Polymyalgia Rheumatica (PMR): Meet others & Share Your Story

Hi Karen @karenhope, Welcome to Connect. Sorry to hear the Methotrexate had the bad side effects on your liver. My PMR is currently in remission but for both occurrences my rheumatologist started me on 20 mg prednisone. Took me 3 and half years to taper off the first time and I had a problem with weight gain. I was in remission for six years and it came back. My second time around only lasted 1 and half years before I was able to taper off. One of the biggest reasons I think it was easier the second time around was I changed my diet and lifestyle which sounds like you are already on your way with that.

@tsc, @alanbruce and others may have some information or suggestions to share with you.

Has your doctor or rheumatologist suggested any other treatment?

Hi @annettetompkins Is your doctor trying to taper you down from 10 mg to .5mg? That sounds kind of extreme.
I was at 40 mg of prednisone initiallty for Giant Cell Arteritis. I tapered down 5 mg every two weeks until I got to 10 mg, then tapered down 2.5 mg for two months until I got to 5 mg. Now it's taper down by 1 mg every month as tolerated. So far. so good on 4 mg. Good luck!

Hi Judy, PMR is a relatively rare autoimmune disease that effects 52.5 in 100,000 people. About 30% develop Giant Cell Arteritis, which I also have. These diseases mostly occur in people 50 and older and the likelihood increases with age. Women get PMR at twice the rate men do, and there are genetic markers. The highest incidences of PMR and GCA are in Scandanavian countries. Carpal tunnel syndrome can also occur in patients with PMR (This info from Cecil and Goldman's Textbook of Medicine, Chapter on GCA and PMR). My background is mostly Soutern European, and for a disease that is relativey rare, my aunt and mother-in-law both had it.
I found saffron capsules - 88 mg - at Swanson Vitamins on line. On a scale of 1-10, the pain and stiffness of my PMR was a 10, something I will never forget. It got better after nine or ten months, but then, I got other weird symptoms, which were Giant Cell Arteritis. When I had PMR I still managed a daily walk and I couldn't understand how I could walk for so long and still feel so stiff, especially the backs of my knees. A doctor friend pointed out that I couldn't get blood flow to the area because the PMR was attacking my veins!
I think we are so lucky to have prednisone and other drugs to manage these diseases, despite their drawbacks.
Wishing you the best, Teri

What tests did they use to diagnose your Arteritis? How long were you on 40mg of prednisone, I thought you had to stay at that level for a month? I am having symptoms of PMR and arteritis, but my blood work is normal and 2 years ago I had negative artery biopsy's on both sides. But since then, my left sided headaches have continued off and on. I've read the biopsys and blook work are sometimes normal even if you have it.

What a journey! I was diagnosed after a ice fall, simply did not get better so PMR identified, 3 years later manage pain with meds exhaustion never really goes away, Have worked up until November last year retired from a Director of Health position, stress was simply not good for me! I live remote no major hospitals or specialists within 6 hrs. Eventually diagnosed with GCA also. Inadvertently left on 35 mg daily prednisone for 6 mths, gained 55 pounds lost most of my hair. developed diabetes and hypertension, once specialist identified overdose tried biologicals to give me coverage while decreasing prednisone, unfortunately diverticulitis flared up so biological ceased, placed on ARAVA to cover while still reducing prednisone and developed peripheral neuropathy once confirmed on EMG Arava stopped. Finally Jan 12th prednisone stopped 12 mth of reducing. flare 4 days after every dose reduction but made it to zero! unfortunately only lasted 2 weeks and now in a major flare up all joints feel swollen and stiff very little sleep for three nights, cried out to husband to roll me over as i was stuck in a right side position and could not move to roll over due to strong pain. CRP elevated, process with Rheumatologist is to call when bloods taken results checked and secretary rings back with instructions, so secretary called me stated Dr wants you to increase prednisone by 1 mg i said i am not on prednisone? Secretary proceeded to discuss options for dosage? Dr is unavailable for another week i decided OK i will take 1 mg till i can talk with her, have taken 2 doses now and no recover yet? Does anyone else have this sort of lack of access to care? I am going to talk with DR when available and ask for a plan that does not require me to call her for dosage changes, subtle changes like increase 1 feel better titrate down etc. So very hard when it is at least 7-10 days wait when every joint is painful. On a happy note i lost all the weight, diabetes and hypertension gone and hair grew back curly not bad considering it used to be straight and i always wanted curly hair LOL, What i have learnt over the last 3 yrs is enjoy the great days buy a scooter like i have and use it to walk to the park with the grandbabies don't let pride cause you to stay at home and miss the important things!

What a journey! I was diagnosed after a ice fall, simply did not get better so PMR identified, 3 years later manage pain with meds exhaustion never really goes away, Have worked up until November last year retired from a Director of Health position, stress was simply not good for me! I live remote no major hospitals or specialists within 6 hrs. Eventually diagnosed with GCA also. Inadvertently left on 35 mg daily prednisone for 6 mths, gained 55 pounds lost most of my hair. developed diabetes and hypertension, once specialist identified overdose tried biologicals to give me coverage while decreasing prednisone, unfortunately diverticulitis flared up so biological ceased, placed on ARAVA to cover while still reducing prednisone and developed peripheral neuropathy once confirmed on EMG Arava stopped. Finally Jan 12th prednisone stopped 12 mth of reducing. flare 4 days after every dose reduction but made it to zero! unfortunately only lasted 2 weeks and now in a major flare up all joints feel swollen and stiff very little sleep for three nights, cried out to husband to roll me over as i was stuck in a right side position and could not move to roll over due to strong pain. CRP elevated, process with Rheumatologist is to call when bloods taken results checked and secretary rings back with instructions, so secretary called me stated Dr wants you to increase prednisone by 1 mg i said i am not on prednisone? Secretary proceeded to discuss options for dosage? Dr is unavailable for another week i decided OK i will take 1 mg till i can talk with her, have taken 2 doses now and no recover yet? Does anyone else have this sort of lack of access to care? I am going to talk with DR when available and ask for a plan that does not require me to call her for dosage changes, subtle changes like increase 1 feel better titrate down etc. So very hard when it is at least 7-10 days wait when every joint is painful. On a happy note i lost all the weight, diabetes and hypertension gone and hair grew back curly not bad considering it used to be straight and i always wanted curly hair LOL, What i have learnt over the last 3 yrs is enjoy the great days buy a scooter like i have and use it to walk to the park with the grandbabies don't let pride cause you to stay at home and miss the important things!