New to methotrexate and struggling with the side effects
Posted , 4 users are following.
Hello, I started on methotrexate 5 weeks ago for SLE. I've been struggling with the nausea and tried taking my meds at bedtime last night instead of the morning but had the most horrific nightmares in between being sick 😔 It was really disturbing. Does anyone else suffer from this? I've also been suffering abnormal period bleeding for over two weeks when I'm usually like clockwork all of these are new symptoms to me so not sure if it's medication related?! Xx
0 likes, 5 replies
1_hand_works kelly_73703
Posted
Hi. So sorry you are suffering. I was started on MTX for SLE at the beginning of my treatment. Firstly, it does take a while for your body to get used to it. You should be taking folic acid 5mg, every day other than your MTX day. If not, ask your rheumy to do this, as it is supposed to help. If it is working for you, in that your joints are much better, your rash has gone down and your fatigue is less etc, than you can ask rheumy to give you cyclizine or another anti emetic to settle your nausea / vomiting. I was on MTX tablets to start with and then they let me go onto injections eventually, which allegedly bypassed the GI (nausea/vomiting/diarrheoa) side effects. In the end, I decided that the benefits of taking the MTX were outweighed by the vomiting/nausea/diarrhoea etc. side effects and I got them to agree to change my regime to what I am on now (azathioprine). The MTX made me so sick, even with the anti emetics, that I wasn't getting any benefit from the drug at all. I have heard that it really works for some people, so it is worth perservering with if you are getting better. The injections (if they offer them) are easier to do, even if your hands don't grip that well, but they didn't work for me.
Hopefully you are getting your bloods checked regularly too, it is important to make sure it doesn't affect your liver function. I gave it a good 6 months, before I asked to be reviewed, if you are really suffering, you could ask them to reduce the dose and slowly build it up to therapeutic level once you get used to it. Good luck with it.
I have to say, patience is essential. It has been nearly 5 years for me now since diagnosis, I think I just about have it manageable but I have had to give up work and alot of my social life. I still get flares, but they can be managed by course of steroids, I wouldn't wish this disease on anyone, but life has to go on and in the end, you do learn to live with this - honest!
kelly_73703 1_hand_works
Posted
Thank you for your reply 1 hand works. I'm taking the folic acid which definitely helps ease the symptoms so I do get a few days symptom free and my bloods are checked two weekly. I've had SLE for 9 years and it's managed fairly well with plaquenil. I tried azathioprine for a bad flare up a few years ago but couldn't keep any food down so they stopped it. This is my worst flare up for a while so I'm hoping the methotrexate will help soon. The tiredness on it is unbelievable I've never wanted to sleep so much. Maybe the injection will be a better option for me when it all settles 😊 Managing SLE is never easy is it? I've managed to maintain a fairly good balance up until starting the MTX so hopefully that will return!
I'm finding the bleeding very odd. Will mention it to my consultant I've been very lucky to have a great medical team.
Take Care 😊
1_hand_works kelly_73703
Posted
Hi. Bizarre isn't it? I was started on hydroxychloroquine (plaquenil I think) and it didn't do much, so then they added steroid injections, and then added the MTX when these didn't work. Eventually they give me azathioprine, but they obviously did it a different way with you. I can't help you with the bleeding as I don't have that anymore, thankfully. I couldn't cope with the MTX tiredness either, but then I was so dizzy on them, even when I lay down, I felt sick. I hope it settles for you. Good luck
Joyce_wine kelly_73703
Posted
steve195705 kelly_73703
Posted
Regarding the nausea, sickness and nightmares - I'm afraid I have not had those side effects. I'm taking it by injection, which I think is reported to reduce side effects. I have read that there have been reports of nose bleeds, which I was already prone to getting. Since starting the treatment I have noticed that these bleeds are more difficult to stop. Don't know if that's relevant, but maybe that relates to your experience of heavier bleeding. I hope it settles down and you are doing well soon.