PMR flare with burning thighs

[Robinre]

Has anyone experienced burning thighs with PMR flare? I have had 3 flares in a period of two years but never with burning thighs. Am now back on 3 mg Prednisone and my normal symptoms have abated but have this new issue. Also has anyone read that if you have the MTHFR gene mutation you should not be on Methotrexate (SP?).

[Hindags]

I have burning thighs independent of flair. One of my earlier symptoms. On and off. Mostly during the first few days of a taper, and generally in the late afternoonll. The sensation reminds me of Somethinn I felt sometimes many many years ago during menstruation. I'm on 10.5 now, no worse than at 20 or 15mg.

I'm curious re the gene mutation. What happens to people with that mutation who take methotrexate. Do doctors regularly test for the gene before prescribing? Is this a new research finding?

[Robinre in reply to Hindags]

Hi, as for Methotrexate and MTHFR gene mutation I have just started my research on this with help from my Immunologist. Don't know side effects of this yet. As far as I know, I bet the answer is "no." In fact my doctor treating me for PMR (not the Immunologist) never touched on this when he mentioned Methotrexate. Most doctors are just beginning to understand how serious the MTHFR gene mutation is.

[Tj2017]

Yes. I have experienced burning thighs. Pre and post prednisone with flare.

[MaryWR]

I had burning thighs for a long time. They would go numb and then burn very painfully - usually when standing or walking. It did not respond to steroids in fact it started a month or so after I had been on them. Now I am down to 3.5mg it has gone thank goodness. I think it is a steroid side effect - or it was for me. If you search I think you'll find some references to this. Good luck

[Robinre in reply to MaryWR]

Hi, I have done a lot of research but there is really nothing the same as people really experiencing this issues themselves and what "they" have done to help themselves (as doctors now certainly don't seem to be able to do).

[polymy]

Hi Robinre,

I have experienced burning thigh and upper arm muscles during a flare. It is very unpleasant. My rheumy didn't offer any explanation. It made my arms feel very weak. It passed when I again raised my steroids. I don't think it is anything to worry about.

Best wishes,

Liz.

[Sallyaches]

i took methiotrexate for a year and it was mainly liver and renal function that was tested for. However before I started Azothioprine I did have to have a special enzyme test to make sure I would break down the drug properly. I was fine so obviously I have the gene that is responsible for making the enzyme. Someone with a different variant of the gene may not make the enzyme so could not handle Azothioprine as well. I haven't heard of enzyme tests for Methiotrexate though

Best wishes

[Robinre in reply to Sallyaches]

You have a good doctor that did this test for you. My doctor never suggested any special tests at all.

[Hidden]

Yes, I have a lot of pain in my thighs, in fact this is where my PMR all started. I get it with pred withdrawal and have found heat (as hot as you can reasonably get it) the very best treatment if it is pred withdrawal, doesn't work as well if it is a flare, but is still comforting.

[Hindags in reply to Hidden]

From your experience, maybe the efficacy of heat in calming burning thighs may be a way to differentiate Pred taper from flair. :)????

[Hidden in reply to Hindags]

yes that does seem to be the case for me and is very useful in the week or two when I am coming down on the pred......