I need help from people who are living with PMR and not a Rheumy who is narrow minded! I am 39 yrs old. I was diagnosed with PMR by a family Dr. 2 years ago. I had every symptom. My neck felt like it was broken, i felt like i had a knife stabbing me between my shoulder blades, my lower back and thighs were so stiff i found it hard to walk, i was extremely fatigued and generally not well with no appetite.My CSR was slightly elevated. I even began having temporal pain (felt like my temples were in a vice) and jaw pain. Prednisone took the majority of these symptoms away. I have been on numerous doses of Prednisone, even going off of it twice. Unfortunately, i've been on 5mg for over a year now. The good news is, i feel pretty good and function quite normally while on it.
Now, for your help! I have finally gotten in to see a Rheumy and she of course says "there is no way i have PMR, i am too young, and i have to get off the Prednisone now". I was very upset with her, because she would not listen to my syptoms, but I do want off the Prednisone, more than she wants me off it. She put me on a taper of 1 mg a week. While on 4 mg for a week, i was stiff, sore, nauseous, and had some temporal pain. I had hardly adjusted to that and I had to taper to 3 mg. WELL...I thought i was going to die! Not because of muscle pain or stiffness...but because of severe temporal tenderness and pain, I also felt like i was burning up inside and at the same time had chills ( i may have been fevered) and i felt very sick. I struggled through for 3 days but couldn't take it anymore and was very worried about the temporal pain, so i went back up to 5mg. Within 2 days, i was normal again.
I am so worried that i have knocked out my adrenal gland by being on Prednisone for 2 years and i'm looking for someone who has been on it for a long time and has tapered or is tapering off of it. Has anyone had my symptoms when tapering? I have to see the Rheumy next week and i'm going to ask her if i can taper more slowly. I'm hoping it was just too fast of a taper for the amount of time i've been on Prednisone. I am so afraid i won't be able to get off of Prednisone or i will die trying!!!!!!!! Sorry for the long post, i'm feeling desperate and very discouraged.
Your tapering of 1 mg a week seems much too fast. When you are at 5 mg, if you manage to taper to 4, you should stay there at least a month. Even 1 mg per month may be too much, it seems to me.
I think you should look at the archives of this forum and see what different persons have said about lower ages and pmr and then copy and show your doctor! There seem to be a number of persons around 40!
Good luck
Ragnar
I went to the Rheumy this week and she told me I was young to have PMR, I'm 57. I've been on Pred for 2 yrs now and currently at 5mg. I feel better since I stopped eating carbs and sugar. I told the dr I don't even care if it's just in my head that I feel better since I changed my diet. They weren't concerned about my changed eating habits but told me the PMR can last up to 18 - 24 months or you can have it for life.Now, remember I got on steriods in late oct and got off early january. I also got off my fosamx then too. I dont know if this will last or if it is just a natural progression or if i did something. Yesterday I bought a neck massager and used it on my back and knees and shoulders. I posted a link here a while back that said that pmr could be just caused by bone spurs....I had an mri of the neck and did indeed have bone spurs. I figured they went on down my back. Couldnt get a doctor to pay attention to that fact - saw three. Dont know if the vibrataing massage action helped or not. I also started drinking mangosteen juice yesterday. I read someone's post here that said it helped them. ANd then I read something on the internet that said that mangosteen would help pmr. I also take a lot of supplements.
I actually coughed and yawned without the usual pain. I just hope this lasts and gets better. I still have trouble getting up and down but it is so tolerable.
I just was too scared of the steroids for many of the reasons I read about and also in relation to PMR. It seems like you have more trouble with the pred than the PMR. I wondered if it was the PMR that lasted so long or the pred that was making everyone so miserable. I wanted to see what the natural progression of PMR was so I could try to treat myself. I tried to treat the inflammation of the pmr with supplements and care. I also read that the pred could hide underlying conditions - didnt like that. I guess I could wake up tomorrow and be miserable again but until that happens....I am going to hope for the best.
A new day and I still can get up and down with tolerable discomfort. I walked around my yard and even chased a cat out of my flowerbed. I wonder if this big improvement is from the mangosteen juice? Here is a link from the Mayo Clinic.
http://www.mayoclinic.com/health/mangosteen/AN01197
Has anyone else tried this? My knees are so much better. I still shuffle around and I am not going jogging anytime soon but at this level I sure dont need the NSAID. And that has been one of my goals - no meds. At any rate - it is expensive but I am going to continue to drink it for awhile.
Smartie, I wonder if any other, more easily obtainable fruit or food contains xanthones. Keep on with the mangosteen, you need to give it a good long trial!