Infusion Treatment with Methotrexate
I began infusion treatment with Aria Simponi in Jan 2023 and got some results so in June I agreed to give methotrexate a try as well. I immediately saw an improvement and didn’t experience bad side effects. About 3 months into this regime I started getting increased side effects after taking my weekly methotrexate dose. Severe nausea, malaise, no energy and difficulty regulating my body temperature. I started splitting my dose to half in the am and half in the pm which helps some. I also increased my hydration from 1 gal to 2 gal per day which also helped. Does anyone have any other tips, tricks or suggestions for tolerating the methotrexate meds better? I still have 2-3 bad days per week, I’d like to have less if possible. Thanks!
Does your doctor also have you on folate? MTX depletes the body's levels of folates, so you have to take it as a supplement. You can also buy it OTC about anywhere.
yes I do take folic acid daily. Forgot to mention that. Thank you! Since the answer seems not to be lack of a folic acid supplement, then it may simply be that your body cannot tolerate the MTX. This was my experience, as well. I was on Methotrexate therapy for a couple of years before my rheumatologist finally had to withdraw it due to the same reactions you've outlined above, in addition to my picking up every opportunistic infection that came along. There are people who simply cannot tolerate the side effects, and need to be moved on to something like a biologic, enbrel or humira. Be your own best advocate, and if you feel something's not working for you, demand a change.
Hi
, welcome to the community and thank you for reaching out about this. Sorry to hear that you're struggling with these side effects. It's rotten that we have to deal with these on top of the PsA symptoms! The folic acid is really important, so I'm glad to read that you're taking that alongside the methotrexate.
I've been taking methotrexate for almost six years now and I did struggle with some nausea at the start, and I still regularly feel quite groggy for around 36 hours after my dose. I'm glad that upping your water intake and splitting your dose has helped a bit. For the nausea, what helped me personally was firstly taking it with my evening meal, so that I was asleep for the first stretch of nausea. I'm not sure whether that would make a difference for you if you're suffering for multiple days after your dose. The other things that helped were ginger products (ginger biscuits, non-alcoholic ginger beer, etc) and ice lollies - I'm in the UK and not sure what they're called in the rest of the world, but I'm talking about flavoured ice on a stick.
Have you had a chance to discuss this with your doctor yet? I ask because, based on what other community members have shared, there are a few things they may be able to do to help. Some people find the side effects are more manageable with the methotrexate injections - if you're taking the tablets that might be something to consider. Your doctor may also be able to prescribe anti-sickness medication, or they may decide that a different treatment is more suitable for you.
I hope you'll get some more input from others here, and that there's a way for you to get the relief you deserve with as few side effects as possible! Please keep us updated if you can, and feel free to reach out anytime you need support or have questions. Warmest wishes, -Catherine, Community Moderator, I was on methotrexate and Cimzia when I began Simponi Aria in August. I stopped the Cimzia in July but have continued the methotrexate.
I do better with methotrexate injections but there is a shortage of the injectable form in my area.
Once I started on Simponi Aria, I was also struggling with methotrexate. I let my rheumatologist know and he dropped my dose down from 8 to 5 pills. I refused to take the dose he wanted, which was 10 pills a week. I had been on it before and felt depressed with 10 pills.
You could ask your rheumatologist if you can split your dose of methotrexate over 24 hours. When I was taking 8, my rheumatologist allowed me to split the dose. Either way, you might want to let your rheumatologist know that you're struggling. Its no fun and I wish you the best., oops - I see you are splitting the dose. I haven't had enough coffee this morning so missed that!
