What else can I do?

[Poodleshrimp]

First, I want to thank you all for positive comments, and good information. I believe I am getting better, as far as pain. It has been a year since I was diagnosed with PMR. I started with 30mg of prednisone, now down to 10mg. The rheumatology clinic, of Veterans is double sided sword. After, not being able to taper lower than 10mgs, they wanted me to start methotrexate, in conjunction with the prednisone. I did for two weeks, and I was so fatigued, and sick on the stomach. I discontinued it. They want me off the steroid. I really don't know what to do. I go to accupuncure, once a week, my guy Andres)' accupuncureist, is so positive, he has tried everything. Cupping, heat, needles, herbs, etc. Last week, he tried a homeopathic injection, and I am excited to say, I feel a slight difference! I turned 69 in Oct. I hope this helps someone.❤

[HeronNS]

Once you get to 10 mg the taper really has to slow down. How are you tapering? And you can't come off pred according to anyone's schedule. We have to wait for PMR to go into natural remission. Pred deals with symptoms, it isn't a cure.

One of our problems can be doctors who don't understand we need to use pred differently from the way it's used for many other conditions. Sounds like you've been doing very well. Hopefully you can find a way to convince the docs to let you taper at your own speed. "It isn't slow if it works."

If there are pred side effects worrying you there are ways to manage most of them.

[SheffieldJane]

Hello Poodleshrimp, what a lovely photo. Welcome to the site if you haven’t posted before. Believe me, many of us face pressure to come off Steroids before we are ready, wherever we get our medical care from. Has anyone mentioned Actemra to you? This is a drug that has been proven to help with our conditions in conjunction with Prednisone. It helped me to reduce my steroid dose much more quickly. My PMR has lasted for 5 years, 4 years in, I was diagnosed with Giant Cell Arteritis/ Large Vessel Vasculitis. A significant percentage of us do go on to develop GCA. It would be very unusual to recover in a year. I hope that alternative medicine helps your journey significantly.

[Bcol]

Morning Poodleshrimp, you've done well to get to 10mg in twelve months but from here onwards you need to take the next reductions even more slowly if you want to minimise the probability of having a flare. Somehow you need to convince your doctors that pushing too quickly will probably mean you end up taking more Pred in the long run. There is information in FAQ's which might help convince them.

[DorsetLady PMRGCAuk volunteer]

Unfortunately as others have said, it’s okay for medical people to say they want you off steroids, but really they are the only meds for PMR…..and as PMR does it’s own thing! Comes when it wants, stays around as long as it wants, and goes into remission when IT wants..,not when others think it should.

Are your thumbs better?

[Poodleshrimp in reply to DorsetLady]

I have not answer anyone, because, my journey has been long. My thumbs are still numb, and sometimes, radiates down to my wrists. I worked part time, but it was sedentary, which didn't help, for stiffness. Soooo..... fast forward, I moved to AZ, hoping the inferno temperatures, would help. That remains to be seen! The stress of moving, and family business, has been a challenge, but GOD! Oh, accupuncure does really help, I would advise anyone to try it. My guy was magic, he also turned me on to some natural herbs, to keep me going. So if anyone explores accu, ask about herbs for fatigue, and a homeopathic injection for pain. I have so much to tell y'all.

[DorsetLady PMRGCAuk volunteer in reply to Poodleshrimp]

Glad to hear acupuncture is helping….

[Hidden]

Good morning, reading all your journeys with PMR has helped me to get my head around the beginning of mine. All your suggestions regarding diet and prednisone are a goal. Poodleshrimp how is acupuncture helping! Please keep us posting on the holestic successes.

[Hidden]

Agree with all above. I'll be into my second year with PMR/GCA next month and still only taking 7mg.

Find the 'Dead Slow and nearly Stop method. It's working for me and only had one hiccup in almost 2 yrs where I decreased from 6.5mg then had to go back up to 15mg due to GCA

Anne

[piglette]

I love the way they say they want us off the steroids, as if we are clamouring to stay on them!!