How to address PMR pain while decreasing prednisone

@rachelp The trouble prednisone causes! Don’t I know! I, too, had vision changes which meant new glasses—not cheap. I have been seeing an ophthalmologist because of another vision prob so he watches out for cataracts. As for sweating problems, I had those, also. I get so warm and uncomfortable, but never actually sweat. I barely used a blanket this winter! Night sweats went away after awhile, thank heavens. I’ll be glad when I can taper off!

Hello everyone. My name is Barry and I’m 67. I was diagnosed approx 4 years ago. Same onset as everyone else; an incredible aging overnight. This vibrant athlete went to old man in milliseconds. Anyway just like everyone else 20 mg of the the prednisone and I was my old self again. Miracle!
Then the bad news. I am hooked. I got down to 2.5 mg and crashed. I always crash below 3. Now back up to 5 today. I too was told to go on methotrexate and refused. Anyone get good results ? Cured ? Or is the pill worse than the disease. Any supplements
Help ? I don’t mean placebo but really help? It’s very discouraging because you think you’re getting close to the end. Sed rate is good but doesn’t mean anything. Still have PMR with good sed rate. I haven’t heard from one person on this site that there is hope. Only failure. Can anyone give us any hope to this terrible disease. I now have my fingers deforming and swelling. They hurt too. Some days it’s my legs, some days my neck. Always my fingers. Somebody tell me I’m not going down the drain. Thanks

Hi, @barry51 I’m sorry to hear about your autoimmune disease. Sure puts a kink in getting older! I had so many plans, now I’m just looking at modifying them. I’ve told myself that this is the new me and my new reality. I have CLIPPERS disease which affected everything. I don’t have pain, but... I would suggest that you take the methotrexate as recommended by your doctors. Several people with my disease use it and they’re doing OK. I use rituximab twice a year and hope to taper off prednisone. I know that this will be a lifelong condition I have 😪 and rituxan is helping! Long-term prednisone has its own problems, so have a good discussion with your doctor about methotrexate. I wish you the best. Becky

Hi Barry
Mine started 2 years ago the same way. I was the most active woman i knew...travelling solo to India and Kenya...had my own business..building rock walls and gardens..etc etc. Then such a sudden screatching halt! The pain from head to toe, debilitating fatigue, i couldnt even bend over. 20 mg of prednisone and voila! I was back to myslf. I have been trying to reduce ever since and am now at 7mg. Today i am in pain but will take a T3 and that will clear up the day without upping the pred. I dont know that i will ever get completely off it, but i take comfort in knowing the side effects under about 9mg are negligible. I tòo have pain in my fingers and cant wear rings anymore because of the swelling. But
.....i give thanks everyday that it is not worse...and that it is not life threatening. Good luck with your reduction! I hope one day to be off it too!

Hi Barry @barry51, welcome to Connect! I can really relate to the feeling of incredible aging overnight. Except in my case I finally found the old guy. I've had 2 occurrences of PMR which is currently in remission. The first them it took me three years to taper off and the second time 1-1/2 years to get off. Don't be discouraged. You mentioned getting down to 2.5 mg before crashing. Is it just a little more pain or is it the full blown aches and pain that come back?

When I was tapering the first time I was stuck at 1/2 mg, going back and forth between 1 mg and 1/2 mg for about six months before I was finally able to stop taking prednisone and only have some minor aches. The only advice I can give to anyone who is diagnosed with PMR is don't push yourself to do stuff that you used to do. You need to rest, accept your limitations, and look after yourself. I do think cleaning up one's diet and eating healthier makes a difference but is not the total answer. Here's an article that may be helpful.

What to eat if you have polymyalgia rheumatica
-- https://www.medicalnewstoday.com/articles/321683.php

Hoping some other PMR warriors will jump in and offer some tips on how to deal with what I call Mr. Nasty. Here is another discussion you might want to join and meet others with PMR.

> Groups > Autoimmune Diseases > PMR Anyone?
-- https://connect.mayoclinic.org/discussion/pmr-anyone/

I have been down to 2.5 for several weeks. I wake up stiff and achy, but am putting up with it hoping it will get better. I do feel brighter and more hopeful after my coffee and toast. I am trying several different aids. Along with my good fresh organic diet, I am taking increased doses of turmeric and last week started on CBD oil three times a day. From what I have researched neither can hurt, even if they do not help. I keep hoping. The hardest part to endure is not to be able and active as I used to be. The most I can manage these days are short walks by the river or in a local park. 🙂

Hello Barry my name is Beryl ....well I have just read your post , and by the way welcome , it's the sort of feeling that we all get ......difficult to judge about the methotrexate my Doc said it wasn't right for me so I presume that yours has thought it over and thinks it is right for you , but ask him why it is right for you ......
We all appear to be very fit before this strikes .....I asked my doc why is this so .....he said we don't know you work it out and tell me ......ok......
As for how and when you will be without PMR we are all different Barry and no one is the same ,some get over this thing in one or two years, that is what I was told at the beginning....well I am one of the lucky ones and have had it for ten ......but you know one of the things that helps is trying to feel as normal in yourself as possible .....don't stop laughing and having a good time attitude helps ......hark at me going on ......well my thoughts with many others are with you ......good luck with your recovery.....Beryl

@grandmar. Hi I want to share some information for all fibromyalgia and Lyme disease I found I don't know how to insert the Fedupwithfatigue.com website ,click on this I guess
Fibro@Lyme are lumped together here's some things they stated go on a Autoimmune Paleo diet add to this bone broth first detox your intestines next go to a sauna , for about 10-15 minutes this sweats out the toxins .site is Everlywell.com lots of info here for pain go to Amazon for ActiPatch .Another piece of news is There's a 17 % reduction in opiods

@lioness
Thank you for the information, but I don't have Lyme disease.
I do know they are both classified as auto-immune diseases.
I know that they say that if you eat clean, it will help with inflamation.
I am trying that!
Thanks again for the info!
Have a great weekend!!!!
Ronnie (GRANDMAr)

@grandmar I didn't mean you had Lyme but some have stayed they had a diagnosis of Lyme I know going to a sauna does get rid of toxins in body which I haven't been to in awhile Going to have to start but eating the auto immune diet maybe not so restricted. Have a good weekend.:-)