Methotrexate : Hi all, I was just... - Scleroderma & Ray...

Scleroderma & Raynaud's UK (SRUK)

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Methotrexate

SarahJane926 profile image
9 Replies

Hi all,

I was just wondering if any of you are taking Methotrexate for Scleroderma? My specialist has recommended I change medications due to the impact it's now having on my joints.

Could you let me know if it helps and how you manage the side effects (if any).

Thank you, best wishes!

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SarahJane926
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9 Replies
sbbtd profile image
sbbtd

I take methotrexate for scleroderma. I decided to wean off because I didn’t understand why I was taking it (and doc couldn’t offer any suggestions) and started having extreme joint pain. Restarting the regime reversed the pain. Apparently the inflammation causes my malaria is similar to autoimmune and taking the drug reduces that side effect.

Hi! I've been on methotrexate for almost 3 years now, started on tablets but due to tummy problems my rheumatologist changed me to injections..... I'm on 20mg weekly. Like you, my scleroderma was causing painful joints which were agonisingly stiff every morning taking several hours to get moving. Methotrexate has worked for me although I must stress that it wasn't instant..... probably 2 or 3 months before I really noticed the difference. If I have to stop the mtx now for whatever reason.....surgery, infections etc I really do get a reminder after a couple of weeks what life was like before mtx.....painful swollen joints rapidly return 😕 As to side effects, well everyone is different and I have my share of them but I think the most important thing is taking enough folic acid.... I'm taking 5mg tablet every day including mtx day and hydrate with lots of water day before, mtx day and the day after. Would I recommend mtx? You betcha! 😊👍

I wish you the very best with your future treatment X x

MilkMaid profile image
MilkMaid

I have been taking Methotrexate for a couple of years now 10mg per week and folic acid on the other 6 days. It took about 6-8 weeks to kick in but I wouldn't be without it now, have tried to reduce the dosage but the joint pain & stiffness returned after about 10 weeks. I take mine in the evening with a good meal & plenty of water. Only side effects really were brain fog & extreme tiredness for a couple of days after taking the MTX, these were mostly during the first 6 months of taking the drug & I don't get them very often now. Worth a try but you have to give it at least 3 months to see the benefits.

Reyzor profile image
Reyzor

Quite a number of years ago I was prescribed Methotrexate for psoriasis and psoriatic arthritis. This medication began destroying my red blood cells, so that was the end of that.

Jensue profile image
Jensue

I’ve been taking MTX for about 6 - 7 years, I take it on the same day each week in the early even & on the other 6 days take Folic acid. I found it made me feel rough to start with but settles after about 3months. It has helped with the pain and also how I actually feel.

I’m checked thoroughly with regular blood tests & my GP checks the results & they also go to my consultant too.

Tranhare profile image
Tranhare

Hi Sarahjane, my rheumatologist in Scarborough referred me to Dr Del Galdo at Chapel Allerton Hospital in Leeds where he immediately started me on Methotrexate and Folic acid, I had eight months of side effects where I had two to three days each week where I didn't have the energy to get out of bed let alone go to work. I got no relief from the painful joints, swollen hands etc. After ten months of taking it I took advice from the Doctors at the clinic , it is an aggressive drug after all and as I wasn't receiving any benefit I chose to stop taking it. This is just my experience and really you can give it a try and if it works for you great, if it doesn't at least you have given it a go.

SarahJane926 profile image
SarahJane926

Hi all,

Thank you for all your advice (sorry for the late reply, locked out of account) I have to have the usual tests and then I think I'll give the drug a try!

Thanks again, best wishes x

chockers profile image
chockers

I been on Methotrexate for scleroderma and PA other auto iummue things . For 14 years . It's a good gold standard drug if work well it's good

spotta profile image
spotta

I have morphea and have been taking Methotrexate since okt 2018.

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