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Stressing about medication!

Looking for a bit of encouragement, last night a had a bit of an anxiety attack as I’m really anxious about starting new medication. I recently took a severe and very scary allergic reaction to Sulfasalazine and my rheumatologist wants to move me onto methotrexate instead. Of course I made the stupid mistake of reading about the side affects and other patients’ horror stories on google and I’m freaking out about it especially because I have already had an allergic reaction to medication and I don’t want that to happen again!

I think what makes it worse is that I’ve actually been feeling really well recently! I’m on NSAIDS and recently had a steroid injection but obviously I can’t stay on steroids forever and my rheumatologist said my inflammation was particularly bad at my last MRI scan so we need to get it under control before the steroid wears off. I think I’m just really nervous of putting more medication in my body after a bad experience. Does anyone have any positive experiences of taking methotrexate or have any supportive advice?
Thanks!

Comments

  • Mike1Mike1 Posts: 616 ✭✭✭
    edited 31. Jul 2020, 09:39

    I have OA not RA so a different treatment regime, however what I would say is that everyone is different and what works for one person may not work for someone else. I went through trying the whole gamut of meds available for OA, all of which either did nothing for me or gave me horrible side effects. There is nothing left for me to try so am left with Morphine. I will let those with RA who may have experience of the meds specific for you but I would not be over-anxious, Google is a great thing but it is easy to get scared sometimes.

  • LilymaryLilymary Posts: 266 ✭✭✭

    Reading other people's posts on this subject, I echo Mike's comments. There is a wide range of reactions reported, and it varies from one person to another. I get that the fact that you had a bad reaction to one new drug might make you wary of trying another one, but it's the same with drugs, not all of them will have a bad side effect like that last one did.

    If you googled the effects of paracetamol you would probably panic about those too, the internet is both a blessing and a curse.

    You're not really going to know until you've tried it, although I can understand your reluctance if you're currently going through a "good" spell, it might seem a shame to risk making things worse. But don't rule out the possibility it will might make you better. I would suggest you talk this through with your GP and /or rheumatologist, as they will have seen others going through the same.

  • KazandNooKazandNoo Posts: 87
    edited 31. Jul 2020, 13:03
    Your story struck a chord with me as I had almost exactly the same experience as you Lynne84. I had a really bad experience with sulfasalazine (DRESS) and it made me very wary of other drugs with similar side effects. Let us know how you get on with the mtx,the tablets didn't really agree with me but I know of 2 other people in my small village who take it with minimal discomfort. I'm prepared to try the mtx pens as some people find these are ok. Let's know how you get on.
  • Thanks for your suggestions. You’re right, I just need to try it see how I get on before getting too worked up. I’m lucky that I do have an amazing rheumatology team that have been very supportive and understanding throughout my journey, so I should put the trust in them that they are making the right decisions for my health. I’m just nervous about things going downhill after finally feeling like I’m getting some of my life back! I’ll keep you posted on how i get on!
  • Btw,don't be too hard on yourself about being worried, it's only natural after a bad experience. See how you go,and don't hesitate to contact your rheumatology team about any concerns 😘
  • Hey
    I also had a bad reaction to sulphasalazine and my doctor told me that she'd seen quite a lot of people have reactions to it. I've been on quite a few other meds though and none of the others have caused me too many issues other than stomach problems, but I have a lot of problems with my stomach anyway so I think that's probably just me lol. It's hard not to Google your medication (I'm terrible for it), but you often tend to find that people who have positive experiences with them rarely bother righting reviews etc.
    Methotrexate didn't work for me, but I know quite a lot of people that have been on it for a long time and it has completely changed their lives for the better.
    It's completely understandable to feel anxious about a new medication and don't be afraid to talk to your rheumy nurse or doctor if you have any concerns at all.
    I really hope the methotrexate works for you and things start to get better for you soon.
    Please let us know how you get on with it.
    Take care
    Amy x
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