Methotrexate...Anyone got any experience with it?

Hi all,

I have asymptomatic PBC (positive AMA test) and a month ago the Rheumatolgist confirmed what I had suspected, I have Fibromyalgia. In my follow up today he also dropped the bombshell that I have Rheumatoid Arthritis and has put me on Methotrexate. Is anyone else taking this? If so, what's your experience with it? The possible side effects have frightened me somewhat, even given the benefit if they work.

A year ago I was working as a carer, pushing a wheelchair around, just finishing my degree at Uni and my head the fibro has my head so foggy that I can barely concentrate to read, I can barely walk some days, and I just don't feel like me any more. The DLA won't listen to me, I dont think my family understand how shit I feel. And the fatigue? My partner is great to his credit but the rest? This whole autoimmune thing is really getting on top of me!

Sorry, what started as a question has become a bit of a rant, I think I needed it off my chest!

Thanks

Sian x

12 Replies

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  • Sometimes we all need a good rant it seems to release the pressure a bit, so don't be sorry!! I have my first appt with my Rhuematologist in Jan, but I too have a feeling he is going to say fibro! But my worry is if it turns out to be RA the drugs they give you, as me and medication never go well together I am allergic to so many meds! I hate reading the side effects they scare the crap out of me!

  • Thanks for making me feel better for needing to rant and good luck with the Rheumatologist, if you are anything like me with the fibro make a list of things to talk to him about. First time I had loads of questions, but the 'fibro fog' ensured I forget most of them!

    xx

  • Yes i was put on methotrexate earlier this year twice a week as a last ditch effort to control my symptoms and disease as my latest biopsy shows 50% of my liver now has cirhosis.

    it made me so nausious and dizzy for a few days then it would settle. After 4 weeks i stopped getting nausia and all was going well but my frequent blood test showed no improvement. keeping in mind the POSSIBLE side effects are not pretty. i have a lung disease called B.O.O.P( also auto immune) that is secondary to my PBC and that is a form of pnumonia..hense my concern about trying this drug as it can cause pnumonia and inflamation in the lungs. Sure enough it wasnt long before i started to feel very unwell. Methotrexate lowers your immune system and you must be very careful. I ended up in hospital with pnumonia and the influenza at the same time and i thought i was gonna die.The hospital staff in emergancy were staring at my blood test and me with confusion.i had to cease the methotrexate immeadiately as you will not get rid of the pnumonia while still on the drug. 4 weeks later i was back to my old self and when my gastro dr suggested we trial it one more time - i said NO!!!

    everyone reacts differently so you may not have any problems. But be aware of your body and its reactions to this drug.

  • Thank you for the advice, I think one of the (possible) side effects that worries me most is the idea of liver damage given the PBC. My Rheumatologist is of the opinion that although I have tested positive for AMA (3 times) , as I am still asymptomatic and my LFT is still pretty normal, that the PBC could still be a false positive. But what if the methotrexate tips the balance and causes liver problem? I know these worries are all what ifs, but thats the way my head works unfortunately lol.

    You mentioned being careful about infection with a lowered immune system, how careful are we talking here? For example, if I'm babysitting my neice and she has a cold, is that safe? I don't want to sound like a sissy lol, but no-one tells you these things:)

    x

  • well yes it depends on your immune system i guess you have to judge it and take care where ever possible

  • Hi Snoozy I am just about to have a scan to either diagnose or rule out boop. Can I ask what your symptoms were and how long before you were diagnosed with it? Thanks. Hope you are keeping well. Bfn.

  • Hi well i was sick with a flu that never seemed to end. i coughed and coughed constantly while i was awake. not when i was asleep. but on getting up during night i could barely take a breath, i could only take small shallow breaths. when i lay down i could dear a crackling sound when i breathed in and out. i was always breathless and short flights of stairs left me panting like i was 100 not 37 at the time. I could not talk and wallk at the same time. i could not talk without coughing . it went on for 4 months

    i felt like i waas going to have a heart attack and die.

    my scans showed up the boop easily and 3 months on high dose prednisone fixed me....for a while. then it came back with avengence and that was scary. the specialist thought he might have got it wrong so they booked me in for a lung biopsy to rule out cancer. by the time i was in hospital my left lung had collapsed and it was a very long n slow recovery. 7 days in hospital and 4 weeks off work.it was a mix of many things but not one and only one thing. it was mostly BOOP but also a bit of sarcoidosis and abit of environmental phnumonia and one other i cant recall.

    Prednisone is the best treatment for me. but not short term. i need to start on 50mg a day for 10 -14 days then 30mg then 25,20,10 and now im continually on 5 mgs daily as a way to keep it at bay. it has a tendency to come back and get you when your down n out health wise. so if its what you have, please try to keep good heaalth and dont stop the prednisone early.

    they said that it was rare but one other woman had a case of PBC and BOOP

  • I have been on methotrexate for 4 weeks mainly for arthralgia and my joints feel fantastic .

  • That's really positive to hear, have you had many side effects?

  • My daughter was on methotrexate for psoriasis She had to have special blood tests each time she saw the consultant. She took the tablets on a Sunday dinner time so that I could keep my eye on her. Although she is a VERY LARGE Person by tea time she would be fast asleep. I was never happy with her on the tablets and was quite relieved when due to them causing liver damage she was taken off them. Thank God after a few months the Liver improved ruling out the need for a biopsy.

  • Hi Reni

    my daughter is on 10mg once a week, shes 15 and has been on it since she was nine, she has very aggressive psoriatic arthritis, she also injects herself twice a week with etenercept, she takes the methotrexate just before bed because it can make you feel sick, are you on the tablets or injections? she was on the injections for a time but got psychological side effects, (hyperventilating if she saw the needle or wouldn't go near anything yellow, those kinds of things) but shes fine on the tablets, obviously youll get regular blood tests which will show if it does have an affect on your liver, this was one of my main concerns when I was diagnosed because if pbc is hereditary I was thinking her liver isn't going to have much hope but her bloods have always been ok in that aspect.

    obviously you need to keep away from anyone with coughs and colds, chickenpox, etc because your immune system is actually being subdued by the methotrexate so that it cant attack your joints, but try it and see if it works, if it doesn't then come off it but remember it takes a while to get into your system. Good luck hon. xx

  • I was on methotrexate tablets, but it gave me some digestive problems and I changed to Sulfasalazine. This doesn't work as well as the metho so I am being changed AGAIN to methotrexate injections, so I have the benefits of it working but bypassing my digestive system :) Other than the stomach ussues, it was fabulous! I have psoriatic arthritis, by the way x

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