starting on MTX & Imuran

starting on MTX & Imuran

Well after a long journey, 2 1/2 years, I have finally got my liver to a level where it can tolerate MTX & Imuran. I go on Monday to get the scripts and instructions, but I can tell you I am not looking forward to MTX as my sister had a really bad time on it and I have multiple chemical sensitivities so I am pretty much freaked out. What worries me is how I will cope working full time and feeling so bad on this stuff and I can't cut back my days as I would be homeless. My other problem is is that I have also fractured a bone in my ankle a week ago, which I am told will take a long time to heal, so i am slightly worried how they will affect the healing process. does anyone have any experience with having a fracture and being on these drugs?

16 Replies

  • I'm afraid I have no experience of either but wanted to say I just love the picture

  • Hahah yes cute isn't it.

  • Love your picture , I was on methotrexate for 14 months and since coming off it I realise it was helping with RD but I could not tolerate the side effects , been off it for 5 weeks and the pains are back and walking a problem now, have started leflunamide and hope that kicks in soon. I hope your meds work for you and you are able to cope with any side effects, we are all different in what we can tolerate and you might be one of the lucky ones, I do hope so, take care

  • I have been on hydroxy for almost a year but I am not sure it has done anything for me. Been on low dose steroids for a few months which has given a bit of relief. I tried leflunamide but had peripheral neuropathy so had to come off it after a couple of months. I have an allergy to sulfa drugs and most antibiotics so I am slightly freaked by taking immunosupressive drugs. I don't hold out much hope of a good experience with these but I will give them a go.

    Hope the Leflunamide works for you it is supposed to be good for those who can tolerate it.

  • I don't have any experience of fractures & MTX but it's normal if having surgery to withdraw it for an op as it can slow down the healing process. So how quickly it will heal I suppose depends on when you actually start taking it, they may want you to delay it if they're aware of your fracture to give your ankle a better chance of healing fully otherwise it could become a weak point.

    MTX has been the one that got me controlled. Been taking it 5 years now & hope it helps you as much as it has me. I'm just a little more tired & off my food the day after injecting & compared to how how I am without it one iffy day is a small price to pay!

    Gorgeous pic by the way!

  • Thanks for that. I am going in realistically that I will have every known side effect and the rare ones too, I usually do I am also worried about the stomach stuff as I already have reflux and it will be in tablet form not injections. I have not wanted to take it at all for those reasons.

  • We differ there! I always convince myself I won't have any!

    I always took the tablets with food & split the dose over a day so for 15mg I took 2 with breakfast, 2 with lunch & 2 with dinner. It helped me but I did have more side effects on tablets though only took 5mg folic acid the day before & the day after. Had my Consultant been one who suggests folic acid more often I think I would have tolerated them better. Ask if you can be directed to take them each day except MTX day if you're intolerant, I've been loads better since doing that. Or push for injections!!!

  • I may push for injections as I have real issues with my reflux and if I add sleeplessness from reflux and constant nausea and working full time I will crash and burn big time. I just don;t want to take it really and I am being realistic, I know that I usually have the rare or unusual side effects from drugs so I will be expecting it as will my drs. Oh well.

  • I completely understand your fears but I have to say that MTX was the dmard I have tolerated best - although I did have to stop taking it eventually - even in injectable form - but it really has kicked my RA into the long grass.

    Re peripheral neuropathy, as you may know I've suffered horribly from this for over a year now. Both my GPs did nothing about referring me with this symptom for a year, because they were convinced it was the outcome of MTX. However I observed that it went away with the higher doses of MTX (which I couldn't hack and nor could my liver) and only became severe when I dropped to a lower dose and then came off it. I had three months back on injections and again the neuropathy went away but came back when I stopped once more due to other adverse side effects.

    My rheumy wants me to try Leflunomide but GP doesn't want to prescribe it because he feels it may make the PN worse. Personally I'm not sure it could be much worse but I'm not keen to find out either!! I really wish I could tolerate MTX because I think it is a brilliant drug especially by injection. However I also understand your feeling of apprehension about it and other drugs. My rheumy always advises me to keep an open mind about side effects. I do genuinely try and have managed okay with Amitriptyline over the years and also with analgesics and anti inflammatories. But when you've had the kind of severe side effects that we've both had it is very hard to keep a fully open mind I know!

  • I know what you mean, PN was horrid and the leg swelling made it very uncomfortable sitting at a desk all day. I hope it doesn't have that affect on you or make it worse.

    I have an open mind, I am just realistic as I have had so many bad reactions and the reason my liver is i bad shape is because of adverse reaction to a common antibiotic . I can't take anything with codeine, morphine based or NSAIDS I am very very limited in inflammation and pain relief. I am just a ridiculously difficult case! hahahah why it has taken 2 1/2 years to get me to a stage where I can try MTX and imuran.

  • Me too. Do your doctors make you feel as if it is your fault somehow for having a picky body? Last time I saw him my rheumy went through all the eleven different drugs I've tried in the past three years - two of which have wound me up in hospital. He said in a slightly exasperated/ sarcastic voice "you really don't do drugs very well do you?". The other rheumatology professor made it sound so much less critical when he commented "you have obviously always struggled with allergies and finding the right drugs for you is always going to be harder as a consequence" - so much kinder somehow?

    And yes my legs and feet are very swollen with the PN. The doctors don't notice because ive got such skinny ankles and they never check - but I do because I'm struggling to get my winter boots on as they are so stupidly tight. I've just been on a long haul flight and it was torture. I had to wear my slippers which I had packed in my hand luggage to get off the plane. Already dreading the return journey. I wish there was a drug I could blame this time!

    Good luck with MTX. X

  • I have been very lucky so far, they learn very quickly I am telling them the truth about allergies and intolerance, they learn when things start going wrong very fast. I am going to see an immunologist this month so maybe I will get some answers on that front too. Some drs have been condescending but I pretty much put them in their place pretty smartly, I know my body very well they have usually had 10 minutes. I take the attitude that we are consumers and like anything else I would purchase I expect the product to be reasonable, functioning and useable.

    I have the same swelling problem and found that the compression stockings helped even though I still swelled, it went down quite quickly. I did a lot of flying in June - Oz to US and all over US then back home and they really helped.

  • Thanks I must try and find some before we fly home to UK a week on Monday. I know my ankles have been swelling up for ages now because I get a deep groove where the elastic of my socks is which I never used to as they aren't tight along with little bright red follicular spots.

    My GPs are very wary about what they prescribe me now and physio who sits in on my rheumy appointments has seen my face covered in welts and swollen and also in a hospital bed after one drug so she has verrified my tales of woe. Perhaps in Oz you pay for your treatment through insurance but with the NHS it is harder to approach these doctors in as business like a way as you describe - although I do try! ;-)

  • I hope you find some they work reasonably well. I still swell but it goes down more quickly.

    We have medicare which is a bit like NHS, but I got sick of registrars who would spend the whole appt asking my history and then telling me I had fibro or that I needed to exercise. Really!!!! So i see my rheumy privately now at least I know he knows what he is doing to a degree. trial and error is all they have really. Good luck and I hope you find something that works. I have to try the MTX and Imuran and if it doesn't agree then my rheumy will consider something else. Ho hum shame it is my body that has to go through it! hahahah

  • As I've said injectable MTX was the best drug of all for my RD symptoms. I would have put up with 24 hours a week with tummy troubles at both ends but the thing that defeated me was two years of a foul taste 24/7. Eventually it just became too intolerable. Hoping it works brilliantly for you without too severe side effects. X

  • well I suppose I will find out soon, depending on if I can take them with a fracture. I will find out this morning.

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