Can I ask on behalf of another WG person how people have found taking Methotrexate?

[SusanCh]

This lady is suffering bad side effects but has been told that she needs to be on this as other meds haven't worked. Injection instead of tablets have now been suggested.

[SwgS]

I was relatively ok up to 10mg,just an upset tummy the next day,over 10 i have felt very sick,headache,upset stomach.And now at 17.5 i lose 2 days of the week, the first in bed sleeping through as much as possible,the next with stomach upset,hate the stuff

[vivdunstan Volunteer]

I got bad nausea, diarrhoea and hair loss. Oh and spectacular stomach pains, which was sort of like really bad period pains, but happened for the first 3 weeks solid (my hot water bottle was my best friend!), then happened for days after every weekly dose.

I take anti nausea pills to deal with the nausea though, and have anti diarrhoea pills to help with the diarrhoea. And the stomach pains have eased over time.

Methotrexate is just one of many drugs I'm on now. I'm also still on Azathioprine and Mycophenolate Mofetil, and now take Thalidomide too. I have cerebral vasculitis. And high dose of steroids of course.

[vivdunstan Volunteer in reply to vivdunstan]

Forgot that I also get mouth ulcers from the Methotrexate. This is a known common side effect that medics warn patients about, and is detailed in the patient information leaflet for Methotrexate. More thorough dental hygiene can help, but people should still expect to get mouth ulcers. Sometimes mouth ulcers cause people to be taken off the drug. In my case though I've just had to battle through them, on the consultant's orders. My vasculitis is too aggressive and difficult to treat for this side effect to put this treatment off.

[gsmith in reply to vivdunstan]

try folic acid for mouth ulcers i find it helps, your doctor should have told you

[vivdunstan Volunteer in reply to gsmith]

I've been on folic acid since the day I started the Methotrexate. It doesn't take away my side effects, and it doesn't stop my mouth ulcers.

[pwc51]

It's horrible! I was on 25Mg of tablets before my flare - generally felt nauseous the following day. Once the flare was under control (Rituximab) I was put on the injection (15Mg). I still feel low the following day but it is probably slightly better. Having said that the period of feeling low seems to be extending as time goes on and has recently been extending to 3 days!

[DevonLottie]

I inject 20mg weekly. Previously I was taking 25mg orally and this started affecting my liver - the lower dose injected is just as powerful but my liver can handle it. Apart from feeling 'under the weather' the day after, I find the drug extremely effective as part of the maintenance regime.

[Dramaticharlie in reply to DevonLottie]

how does this work? how is injecting less damaging on your liver?

[Essex-jill]

I have previously taken Methotrexate without any adverse side effects, although it was not very successful in maintaining a state of remission for me.

[Dramaticharlie in reply to Essex-jill]

I dont have any side affects either, but I don't think its working very well, im worried about what will happen next. What are you on instead?

[NoelHickson]

I have been taking methotrexate for two years. So far evrything has been ok. I used to have blood tests every 6 weeks now its every 2 months. I'm on 6 tablets per week.

[JanetR]

I do a 25mg injection every week because my stomach is affected badly by tabs. Also taking prednisolone 10mg/7.5mg alternate days, with lanzoprazole to keep stomach healthy, and anti-nausea pills I usually need first day after the injection. When I first started it I thought I might be suffering hair loss, but this has calmed down. It seems pretty effective at keeping the condition stable.

[gsmith]

eight tablets once a week,for around 4 years,my last blood test showed my liver profile up and a tender spot when my gp jabbed his fingers in it, i am interested in the replys of people feeling down, as i have been getting spells when i feel very low, and this is not me, and more tired than usual

[Dramaticharlie in reply to gsmith]

This is the only side affect I get, but I am undecided if it is the methotrexate or the condition which makes me feel tired.

[magcor]

I take 15mg weekly with 5mg foliic acid and have been on them for 9 yrs.

A year ago I started to feel very nauseaus the day and follwing one after taking it. I now take cyclizine with it and every 6 hours for the next 2 days. That has helped.

[Tony-LakeDistrict]

I too was on Methotrexate for Microscopic polyangiitis , I went for a second opinion to Prof. Savage at Birmingham, she put me on Mycophenolate, a more modern drug than Methotrexate, it certainly accelerated the downward trend of my p-anca, & did not seem as toxic to my system, but I did "sleep for England"

Tony

[PATGW6IMS]

Hi Pat here i was on methotrexate tablets for two years with very bad side efects i asked my consultant about this & she sujested injections,

I have been on injections for two years with only one day of side effects.

I inject myself on a Saturday morning & have side efects on the Monday.

My quality of life is now 150 per cent better.

Hope this helps it is very easy to inject the needle is only three quarters of

an inch long & very fine I say go for it yours Pat GW6IMS

[Maureen10]

Hello I've been on Methotrexate tabs (20mgs then 25mgs cause I had a wee bit of a flare) now on 22.5mgs orally weekly with no side effects to speak off. It seems to keep things settled for me. Hope this helps.

[JimL]

I have been on 20mg of Methotrexate (mtx) once a week and 5mg of Folic Acid three days after the mtx and have had no problems at all. However I do know quiet a few people who DID have problems with mtx, the problems were solved by taking half the dose in the morning and the remainder in the evening.

I do not know why splitting the dose should help but iut does seem to help some people, so might be worth a try.