Methotrexate for my PMR

[Musiclady18]

I've been on methotrexate for my PMR for over 1 year but I find that I am really tired. Before PMR I did love my sleep but now I seem to get tired so quickly. I am pretty active but when I am tired I am out ! Is this a normal reaction? Any advice ? Thanks to this forum, and the many voices of PMR and real life experience

[Omakaat]

Hai Musiclady 18,

Tired on MTX? I have been a regular user of MTX, subcutaneously. And yes, it causes fatigue in a lot of people. Myself included.

Over the years I found that taking my folic acid, 5 mg twice weekly as much separate as possible from the MTX - your doctor probably told you this as well - religiously helps a bit.

Drinking lots of water in the 48 hours after the MTX is really helpful, at least 1,5 -2 liters in my case. I tend to drink too little.

MTX and Pantoprazol ( is that the English name? Not sure, I live in the Netherlands) do not mix, at least not in my body. Completely wipes me out. So I try and brave the gastrointestinal upset in the three days following my weekly MTX dose. After that I can take Pantoprazol again and not feel like I reverted to a lower life form.

And, this is so boring I hesitate to mention it, eating really really healthy, 5 a day in the UK, in the Netherlands: 300 gram vegetables especially the greens(!) and two fruits, all breads and cereals whole grain, certainly no empty calories, yes it helps a bit too. Probably because it ups the folic acid intake?

Feeling tired after the least bit of effort is an recurring aspects of our disease, not helped a bit by the strain the prednisone puts on our bodies, let alone the added tiredness from the MTX. It is a like an ocean of treacle we have to wade trough. Hope my tips helps you a little.

All the best! Oma Kaat

[PMRpro Ambassador]

I only took methotrexate for a month - the fatigue was overwhelning and I was unable to function. It isn't uncommon for a couple of days after the weekly dose but after 3 weeks I only had half a day feeling almost normal - just as the next dose was due.

[potterylady in reply to PMRpro]

Exactly what happened to me!

[rcwz]

I was taking 20mg/week for about 3 years. My rheumatologist increased my folic acid (5mg/day) to 6 days a week (none on MTX day) and that did help a lot but there was still a lot of fog.

I've recently been able to stop it and I feel a lot more human and brainy than with it. It was a great help for me, enabled a large prednisone decrease -- but I sure don't miss it.

[potterylady]

Hi, I tried MTX and was so tired I just wanted to stay in bed all day every day. I had no motivation and couldn't think clearly. I stopped taking it because I felt I wasn't having much of a life with it. I only took it for about 4 weeks. Good wishes to you on your health

[oigor]

Hello, it looks like I am breaking consensus here - I did have weekly MTX injections for a year (with 1 mg folic acid every day except MTX day) and did not have any significant fatigue/tiredness. The goal was to taper prednisone further from 2-3 mg, but MTX did not help at all, so I asked my rheumatologist to stop MTX.

I did have frequent colds/flus for any reason or without a reason though while on MTX, I do not have those that much without MTX.

I am 67 (almost) year old male in US - San Francisco Bay Area, got PMR at 63, no GCA (thanks God!). Originally from Moscow, Russia, so my genes are suitable for PMR - "Northern/Eastern Europe".

[PMRCanada]

I’ve been on it over two years, 15mg injectable weekly, 5mg folic acid daily except that of the injection. No side effects except some minor hair shedding, and susceptible to colds/flu when at a higher dose. It’s helped me lower my pred dose 4mgs thus far, slower taper last 2 drops due to adrenal system trying to sputter back to life. I’ve not really had much fatigue at all except during my last two tapers due to adrenal insufficiency (I believe).

What dose of pred are you on? Could it be fatigue due to adrenals struggling? Have you always had fatigue (before and after starting MTX)? As shared on here, MTX doesn’t agree with everyone. I seem to be one of those patients for whom MTX is working….but then again I seem to tolerate pred pretty well as well, I just got stuck at 9mg for almost two years so had to try a steroid sparer to help me lower my dose further.

Quality of life does account for a lot. Perhaps you could explore other medications that better suit you. A rheumy should be able to advise you of your options. You’ve tried a significant time but it sounds like something needs to change to alleviate your symptoms (fatigue).