Methotrexate, how have you been on it ??

[Devoid]

Following pet scan , now have diagnosis of large vessel vasculitis, new treatment pathway of pred and methotrexate, interested in how others have felt

[AmyS1]

Been on MXT for 5 years a very effective medication.

[Devoid in reply to AmyS1]

THANKYOU, just wanted to get some balance as lots of negative things,thought it must suit some or it wouldn’t be prescribed 😊

[cornishjan]

I found the pills awful. They made me nauseous and I felt brain dead, couldn't do crosswords or read a book I hadn't read before. After taking them on a Saturday night I would sleep most of Sunday afternoon.

The injections, which I hoped wouldn't make me nauseous, are great. No nausea, my brain is back to normal (whatever that was) and the only side effect is I feel slightly more tired on Sunday afternoons. However, everyone is different and other people don't have the side effects on the pills. My second PET scan showed greatly reduced inflammation in the aorta etc so something is working. I am still on the injections but reduced from 25 mg to 15, hopefully soon to 10mg if this month's blood tests show continuing low CRP and ESR levels.

[Devoid in reply to cornishjan]

Thanks that’s great because they said I could have the injection if I didn’t get on with the tablets

[Hidden]

Devoid,

I’ve been on Prednisolone and Methotrexate since March this year. Initially I was on 40mg of Prednisolone and 15mg of Methotrexate. Now down to 5mg of Prednisolone and the on-going 15mg of Methotrexate. I have had no side effects whatsoever (low dose and lucky). I take folic acid the day before the Methotrexate which no doubt helps.

The medication seems to be working.

[Devoid in reply to Hidden]

Great to hear from you, this forum is a fantastic way to learn, goodness knows how people felt before as these illnesses can come like a bolt out of the blue and then you have just got to get on with it

[Hidden]

You only get negative posts on any drug (not just MTX) because people who are suffering are hoping for help ahd advice. But there are just as many patients who are taking MTX successfully. I have been on it on and off for years and on different doses. I'm still taking a low dose even now, for my Vasculitis, and would happily increase the dose if my rheumy wanted me too.

[BronteM]

My experience was the same as cornishjan - I found the pills dreadful with very similar effects to hers. My (then) consultant told me that I should believe in them more and that injections would make no difference, so I ended by changing to a different hospital and consultant and to successful treatment with rituximab. But, I have two neighbours using methotrexate for rheumatoid arthritis and they think it is marvellous and have no problems. One is on pills and the other on injections.

So you are very wise to ask beforehand and start with the knowledge that it is a ‘marmite’ drug that works well for many but can cause problems for others.

Be prepared to be firm if it doesn’t suit, or be relieved if it does!

[Christophene47]

I was on it briefly; it did not bother me as Azanthopine did. However, 2 unelated physicians, one a second rheumatologist and one a hematologist were not happy about me being on it citing potentials of causing cancer; that is not to say it will, but I chose to stop it. I believe the general research is that it's effectiveness is unclear. It should be your choice.