Hi
I have been injecting Methotrexate since November, Hydroxychloroquine added in January as well as my dose of Methotrexate changing from 15 to 20mg. I am nauseated all the time and have no appetite. Feeling really bad today as well as I cannot walk with my hip. I have to see my consultant on Monday I am thinking of asking her to take me off the Methotrexate as I have no quality of life on it. Has anyone else experience this.
MTX made me really unwell I was on it for 6 months made me nauseous and felt like a Zombie x I am now on Sulphalazerine and Hydrox I seem to be able to cope on this and not such bad side affects x Hope you feel better soon xxx
thank you very much for your reply - I feel ill all the time and that is 3 months I am hoping I can change to some other meds.
Hi there
Nausea is common when taking methotrexate, even via injection. Please do speak to your consultant about how it makes you feel, your quality of life is so important and there are many other options of medication out there to try.
Best wishes
Kim
Has your nausea been worse since adding the HCQ? It's just that nausea is a common side effect not only of MTX but also HCQ & thinking it could be the two together making your nausea worse rather than being sure it's your MTX.
Seems odd to increase your MTX at the same time as adding HCQ too. It would have made more sense to keep you at 15mg & add HCQ then see how you respond, if not well enough then depending on what dose HCQ you started on double the dose (400mg daily max) or increase your MTX. Your Rheumy reducing your dose back down to 15mg & reducing your HCQ to 200mg if you started on max dose may help. Unfortunately you don't have the option of increasing your folic acid as you're on max dose.
I had nausea on HCQ when I first started taking it but is soon passed. When I had it again (& vomiting) on sulfasalazine GP prescribed prochlorperazine. Another option possibly?
It really all depends on how you're responding re disease activity if the options are practicable. Talk with your Rheumy, express your concerns & ask his advice & what he would do, that often gets an honest answer! If none of the options are viable there are other DMARDs out there he can prescribe, leflunomide & sulfasalazine are just two.
Hi - I was ok on the 15mg MTX- at first, it was the HCQ that was making me nauseated, I am on 400 mg daily but I am starting to feel a little better the day before I inject with Methotrexate then I am sick for a few days, but this week I feel a lot worse the more I inject the worse I feel. thanks for your reply, I really appreciate it x
You really need your Rheumy's input on this don't you? It's no good feeling so rotten. Obvious solution would be to drop your HCQ dose but he'll know. Let us know how it goes. x
Nothing to do with RA but I had a wry smile when I read ‘ask him (the consultant) what he would do’. I tried that many years ago when deciding if my 8 year old should have a minor operation. His reply - ‘I would hope that I never had to make that decision.’ !! Ho hum.
Well that wasn't very helpful of him was it?! I would hope if any Specialist was asked that sort of question he'd gather that his patient was at a loss & maybe needed more information or support to help them make their decision. He responded in the literal not figural (as it was asked) & showed lack of empathy don't you think, in your position as a parent especially.
I agree entirely - tbh I was a bit gobsmacked at the time and although my son had the op and was fine, I did feel that a more helpful response would have helped me. This was more than 20 years ago so perhaps it is less likely to happen today..........?
When asked to make a medical decision any support from the person asking the question, the one who knows the ins & outs is helpful, particularly when the person expected to make decision has no clue. It's less surprising though being so long ago, maybe to be more expected of the Specialists of that era I mean.
Hi ladyelizajane
Similar to you, was 20 mg MTX but they reduced it for me as so ill, week long nausea, headache, mouth ulcers, head sores, brain fog etc. Am now on 12.5 mg metoject with 2x200mg HDXYC added in and take folic acid 6 days a week plus drink loads on day. You're right quality of life is so important; I despaired at start, I would ring rheumatology advice line: they were v good with me. I personally don't think injections make a lot of difference but we are all different. nmh is right, both drugs can make you nauseous.
I now have wipe out day the day after injection and feel nauseous 3 days of week but read people's reactions to other drugs and am sticking with both at moment as so effective with joints (this may change!); each new drug seems to take up to 3 months to work. NRAS did really good leaflet on diagnosis and different drugs and side effects or on their website. It is always a toss up between what works for you and side effects of drugs, no one size fits all. Wish they did have something that worked with no side effects! I was diagnosed with RD 6 months ago after 6 months of worsening symptoms and the 'cure' still seems worse than the disease sometimes, although lots on here say that improves with time. I still have hip pain and wrists hands but no where near as debilitating as at start. Wish you well, whatever you decide.
Keren
Yes I do
I’ve been taking methotrexate 20mg weekly since diagnosis starting with tablets and changing over to injections 5 months later due to nausea.
I don’t like taking it as it makes me so nauseas and tired. Tried sulfasalazine hydroxychloroquin and leflunomide. All have stopped due to side effects.
Rheumatologist doesn’t want to stop as it’s gold standard treatment for RA. But might reduce if DAS score is low and Benepali is working.
I’m now taking Benepali 25mg twice weekly which have been ok since November.
Hope you persuade your rheumatologist to stop it.
