Holy crapola! Methotrexat question

[Alwaysworthchecking]

I've got Lupus SLE and have been on low dose of steroids for 3 years...or maybe 4...I can't remember. (Isn't Lupus great like that?) However, my rheumatologist wants me off them and on methotrexate. I took the full dose, as recommended, on week one and felt awful beyond awful for several days. It was like being poisoned.

I spoke to my GP, who suggested cutting the dose by half, but I chickened out of that and cut it to 1/4 dose. Much better, but still feel awful abut 24 hours afterwards. Not as awful as before, but still not good. GP said I should keep at this dose (I confessed about the lower dose) until I can tolerate it and then gradually increase. However, it's been 3 weeks now and I don't feel at all tolerable!

I'm meant to have blood tests every two weeks and I forgot this week, as it's half-term. Was speaking to a GP friend today, who has just put the fear of god into me, re. forgetting the blood test. So obviously I need to get that done tomorrow and to stop worrying about what the methotrexate might have done tome in the meantime. (Not easy - she was quite menacig and the word, 'leukaemia' is enough to scare anyone, right?)

I just wondered if anyone else has had a bad time on methotrexate, what happened, what your side-effects were and whether you eventually tolerated it or had to give up? Frankly, I'd be happy never to take it again, but I wanted to give it a good go. Apparently what they offer me next is likely to be even worse. Such fun!

Anyway, if you're still reading this, here are my side effects: about 24 hours after taking it I suddenly become very tired - have to lie down RIGHT NOW tired. I feel nauseous and dizzy. I have a feeling of pressure behind my ears (like when you rapidly gain or lose altitude), my tongue hurts, my throat feels sore and my mouth kind of 'buzzes'. Eating makes my mouth feel worse. My tongue feels swollen and I feel uncomfortable talking but when I check in the mirror, my tongue looks the same as ever (so it's not actually swollen). My feet ache, my ankles ache, the backs of my legs ache and my knees ache. On one table a week this lasts one evening and the sore mouth lasts the following day. One four tablets a week it all lasted 3-4 days and was much worse.

Anone I know on it raves about it, so please do speak up if you weren't so keen. I'm feeling a bit of a freak, right now!

I think you need to go back to the rheumatologist tbh. Did nobody explain WHY you need the blood tests btw?

Thanks, Northernlurker. Not in specific terms. It was rather vaguely worded, as I recall. (I know recall isn't my strong point, but this was only one month ago.) The rheumatologist was quite clear that I needed the fortnightly blood tests and had it not been for the mega change in routine that was half-term, I'd have had the one I was due this week. However, the GP friend mntioned luekaemia and that's got me worried (and sleepless). I've got a rh app't in Nov so I'm seeing him soon. Can't really get an earlier appt - they are like hen's teeth.

Thanks for repsonding - much appreciated.

Did the rhumatologist suggest that you take a folic acid supplement while on mtx? it can re3uce the side effects.

Hmmm well I think the rhematologist is at fault for not spelling out the effect that methotrexate can have on your immune system henc the blood tests. Anyway you're fixing that now.

I don't know a lot about lupus but I do know that prolonged steroid use isn't good for you either. Maybe ring the rehematologist's secretary and leave a message to the effect that you're not able to take the whole dose, are struggling and would appreciate a conversation about this. If he/she could ring you or arrange for a specialist nurse to do so (if they have them) it might be useful.

shitmagnet, he did try me on Plaquenil first but it didn't have much of an effect on me. By the time I'd weaned myself off the steroids I was so ill with lupus that I couldn't move and was in constant pain. So then it was back on the steroids for a couple of years.

The rh started me on 10mg of methotrexate and 10mg of folic acid the following day. The 10mg methotrexate made me feel dreadful. It was the GP who suggested I reduce the dose to 5mg and me who decided, sod that, and reduced it to 2.5mg, which still makes me feel pretty bad. I didn't know about taking the folic acid on more than the day after - thanks for the tip. I wish I wasn't on the methotrexate at all, tbh. I'm trying to give it a good go (much as I did with the Plaquenil - maybe I should think about where that got me!) and not give up too soon, but it's not nice.

