Metaxalone.

[Joann63]

I was diagnosed with PMR September 2023 but I'm unable to have steroids. Due to a heart condition I'm also unable to have Immuno suppresants. My Rheumy has now prescribed Metaxalone for pain relief. Reading the side effects I'm not sure I'm happy to take them as they can affect your kidneys and liver. Is there anyone else on these and if so how do you cope with them. I've had 2 appointments with the Rheumatology Dr and i have to say I'm still not confident in him

[piglette]

If you have had PMR since September 2023 and are not allowed steroids you must be in agony. I could hardly get out of bed when I was diagnosed. Is Metaxalone working for you? If so, it may be worth checking you really have PMR. Steroids really are the only answer to PMR. I am surprised that you cannot take steroids due to heart problems.

[Joann63 in reply to piglette]

I'm allergic to steroids diagnosed 30 years ago all types that's why I can't have them. I cant have immuno suppressants due to heart condition and my kidneys. Yes I'm in agony and struggle to do the simplest of tasks. Metaxalone can affect kidney and liver function and I'm hesitant to take as my kidneys were affected by a heart tablet I tried 5 years ago.

[piglette in reply to Joann63]

As Sillydogsmum suggests it may be a good idea to check with your cardiologist, as a lot of things have changed in thirty years.

[Joann63 in reply to piglette]

I will never be given stetoids again in either tablet or liquid form my reaction to them is very very severe.

[piglette in reply to Joann63]

Do you know which steroids you had that caused such a bad reaction?

[Sillydogsmum]

Have you run this past your cardiologist? On steroids we all have increased risk factors for cardiovascular events but these are greatly minimised as long as cholesterol, blood pressure, kidney function etc are monitored and treated if needed. I would have thought a risk/ benefit discussion about steroid or other anti auot immune medications with your particular heart condition might be useful. Also the suitabilty of other types of treatment such as Mtx or clever 'mabs'. Did your rheumato not raise the poss of other medications ?

[Joann63 in reply to Sillydogsmum]

I may as well sit in the corner and let my rheumy talk at me for all the explanations he gives. I've spoken with my Heart Failure nurse yesterday she's arranged a chat with my cardiologist early March

[PMRpro Ambassador in reply to Joann63]

That's good. And I'd be seeking a better rheumy ...

[Sillydogsmum in reply to Joann63]

Thats great. Perhaps gen yourself up on possible alternative PMR treatments to put to him. Folks with transplants are on immunosuppressants so i dont imagine they are completely forbidden in heart disease. Are you absolutely certain you are allergic to steroids.......its very uncommon?

[PMRpro Ambassador]

I agree with the others - I think you need to discuss this with your cardiologist.

I have never heard of Metaxalone - it is a muscle relaxant and I honest can't envisage how it is likely to help with PMR. The pain is due to inflamation and ordinary painkillers almost never help even to take the edge of, how they think a muscle relaxant will help defeats me. I have certainly never heard of it being used in PMR.

I had 5 years of PMR without pred. I found heat before getting out of bed allowed me enough time to get dress. The best mobility aid was to get straight into a swimsuit, drag myself to the car and go to a warm pool for an aquafit class. But the time I had done 45 mins in the pool,. I could move enough to do a Pilates or Iyengha yoga class. The pain was also SLIGHTLY less once I could move - never entirely gone but better. The best time of the day was after a glass of wine with dinner.

[Joann63 in reply to PMRpro]

Thanks its very frustrating as after 2 visits with the Rheumy I'm no closer to help and even further away yo having any confidence in what he's suggesting

[Jarofclay]

I am in the US. I am newly diagnosed with PMR and my doctor is an Integrative physician who has a lot of experience with low-dose naltrexone (LDN). I began a prednisone taper in November, starting at 40mg and tapering to 10 mg over the course of ten days. It brought my pain levels from extreme to zero. On January 2, I started taking LDN alongside the prednisone with the intention of transitioning completely to LDN. Because LDN doesn't interact with other meds or suppress the immune system, (and yet it is an effective anti-inflammatory) it holds promise for use with autoimmune conditions, especially where the patient is unable to take steriods. I started the LDN at 1.5 mg and increased to 3mg after a few weeeks. So far I've been able to go down to 5 mg on the prednisone without any pain. My rheumatologist suggests decreasing to 2.5mg prednisone next week, and then off pred completely 2 weeks after that. We will see if the LDN can substitute for the prednisone and keep pain and inflammation levels down.

I have no idea how this will go... . but I thought I would mention it as an option. There is a world-wide non-profit called the LDN Research Trust, where PMR is listed as one of the conditions that have been helped by LDN.

If others here have tried this, I'd be interested to hear your experience.

[PMRpro Ambassador in reply to Jarofclay]

If you wanted to get an answer you would be better posting this as a new thread - just because of the way HU works. People just don't see stuff in the middle of an existing thread.

A few years ago someone in one of the Scandinavian countries said they were being put on LDN by their doctor and would report back how they got on but we never heard any more. It would be interesting to know how realistic the comments from PMR patients are, My daughter uses LDN for autoimmune thyroid problems and ADHD and thinks it is great.

[Sandmason in reply to Jarofclay]

I'm on 4.5 LDN in the US too, since October. At 8.25 Prednisone now, tapering a bit faster now, from 20 last March. My CRP has gone up though, and I do have some mildish flares.No side effects at all from the LDN and no way to measure if or how it is helping. I don't think it hurts though.