Anyone having any luck with treating PMR without any specific medicati

At the moment I am on 5mg of presidone but about 4am I wake up sore take one tylenol go back to sleep and feel better waking up which is about seven am.............Madeline

Sadly, I am like you and I have so much sympathy for you. Nothing that I have tried up to now as worked in fact the side effects from the steroids and methotrexate were much worse than the pain from the PMR. I am interested in your question because I would like to come away from the conventional medicines and their horrendous side-effects. It is a horrible disease and I think it is pretty hit and miss if the medication helps we are not alone good luck.

Try Actemra infusion. It has helped me

My rheumatologist hasn’t put me on anything yet because he hasn’t called me back with my lab results. I already know that 3 of them are out of range. I’m calling his office tomorrow because I want answers.
In the meantime I recently read a study by NIH about 5 patients that were only treated with 600 mg of ibuprofen and all had relief. So I started that yesterday.
The pain is much better today. I also took 2 Tylenol Arthritis a few hours later.

Unfortunately my story is very similar to yours. I have had PMR since April 2023. I have been on many PMR medication’s which only make me feel worse. I am really afraid to try any other medication‘s for PMR because I have not had good results with any of them I think I have a problem taking these medication‘s all together. I wish you the best of luck!!! keep in touch and let me know how you’re doing with your PMR pain and medication’s. Thank you! Very best wishes to you going forward!!!

When my symptoms of PMR first slammed me, I tried treating myself with ibuprofen. 600 mg is less than the daily allowed dose over the counter, so I know I took more than that. It had no effect on me. My first doctor put me on meloxicam, which is a stronger nsaid. It did have some effect, but I was still nonfunctional. It was not until I was correctly diagnosed and given prednisone that the symptoms were completely chased away. Now everyone is different, so I have not doubt that some people can be treated with ibuprofen, but I doubt they have a serious case of PMR, in my opinion.

Is it true that rheumatologist don’t like to put elderly people on prednisone? I’m 69.

I was 68 and my rheumatologist had no qualms about putting me on prednisone for a year and a half. He also said I could go back on if I needed to, at 70.

That is a good question!

I think most rheumatologists are reluctant to start elderly people on prednisone for reasons related to the side effects. The problem with PMR is that historically not many alternatives existed. It was prednisone by default because of the lack of a better option.

The potential for complications from the "long term" use of prednisone is true at any age so it isn't just a risk for the elderly. Treating PMR with prednisone is a long term proposition as my rheumatologist said at the start. She said I would need Prednisone for a couple of years. A couple of years can easily turn into 5 years ... 10 years or longer for many PMR sufferers who just happen to be elderly. I have often wondered how many people diagnosed with PMR end up taking Prednisone for the rest of their life???

In my opinion, there needs to be a better alternative to the long term treatment with prednisone for PMR especially for the elderly. The medical community is well aware of this problem. They aren't ignorant for wanting us to taper off prednisone as soon as possible and to take the lowest effective dose.

Technically ... I still have PMR according to my rheumatologist. My rheumatologist and I are very happy that I'm finally off Prednisone after 12 years. My treatment with Actemra has achieved remission of PMR and is also preventing PMR relapses which was something Prednisone didn't do so well in my case. It had nothing to do with how I tapered.

Prednisone is good for the rapid relief of pain while we wait for PMR to go into remission. It can be a long wait for remission to occur. The trade-off for rapid pain relief from Prednisone is the significant potential side effects, particularly with long-term use.

My chart at the rheumatologist's is interesting. Under problems, it lists these:

1. GCA
2. Long term use of corticosteroids (prednisone)
3. Use of a high risk medication (Actemra)

I'm off prednisone now, so I'm down to 2 major problems.