I am at 'complete amateur'.

Northernlurker, I'll call the secretary and see what she says - thank you. There is a rheumatology nurse, so she might call me back. The rheumatologist eplained a little, but not much. He was an hour late for my appointment so I think both he and I were keen to get out of there by the time it was my turn. (I was the last one in and the nursing staff followed me out of the door afterwards.) I didn't ask enough questions and he didn't offer enough info.

I went for the blood test today. I've been naively assuming that the surgery would call me if there was anything amiss with the previous results, but that may not be the case. (I sound really stupid, I know - I've just been following the path of least resistance.) I'll call them too, next week.

I think they would have rung if your resuolts showed an issue but no harm in you calling either. Hope things get better next week.

You really need to go and speak to your rheumy spell out you concerns and side effects. Tbh if you are getting bad side effects on 2.5mg then it may not be the drug for you although they might like you to try it for a bit longer.
I've got RA and have been on 20mg of Mtx for many many years. I took a break to have DS and it's never been as effective since. Have gone up to 25mgs which was miserable and now am on 20mg with Anti-TNF (which is terrifying )
Folic acid should help... You can take it everyday except the day you take mtx if needed.
I take mine on a Saturday night before bed so I sleep through the worst of it and I've got Sunday to recover if needs be before work on a Monday.
One friend on it takes it after a chip butty she swears it helps to line her stomach before and stops the worst of the side effects.

Oh meant to say the importance of the blood tests....
Mtx has unseen side effects to your blood & liver and can make you more susceptible to some quite serious unseen problems. The blood tests monitor this and keep an eye on things to avoid serious complications. Mtx is safe as long as you keep up with monitoring but you must keep on top of it.

Another issue you could raise with your consultant is moving from tablet to injection metho (think you're on tablets from the above?)

This can have a real effect on how you react to it.

Second everyone that says about the blood test and folic- your friend should not have put the wind up you, and should know better as a GP! The test are important but you're not going to explode if you miss one occasionally.

With the steriods, whilst long-term use is not great, if you can get yourself down to a low level, say 2-3 mg per day (apologies if I've just used the wrong measurement and stated an elephantine use, but I'm sure you'll know the dosage!) then it's not too bad.

However, end issue is that if the drug doesn't suit you, then get your doc and consultant to keep on trying- best of luck.

DH was on MTX for his PSA, and didn't het on with it due to the side effects,

My DM has Lupus SLE, she has never been on MTX, but was on plaquenil and a few others. She is ow on an infusion of Rituximab for her lupus, and it does seem to have it more or less under control.

Blood tests are really important for keeping an eye on levels - even the slightest change in levels in DH's blood were investigated.

OP hope you are feeling better [hshock] at gp friend. Not sure where the leukaemia is coming from. Methotrexate can affect the liver so not recommended in people who drink alcohol to excess, also can affect your immmune system as is an immunosuppressant and so can reduce you white cell count. they also check kidneys and esr. your low dose will be ok for an extra week re blood test but glad you are getting it done tomorrow.

Methotrexate is a foul and vile drug.

Are you sure she didnt mention Luekemia because it is a common chemo for the disease? Could you have misunderstood. It almost killed my DD when she was on treatment for ALL. But they use HUGE doses in those circumstances.

It seems weird luekemia would be a side effect of a anti luekemia drug.

It was suggested that I might go on it at one point but I would rather stick pins in my eyes. Luckily my condition seemed very much stress related and I dont get much trouble now.

It is a very toxic drug but I dont know much about the levels they give for lupus and rheumo type illnesses.

I am sorry if my post doesnt help. I know its a bit extreme but I hate the stuff. I would only take it if there was no alternative.

But I really do not think can cause luekemia. I am not medically trained though so you would need to ask an expert.

DM has been on Methotrexate for more than 5 years for RA and its had a magic effect on her. None of the side effects that you describe, so I can only sympathise. Seem to remember that it needs a good few weeks to build up in the system, so perhaps perseverance may pay off.