I'm in exactly same position as yourself .Starting 20mg on Monday.I too have a bad hip ,it just gives such a pain as I put weight on it then I can't put weight on it for a few minutes .Had a few falls because of this .It happens with my ankles from time to time.I really feel terrible most of the time .Exhausted doing nothing some days 😖and running to loo for two days after taking it .Don't go out just in case 😏no way to liberty it ?but don't know the answer😐
Yes same problem exactly except I was taking the pills. I decided to stop the methotrexate and my doc agreed! I’m still going to start a new treatment this month , but do insist that they switch your meds because although the Methotrexate does work there is no point of you being miserable and looking horrible while in “treatment “
I have been on the injections for sometime now and I take folic acid after the injection for a couple of days and this seem to help with the nausea problem but unfortunately with a toxic drug there will always be side effects
Mtx was hellish for me. I stuck with it for 4 years swapping from
Pills to injection with still suffering from nausea. I became phobic about going out with my quality of life being pretty dismal, and so when the rheumatologist suggested coming off it totally I jumped at it! My quality of life is all back to normal now and am on embrel sulphasalazine combo which is working well .. so far! Thank goodness Come off it as your quality of life is more important and there are so many options out there that you will get on with much better. Good luck. TTx
Hi, from 20mg MTX to 17.5 MTX injections plus Hydroxychloroquine, plus Benepali are an option, they are working for me, but i do understand the nausea, as I do suffer from that causing constipation as well however my consultant has advised that I take Normacol which is a great help but not for the nausea
Hi I was on methotrexate tablets and then injections and for a whole year I felt very nauseous ! Plus they didn't work!! Managed to get changed to sulphasalzine and now on cimzia injections also. Feel a little better but no sickness. Hope you get sorted x
I felt exactly the same on MTX, I tried injecting and the tablets. Decided to come off it in the end as I thought the pain was better than feeling terrible all the time. I'm now on Leflunomide, Hydroxycholoriquen and Sulfasalazine. Not a great mix and some side effects but no where near as bad as MTX. Hope you find the right combination soon.
Hi, I was on MTX injections and HCQ for about 6 years and finally decided the nausea for 2-3 days a week was not helping me have a happy life. The rheumy was happy to take me off mtx and put me on Leflunomide with HCQ. It seems to be working OK, I still have that overwhelming need to stop doing things at around 2 in the afternoon and then pick up a bit by the evening. No nausea anymore and I don't have the awful pain, but I do get more stiff joints than on MTX, but hey, age takes a toll anyways. Talk to the rheumy, I'm sure he will help. I was told 10 years ago I would be prescribed different drugs throughout the rest of my life and to expect things to change from time to time and when one thing stops working, they will try something else, fortunately the research does seem to keep on producing improvements. Compared to how things were even 20 years ago the drugs are miraculous. Good luck with you next appointment.
Hi. I recommend you take folic acid. One pill a day before you take methotrexate and one a day after. It helped me 100%
I am on folic acid 6 days a week, thanks for your reply
Yes I feel the same . I have been taken off MTX once already but am now on a lower dose but still very nauseous. I don’t think the biologic helps much either. Taking folic acid 6 days a week and does help on some days😟
Hi that's exactly what happened to me. Ok for about 2 years then side effect got worse and worse. Stopped taking it after I injected on the Wednesday and felt awful till the Sunday. Same has happened with Leflunomide night sweats and fatigue were horrendous. Due to get a hip replacement but had to cancel as I felt so ill. Within three to four weeks of stopping night sweat decreased and although I get tired not fatigue. Now waiting for date for op and not taking any dmards.
I also couldn’t tolerate the methotrexate. My doctor switched me to Arava. I take it at bedtime. Perhaps your doctor would consider it (aka luflonimide).
I am seeing her on Monday, I am going to ask her if there a suitable alternative. I am really miserable nauseated and my hip is giving lots of pain. The methotrexate seemed to suit me, I was fine on but as the times went on I am not tolerating it. Thanks for you reply, its great to have this forum where we can support /help one another. Hope you keep well
Hi ladyelizajane, so sorry you are feeling so awful! I am on the same MTX injections and HDYCQ combo, which is great for my joints but awful with the nausea. I swapped from oral max to metoject because the nausea was unbearable on the tabs and have been injecting for about 15 years now. I find it's the HDYCQ that causes my nausea as I have the every day and suffer daily, combined with bad stomach cramps. Sometimes wonder if it's worth it for such awful side effects.
I would definitely advise you to speak to your consultant on Monday as having quality of life is so important! I am sure they can try you on other tablets and see how you go? Personally, I have exhausted all my options so just have to get on with this as there are no alternative options that don't make me hug the loo - literally!!
I hope you find a solution.
Hi been on methotrexate about ten years now taking 20mg injections for a few years started on tabs had a few bad flu like symptoms ever so often last one over a year ago although it wasn’t very nice at first at least I could turn over in bed and eventually walk without pain I thought it was worth
I'm sorry you are having a rough time ladyelizajane. YES, I absolutely had this too!! I gradually developed worsening daily nausea (and diarrhea) after 2 years on injectible methotrexate 25mg weekly and daily hydroxycholoroquine. The nausea became so severe and constant, I was desperate. Two different rheumatologists *insisted* there is no nausea side-effect from injectible methotrexate. And I've only read two other posts on this same problem. I even had a ton of labs and GI tests but they found nothing.
This is what worked for me, step by step: First, my family doctor gave me ondanesetron 8mg to help decrease the nausea sensation. Second, I made sure I was taking the right amount of folic acid daily and not skipping days. Third, I was started on a biologic & I was allowed to stop hydroxycholoroquine (which helped decrease my nausea almost 75%)! Fourth and last, I was allowed to gradually reduce my injectible methotrexate to 10mg weekly.
Now I only have slight nausea the night of and day after my 10mg injectible methotrexate. I don't need the ondanesetron. My RA is finally well controlled on the Humira too, its like I have my life back. I hope my story might somehow help you. Best of luck!!
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