Hi it's been quite a while since I've been on here so to cut a long story short here we go lol I've been diagnosed since jan 2013 was put on lefludomide until nov 13 when I was phoned by my rheumy & told to stop because something showedup in my bloods that weekend I was taken into hospital with gallstones which turned into severe pancreatitis & they also found that my left kidney was blocked! needless to say I havnt been on anything for my ra cause nobody really knew what effect it was having on my insides! Seen my rheumy last week & they are going to start me on methotrexate I'm glad about this as I've started getting flares in wrists etc & feeling awful in general. However I'm rather anxious about starting this cause I've not heard many good things about it, I think I'm just after some reassurance going to see rheumy nurse today to get started on them so will speak to her as well. Hope this post hadn't bored anyone lol but it's been a tough year for myself & my family thanks for listening gentle hugs Michelle xxx

11 Replies

  • I started MTX after putting it off for 6 months because I was so scared. It was silly, really because it was okay regarding side effects such as nausea etc. I had nothing like that. The only problem I've had was hair thinning quite a lot so my dose has been dropped down to 7.5. The hair has stopped falling out but the joints are getting worse again. I think I was unlucky with the hair fall because lots of people say they don't have that problem. I'm about to start Humira now. Good luck with the MTX. Clemmie

  • Thanks clemmie xxx

  • Oh Michelle, you have been through it haven't you?.....a really tough year. I can totally understand how poorly you were with severe pancreatitis. My h had this in 1991 & it was frightening as at one point as we were told if he didn't respond within 2 days we would lose him. Happily & thankfully he did but continued with problems & needed the mass asperating many times for some time after recovery. His next op will be gallbladder removal!

    I've taken methotrexate for 5 years now & my RD is controlled. It's a very good med for many but, as will all drugs, we all react differently & the negatives obviously come to the fore. I often wish a full report could be done to show just how many have benefited v those who have failed on it. It's natural for those who have fears of something to research it but it's not always helpful as people who struggle are the ones who damn it. True, it's a chemo drug but the doses for RD are far lower than for those who are suffering cancer. From my perspective I would say try it, you're well monitored whilst taking it, I have LFT's taken each month & rarely have anything but positive results.

    I hope you receive more replies so you can make an informed decision, the right one for you. Let us know how you get on once you start whichever treatment & I do hope you start to feel benefit quickly. Have you asked if you could have either a short course of oral steroids or an injection to get you through the flare whilst you wait for your meds to work? You can only ask!

  • Will ask about steroids when I'm in there thanks for your reply xx

  • Hi Michelle, boy what ride you've been on! I'm new to this RA life and can't offer a lot in experience. Like you, and most others, I was (still am) nervous/anxious about meds and side effects but figure that side effects will hopefully be less troublesome than uncontrolled RA. I took my first MTX dose last week (10mg) and will take my next one tonight. I did alright last week with a little gastric effect re bowels (Oh it's come to bowel talk so early in this journey... Rats!!!) but no nausea, tummy cramps or anything else. This could be because it's only been one dose and the MTX is not present enough in my system or I may be one of the lucky ones who can tolerate MTX reasonably we'll or it could be because I've take the precaution of eating a bowl of porridge with fresh ginger and a sprinkling of slippery elm in it to line my stomach 15-20 mins before the med..... Does this work - who knows but so long as it allows the part of me that needs to find some control within this new life to be content then it's doing some good!

    I have to say I agree with Nomoreheels that a more balanced reporting of med reaction would be good but until then ???

    Hope all goes well


  • Hi flower, i am on mtx been on it since June this year, i am having my bloods taken every 2 weeks at the moment, back at hospital next Thursday, i think i am lucky i have had a small side effect like i am so tired, and burses turn up for no reason, but part from that nothing, o yes i and a bit dopey but my other half says nothing new their, lol xx

  • I was on MTX for 7 years. Tablets at first, but as dose was increased I got nausea and blackouts, so went on to injections. No problems. I'd still be on it today, but had to stop when I needed chemotherapy. I'm waiting to hear what drug my rheumy is going to give me if I can't go back on MTX. Currently on Leflunomide 20mg and Prednisolone 40mg. All the best to you. xx

  • Thanks everyone for your replies I'm starting on 15 mg a week & hopefully that should do the trick, had steroid injection in bottom to help with pain just now & I'm also starting a tablet for gout!! Michelle xx

  • You poor thing, gout as well as RD, that must be rotten Michelle. I hope the steroid injection does it's job & the pain eases - I forgot to mention that it could be possibly up to 12 weeks for MTX to work, the reason for mentioning asking about steroids. Good luck.

  • Hi Michelle. Sorry you've had such a lousy time. I know many people with RD and other autoimmune problems who do brilliantly with MTX and it is generally a well tolerated DMARD - more so than Leflunomide from what I've read on here.

    Unfortunately I have had severe tolerance issues with three DMARDs over 3.5 years and am now off all drugs - last dose of injectable MTX was three months ago now. But it was extremely effective and I'm very sad that my body just couldn't tolerate it. I do know I'm unusually allergic and have been all my life. I also have some very large gallstones and although Leflunomide has been mentioned as the next DMARD to try me on my GP isn't keen on this partly for this reason.

    Do you mind me asking whether your RD came creeping back and if so after how long did you really start to suffer from it? Or perhaps it never remitted with the Leflunomide?

    Twitchy x

  • Hi twitchy it's started creeping slowly the last couple of months, doc wasn't keen on me having anything for ra until I got my gallbladder out which I had done in June, just have a couple more things to sort out now & I never really had any problems with lefludomide until November Michelle xx

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