GCA- Methotrexate : Hi I’ve been on prednisone... - PMRGCAuk

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GCA- Methotrexate

Qscrabble8 profile image
6 Replies

Hi

I’ve been on prednisone since October 2023 for GCA. The last four weeks I’ve been prescribed Methotrexate also, the intention is to gradually reduce the steroids. Since I’ve been taking the Methotrexate my leg and arm muscles feel weak, is this a common side affect of the drug.

Has anyone else suffered with this.

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Qscrabble8 profile image
Qscrabble8
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6 Replies
Sharitone profile image
Sharitone

I didn't have this with MTX, and if I were you, I would get it checked out. WebMD

webmd.com/drugs/2/drug-3441...

says this:

Tell your doctor right away if you have any serious side effects, including: mouth sores, diarrhea, signs of anemia (such as unusual tiredness, pale skin), signs of liver problems (such as nausea/vomiting that doesn't stop, dark urine, stomach/abdominal pain, yellowing eyes/skin), easy bruising/bleeding, black stools, enlarged glands/lymph nodes, bone pain, unusual pain and discoloration of the skin, signs of kidney problems (such as change in the amount of urine), dry cough, muscle weakness.

PMRpro profile image
PMRproAmbassador

It is something to report to your medical team.

Methotrexate made me feel awful and I was hardly able to put one foot in front of the other after 3 weeks. so stopped after barely 4. Difficult to say if it was weakness or fatigue though.

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer

No experience of MTX , but as advised needs to be reported…

Can I ask what dose of Pred you are on now, and why has MTX been suggested - are you having issues tapering?

Nothing on bio to know what going on, although looking at previous posts you seem to have had a chequered journey to date.

Qscrabble8 profile image
Qscrabble8 in reply toDorsetLady

Hi. I was 50mg prednisone , then gradually tapered down to 8mg when I started to feel poorly and my bloods weren’t good. The steroids were increased again. My consultant prescribed Methotrexate to help with the reduction of the steroids, saying there’s less side affects with methotrexate. I know the steroids have played havoc with my skin and I feel tired but I didn’t have any muscle weakness until I started taking methotrexate.

I did mention this to him, he thinks it’s the steroids causing this, but I’m not so sure.

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply toQscrabble8

Personal opinion -reduced too quickly so no wonder you felt rough and bloods raised.

I despair with the way some doctors race you down through the Pred -and then wonder why you flare. Wouldn’t say 50mg to 8mg in 8-9 is slow - GCA still very much alive and kicking.

And I wouldn’t say there are necessarily less side effects with MTX - just another set to contend with.

To be honest, a sensible dose of Pred would serve you better than too low a dose plus MTX.

PMRpro profile image
PMRproAmbassador in reply toQscrabble8

Being on MTX doesn't mean you can automatically reduce the pred fast - and it may take several months before the MTX allows any faster reduction at all. These doctors have a touching belief that MTX is wonderful - it may be for inflammatory arthritis but PMRGCA isn't an inflammatory arthritis and it only works well for a small cohort of patients - and has no adverse effects but there are plenty of us here who had to stop it as it really was unpleasant. In fact - being on MTX caused me to feel STEROID adverse effects I have never had on pred alone: I was constantly hungry and gained 1kg in a month, my hair fell out in clumps and my arrythmia was worse I'm sure. MTX intensifies the effect of pred, ostentiably that means you can manage on a lower dose to get the same antiinflammatory effect but that can also apply to any other pred effect. But they seem to be blissfully oblivious ...

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