Methotrexate - anyone on it? What's it like?

[Alwaysworthchecking]

I have Lupus SLE and been on steroids for a while now. Tried plaquenil but it just didn't work for me. Am soon to try methotexate. I'm a bit nervous about it but know I can't be on steroids for very much longer. Every time I try to reduce my dosage of steroids, I just end up ill.

Please share your methotrexate stories, advice and experiences. Thank you!

Hi i took methotrexate on a low dose a few years ago but not for lupus but for severe chronic Psoriasis. As i am sure you will probably know the major things i was told when taking methotraxte is do not drink alcohol and make sure you have good contraceptives in place. I had regular blood tests but never needed anything further (but was on a low dose)

My friends (bless them!) took me on an absolute bender the night before i started my treatment and i was so ill for the first 24 hours my doctor queried if i had had a reaction to the treatment - i hadnt but alcohol and this drug just do not mix!

If you take a high dose the advice used to be that you should not physically touch the drug - i was slightly paranoid and popped them onto a teaspoon to take them - but this advice should be printed onto your pharmarcy label.

Otherwise it worked well until i stopped taking it and had a `rebound' reaction but that might be just specifically for psoraisis and not lupus

hth

My dd takes methotrexate, she goes for regular blood tests, I'm not allowed to touch it, you can get mouth ulcers and feel sick after, but so far we have just had mouth ulcers and a few dodgy blood results so she just comes off them for a week or 2 until everything settles down again

Well I'll be - I never knew you couldn't touch it! I'll re-check the instructions. (Haven't taken any yet so not yet fallen foul of that one.) Rheumatologist said I could drink, but no more than the recommended daily amount. I rarely make it to that amount anyway. Hmm...I'll look into that.

Thanks!

I took it by injection, so hadn't heard of the touching thing. I took it for RA and it was wonderful (I'm off it just now to TTC and part of me can't wait to get back on it and feel normal again). I couldn't drink to start with but once my body had got used to it I was fine. You get great support when you are on it as well, same day GP appointments, regular checks etc - it feels (to me anyway) that the feeling of treading water alone against a tide of illness abates.

I was reluctant beforehand but the lightbulb moment for me on how effective it is came when I was marking medical exam papers. The students had met a patient with hands badly deformed from arthritis, but most of the marks came for saying "pre-methotrexate" because people of our generation are spared such problems almost uniformly.

DONT DRINK ANY ALCOHOL AT ALL!!!!!!! Please don't. Not sure whether the guidelines have changed in the last few years, but when I've taken it that has always been the first big thing that the doctors have said.

And, obviously, make sure there is absolutely no chance of getting pregnant whilst on it and for 6(?) months afterwards. [stand to be corrected on the period of time]

It's a shag, it's very strong, but it can be brilliant for the conditions it is used for. Lots of visits, blood tests etc. And it takes time to take effect. I had a weekly dose for 4 weeks at a time, I then had to see the consultant to get my next 4 weeks. They wouldn't let me have any more than that in my possession. Oh, and I had to "pass" the fortnightly blood tests (or is it weekly?!) in order to get my next batch.

I had not been told I could not touch it, that is new to me.

I hate it when I have to take it. Have taken on and off through my life from 14 yo to most recently, 3 years ago at 37yo. I took it for psoriasis too, with mixed results. Some courses, brilliant. Others, less effective. But of course, there are so many other factors with psoriasis and medical treatment alone is not the answer.

Good luck.

Mine was in tablet form. Extraordinary that such tiny tablets in a small dose can have such an effect on the body.

My sister in on this for Lupus/SLE and it has definitely helped. As others have pointed out, alcohol best avoided and there will be monitoring, blood tests etc. Also I think she has to supplement folic acid while on the treatment. So there are some downsides but the relief from painful joints and therefore the ability to lead a near normal, active life makes it worth it, according to her. Certainly to me she seems a lot better than before she started the methotrexate.
Good luck,
Claire

HI, I take 20mg weekly(plus other medications) for rheumatoid arthritis. Some people tolerate it well and others don't. I do touch the tablets to take them and have a glass of wine couple of times a week. All of this is fine with my rheumatologist.

Have been taking it for best part of 10yrs with time off for pregnancy. In terms of side effects the worst I have felt is queasy the day (or sometimes for no reason 2 days), and has sometimes made me completely exhausted! Also had mouth ulcers when I first started on it. Some people are very sick on the tablets and I know you can have injections if that is the case depending on how much you have to take. I also have 5mg folic acid on the 6 days I don't take the methotrexate to balance out the folate loss.

I agree not a lovely medication but for me it works in conjunction with other meds and allows me to live a fairly normal day to day life.

Anonbird maybe because the medication is for you, you are allowed to touch, but in my case it is for dd1 and I have been told not to touch and get dh to deal with it(again not to touch) if we were trying for baby or pg

Plum - Gotcha. Of course.

It's strong stuff, isn't it? Funny that you cannot touch a drug but you can ingest it! Mind you, Plum's suggestions makes sense.

I'll keep off the drink then. I already take Micronor contraceptive pill, so that's sorted. I did once start a panicky post on here about forgetting to take it, but that experience has made me a lot more careful!

Haven't started it yet, as I've got to have some blood tests first.

Runnerhasbeen, that's a good way to look at it: without these drugs, you'd be deformed and I'd be...well, dead I suppose.

Speaking of which, the leaflet that came with my box of methotrexate lists a load of side effects, ending with 'death' and then says, 'If you notice any of these, please report them immediately:' The colon suggests that sentence should have been printed before the list, otherwise I'm wondering how I'm supposed to report my own demise?! Heck, if I'm dead and haunting, I'm not going to waste my supernatural energies on the rheumatologist!

It's a form of chemotherapy, isn't it?

I took it for a few months for psoriatic arthritis, but found I couldn't sleep at all on it and had to stop. A month or so later I had shingles, which the doctor thought was linked.

The instructions on my tablets said they shouldn't be touched, too.

you are not supposed to touch it as it is cytotoxic but that is mainly for women of childbearing age as it can affect the foetus. it is an immunosuppressant and can cause ulcers of the mouth and because it is in this drug caegory is used for chemotherapy.