milligrams. Within six hours of taking the prednisone, I could feel an improvement. Within a few days I felt back to normal. After much online research, and reading about side effects of prednisone, I tried to cut my dosage back too much too soon. It set me back some, which is where I am now. I'm taking five milligrams in the morning and five milligrams in the evening. I feel stiffness and fatigue but not as extreme as it was before prednisone. Mainstream medicine only has two theories as to what causes PMR-viral or genetic. However, alternative medicine for the most part pins it on inflammatory foods. I have been trying to find some agreement on exactly what are inflammatory versus anti-inflammatory foods. There is agreement that wheat is inflammatory, some claim all grains are inflammatory, even whole grains. For now I am avoiding all grains. There also seems to be agreement that dairy is inflammatory, so I'm avoiding all dairy except yogurt. There seems to be agreement that alcohol is inflammatory, so I'm avoiding that. Sugars and all simple carbs are supposed to be inflammatory so I'm trying to avoid that. Basically, the recommended anti-inflammatory diet is lots of fresh organic fruits and vegetables, with a little protein. Before April, I had never heard of polymyalgia rheumatica, now it dominates my life. I've been doing a lot of researching and have more to say on this subject, but I will end for now.
I also want to relate my experience in searching for some relief from PMR. Online searching brought me to- autoimmunediseasesolution.com/ that site is owned by Peter Alexis. He claims he has found the dietary cure for inflammatory diseases and sells a $37 e-book. He also claims a moneyback guarantee if not satisfied in any way. In my desperation, I bought the e-book, after doing some online research into Peter Alexis he seemed legitimate. I found the e-book to be one of the several different recommended anti-inflammatory diets, as well as some other advice like stress reduction meditation etc., I was unsatisfied with it and asked for my refund. I never got a reply. I asked several times directly through e-mail, and through his website-still no reply. Fortunately, I paid through PayPal, and lodged a dispute with them. They also tried to get Peter Alexis to respond and he did not. PayPal refunded my $37 and said they would look into his business. In one follow-up e-mail Peter Alexis sent me after buying the e-book, he listed a street address. It does not exist, not even the city. He is obviously a fraud. I also lodged a complaint with the Better Business Bureau. They also had no luck in getting him to reply. Lesson learned here is don't waste your money buying advice, there's plenty of good free advice online.
Beatrice, That's for the info. I too am taking the predisone and have myself down to 2.5mg a day with slight aches. My question is.....with our immune system so low are we more susceptible to cancer or other illness's be cause of this? Have you heard the long term effects? My specialist I saw in the beginning asked me about cancer in my family. When I told him I had none he said my chances were better! Then he wouldn't explain why he asked. Have you heard anything like this?
Not sure if anyone looks in on this thread. You may be interested in the study done by the University of Bristol. Following their regime, seems its less likely to have a relapse.
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