Another MTX question

Was put on MTX in Sept 2014, within 3 months I had a cough, after suffering with cough for 2 months was taken off MTX and not given anything else, had lung function tests and xrays, all mainly clear. In March 2015 had a big flare up (no meds at all) and it damaged my kneecap so now I have to use crutches to walk. End of march I was given leflunomide, took about 5/6 weeks to get into system and suffered with flare-ups in the meantime. The Lef didnt work as well as the MTX so in about July was given hydroxychloroquine but that disagreed with me severely and stopped it after a couple of weeks.

Because I was still getting regular flare-ups I asked about going back onto MTX to see if it was better second time around. I started the MTX 5 weeks ago and the cough is back, keeping me awake at night, its a dry tickly cough, really annoying. Last time on MTX I was told to take folic acid once a week day before MTX, this time I take it everyday apart from MTX day.

My question is: is there anything else I can try that might work for me? I cant do injections

8 Replies

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  • Why can't you do injections? They are much better re side effects. With MTX tablets I got mouth ulcers that made me cough non-stop and within 10 days of switching to injections they were gone.

    But there are several other drugs you could try, so do ask your rheumy. Lefluomide, sulphasalazine and so on.

  • Been on leflunomide, hydroxychloquine and neither suited, cant do sulphasalazine due to heart problems.

    I am scared of needles and the blood tests are bad enough, I get myself into a right state before I go. Just the thought of having injections, let alone injecting myself, gets me into a cold sweat. :(

  • Could you not get over your thing for needles Lynn, or even have someone administer them for you? They really are a sinch, just a pen, you press a button & that's it done. I'd never injected myself before & it's now been 5 years (I had a year on tablets) & I've had far fewer side effects, it's possible you could even reduce the dose as less of the med is lost injecting.

  • Dont think I can nomoreheels, just the thought sends me into panic mode, only side effect Ive had on MTX is the cough, day and night,

    Think I am wanting someone to tell me there is a magic drug that sorts everything out and makes me normal again. I am so fed up of not being able to do anything, go anywhere, just feel normal :(

    Sorry ignore me.

  • Oh that there was!! I think it'd be top of everyone's wish list! It's ok, if you have a real fear it's not easy & no amount of therapy will overcome it. When I was going through IVF the district nurse had to come & do mine but the thought of all that bother & no side effects of note convinced me to go for it with MTX & to be honest now I've done it for so long I wonder what all the fuss was about.

    If it helps talk, to us or whoever's trustworthy, it's better than storing it up. ;)

  • I can't describe how terrified I was of needles. Long story, but as a small child I was very ill and a nurse came every morning to give me an injection - and everyone was on their way to work/school so rushed so she used to grab me as I tried to hide and would slap me & she & a family member would hold me down while I screamed.....this went on every day for over a year and I became totally phobic about needles. The thought of injecting myself made me vomit - literally.

    Anyway, needs must because I too was coughing and not able to eat properly, etc. With the help of the nurse and several failed attempts I finally managed. And it's absolutely fine! Honest! I don't even think about it now at all.

    And much tho' we all wish there was a magic drug that comes in the form of a tasty chocolate, there isn't. But injectable MTX has been pretty close for me and I'm now in remission and feel 95% normal.

    So you'll be surprised what you can manage, so do think about it?

  • We all know there is no magic drug but the biologics can be life changing. They can be either infusion (in hospital) or self inject (at home). It may be worth having a chat with your GP or rheumy team as help may be available to overcome your fear of needles if it is advised to go down that route.

    I could not tolerate DMARDS very well or they did not work but the biologics have made life better for me for a number of years. As with DMARDs it can take some time to find the right one to suit you.

    If you have a look on the NRAS website they have details of the drugs that can be offered. Farm

  • Hi I am due to start biologics after knee replacement surgery on 28jan . I am 60 An worried re side effects . I have had RA over twenty years an been on all the drugs but none work now ... I go between being worried an excited that my life might change for the better ...any info in how your doing would be welcome ....

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