Methotrexate!!!!!

Posted , 5 users are following.

Ok, so just been seen in clinic - I have been started on 15mg methotrexate and a they have doubled my dose of the plaquenil. I think they have only just realised that I may actually be getting worse!

Is anyone else taking methotrexate and plaquenil for SLE?

There are some encouraging posts about it being used for psoariatic arthritis. The rest of it is doom and gloom. When you type it in to Google, the first thing that comes up is Macmillan Cancer Care!

Any help would be appreciated

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9 Replies

  • Posted

    Hi, I have heard of a lot of people having Chemo for Lupus. Is this Methotrexate a Chemo meds maybe?
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    • Posted

      It is a chemo med but there is a stream on here about it in treatment of psoariatic arthritis but not sure about SLE? Just concerned because the many side effects of it are nausea, fatigue, joint pains, fatigue, rash, ulcers and hair loss - all which I have already and then can lead to kidney and liver problems - which I don't have and don't want! So how do I know if I am getting worse because of the SLE, or if it is just the methotrexate? I know lupus is a really hard condition to treat, and I am not very patient because I don't like the way I am right now. Had a really bad week with the tiredness and swelling in my hands and feet - so probably not thinking straight. Anyone who has had experience of it , if you get in touch it will help. Cheers
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  • Posted

    Methotrexate is an old cancer drug that apparently work on range and

    Lupus I take it have done for around ten years does it work? I don't know

    It may be under threat for lupus it's an of label drug .

    I believe there are newer better drugs available why don't we get those

    Could it it be cost ?

    Anyway hope you feel better soon

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  • Posted

    Hi hope ur feeling alot better now ... The medication ur on about my mum is on that but she doesnt have lups she got arthritis n shes got loads side effcts to it the main one is gained weight n dry mouth all the time but then it helps her pain too ..

    Im no hydroxoclorquine myself for my lupus n it does help alot with my lupus pain n flare ups my skin was going really bad because of lupus flares n thats helping have u been given azerthyoprine at all for ur lupus im on that too

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    • Posted

      Hey! So four months or so down the line, the mtx tablets have just made me feel awful, but at least the rash has settled. I feel sick most of the day and it wears me out. I have been given tablets for sickness but they put me to sleep, so not much good either! Pain and stiffness not changed.They have agreed that I may not have been absorbing the mtx, that's why it hasn't worked very well and I have reacted to it badly, so they've given me the injections as the side effects as supposed to be less. Had my first one last week and it floored me for four days. Still, I have to give it time to get used to it and then I self administer it. Fingers crossed. How long before they tried you on azathioprine? Is your hydroyxchloroquine plaquenil or hydroxychloroquine sulphate, been given the last one in my last prescription and it dissolves on my tongue and tastes awful, doesn't seem to be working as well, not sure why? Cheers
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    • Posted

      my face got really bad to i was always tired lathargic n unable to move ... I was dignosed in 2011 and im on plaquenil since then but the few month after taking it i got worse my face arm had rash n i was suffering my dermatologist suggested that i use a high level sun block at all time even winter n that was a god send advice coz it really worked for me now my face always clear n i use sun block high factor everday ... In 2012 the joint pain would go so thy added the azerthyopine first at 100 mg now im on 200mg a day that took a while but helps alot too ... But because i have some other medical problems too as im a amputee so i take tramadol for pain relief maybe thats wats helping my pain somtimes it gets unbareable n somtimes calms down ... Maybe ask ur rematolgist about azethyoprine hope ur pain gets better its just so hard i understand u completly 😊
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    • Posted

      Hey. I thought I had it bad, sorry to hear about your problems. I saw Dermy too, they tested me for allergies to see if it was causing the rash on my body and face - nothing. Gonna try with these injections and see how I go for a few months. I saw something that said it is harder to pretend you are ok, so you don't make other people uncomfortable , than it is to admit you feel awful. So I have decided to fess up and just tell people how crap I really feel, instead of pretending I am ok. That has helped alot. Sometimes I wake up and can't feel or move my fingers and it scares me s**tless. Lucky that I have support of family and friends, and can moan on here too! Take it easy and thanks for replying, hope things look up for you smile

       

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  • Posted

    Hi again I noticed that you guys who are taking methotrexate don't next ion folic acid you should be prescribed one tablet per day it helps stop the side effects I have no side effects hope this helps
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    • Posted

      Hey. Thanks. I researched it before I went near it, I have folic acid every day apart from the day I have the mtx. Think just have to face up to the fact that some drugs work for some people, some work for others and it needs alot of patience / tolerance and hope until they find the right one for you. Fingers crossed!
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