I understand that the bloods are to monitor liver function so are important but don't think you will keel over from missing one.

DM used to have her blood tests done at Rheumatology and the results sent to GP until there was a minute variation in the result, the GP panicked and advised her to stop the medication. 2 weeks later, in absolute agony and back to square one, contacted the Rheumatologist, who advised to start again as the GP had over-reacted. The tests and monitoring both happen at the hospital now. The moral of that story is, get your test results interpreted by someone who knows how to read them in context and who has an appreciation of what state the withdrawal of the medication will put you back to.

Hope you get some better results from it with fewer side effects in the future.

Oh, very accurate description of side effects of it. Have taken it for 3 years now fro RA. Is very effective drug for me, but hard to tolerate the side effects. I combine it with an anti-TNF as well, but it's teh lack of methotrexate I notice if I skip it due to infection. I get your side effects at 10mg orally for a couple of days,a nd feel ill for 5 days on 15mg, which works on the RA. Have moved over now to injecting it - 17.5mg a week. Voila, no more problem. Sub cut injection is possibly the way forward for you?

NB I have my liver function tests every 2 months now that I've been taking it for ages. No need for more frequency in my stable case now, says my rheum.

And yes, all I've ever heard re: leukaemia is that MTX is a treatment for it (and some other cancers)

I've been on and off the mtx for my ra, each time has brought new side affects, my fave being my hair falling out. Last time was stomach problems, I usually take mobic or losec to help. Its an amaziing drug but its side affects are fierce. Incidently my rheumy didn't tell me either. I had to learn from a support group I recently set up. Shocking

I had a horrid reaction like that to methotrexate. Went to hospital and they stopped tablets IMMEDIATELY as I was obviously allergic. They make you feel crap but not THAT crap!

Get thee to a dr for tests it's a nasty drug to play with... Good luck!

The big danger from large doses of Mtx is mucositis. In mild cases this means mouth ulcers. In extreme cases this means losing the entire mucus lining of your mouth all the way down through your stomach and bowel.

This is what happened to my little girl.

Oh, thefirstMrsDeVeerie. :( Your poor little girl. I do have mouth ulcers - only very tiny ones, mind.

HeidiHole, an allergy would not surprise me as I seem to have been developing a lot of those over the past few months. Where it was just milk, soya and lentils I have now added chocolate, nuts and raw eg white to the list.

Thanks for the advice, everyone. Good to read of other people's experiences.

Th GP friend didn't mention leukaemia directly - she gave me another word, which I cannot now remember and I did not know the meaning of. I looked it up and it seemed that the end result of this was possible leukaemia.

I'm on tablets for the metho and currently have my steroids down to 7mg (10mg is the max dose I've taken) and am hoping to get them to 6mg within the next fortnight. I feel OK once the side-effects of the metho have worn off (bar the occasional sore mouth) but horrible while they last. I don't lie the idea of taking them on a Friday as I use my weekends to recover from a week's work and managing lupus - I can't see how I'd ever get on an even keel if I took that away too, though I can see the sense of the idea. It's just good to pretend t be 'normal' for a couple of days at a slower pace. On methotrexate side-effects 'slow' would be reduced to 'shut down'.

Nobody warned me about the lupus getting worse before it gets better, either. You'd think there'd be a list of 'things to make the patient aware of,' but I'm guessing there's not!

If you're getting mouth ulcers try a medicated mouthwash like corsodyl - it's a bit vile and you need to follow the instructions (it can stain your teeth if not careful) but it really helped when I got them when I first started on mtx. This side effect wore off for me in time. I only get them now if run down & flaring (I think it's my body saying it can't sort out anything more too busy with RA etc) or if I cut or scratch inside my mouth which takes longer to heal since I started on mtx

do ask for the injectable form to try before you give up on Methotrexate.

Thanks wonkylegs (great user name!) and merryberry. I'll ask about injections. I've got some mouthwash and will go and look if it is suitable. Listerine, I think - it's like gargling with fire!