hi all, I’ve been having a bit of a rough ride with RA recently, i don’t seem to be able to get my condition under very good control unless I take methotrexate with a biologic.
I took methotrexate for 10 years (tolerated but lots of side effects) but then after 10 years the side effects became too much for me (sickness that left me in bed for 2 days) it was like my body was saying no more.
I was given Tocilizumab as apparently that’s good with out the methotrexate however my condition is not very well controlled.
I have already tried Baricitnib, Enbrel, rituximab (allergic reaction).
The consultant mentioned adulilumab or Filgotinib. Has anyone got any experience of these drugs?
my consultant seemed to think side effects for methotrexate were rare??
Anyway hope everyone is ok xx
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Claire32
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Hi Claire. I was unable to tolerate MTX (and loathed the side effects) when first started on it donkeys years ago ( took it for four years) so since have had mono-therapy. Quite a few drugs, including most of the biologics, later I went onto Baricitinib. That really suited me but it failed after I had Covid in 2022. After that I went onto Tocilizumab for about ten months but that didn’t control my RA at all and made me ill.
Since last April I’ve been successfully on Filgotinib on 100mgs daily due to my age (71) and low lymphocytes on the higher dose of 200mgs. I’ve done well on it. It’s a ‘kind’ drug. No side effects, easy to take in tablet form and a very short half life so out of your system very fast if you hit trouble. Very similar in mode to Baricitinib in that regard. Others on the site are on it and mostly in favour.
It’s such a lottery as to what suits one may be rubbish for someone else as we’re all so different. I’ve had RA for 34 years and have also been on Prednisolone daily for all that time so that changes how my drugs affect me. Do hope you find one which’ll work well for you. Best of luck!
MTX didn’t suit me but LEF was great. Because of a kidney injury it had to be stopped. Then AZA also good with Benapali. No issues apart from initial side effects. The LEF was no responsible for the injury.
Neither me nor my (now 17 year old) daughter could tolerate methotrexate. I felt nauseous and wiped out for 5 days after taking it. My daughter threw up continuously for 2 days each time. Both of us now take leflunomide with no issues alongside our biologics.
On the other hand I took 25mg Mtx for 7 years & felt as if I was cured…until with no dramas…it just stopped working. No explanation just lousy blood test results & all the aches &pains returned.
Went on to Leflunomide & besides eliminating my appetite to the extent I lost a terrific amount of weight …..my DAS went through the roof….& the aches & pains got worse.
Rtx infusions took over 7 years ago …..without.Mtx,….& that regime has been very successful.
Hi Claire I was on Methotrexate on its own for a number of years, other drugs I was given alongside it having failed. The MTX sorted out my hands but never controlled inflammation in my feet which was at a chronic stage with joint damage as a result. About 16 weeks ago I was given Filgotinib 200mg tablets one per day in conjunction with the MTX pen 25mg. It’s been a complete game changer for me, with very few side effects - headaches, mouth ulcers and sore throats, which were all gone by the end of the first month. I can walk freely again, I don’t have morning stiffness, and I’ve stopped relying on pain killers. We are now at the stage where they are reducing my MTX dose to 15mg per week as the Filgotinib is working so well. I’d definitely have a conversation with your consultant about it, and check out other posts about Filgotinib on here, there’s been a bit of discussion about it.
Methotrexate is tolerated well by some, not sure of the statistics but I’d guess it was roughly 50/50. The problem is, for so many years it was the most reliable, affordable and effective treatment available. Patients just had to get on with it.
Thank goodness for modern medicine and updated practice. Yet not fully embraced but certainly better.
MTX side effects landed me in hospital for days. Cannot take DMARDS-hydroxychloroquin also landed me in hospital. I am fine on a biologic now. I don’t think it’s rare to not tolerate one or more drugs.
I had bad side effects with methotrexate until I found one that agreed with me. Am on Nordimet - an Ipen containing methotrexate. Avoids going through the stomach. Good luck.
I took methotrexate for 3 years but stopped although at was great as I did not like side effects. I had thrush 24/7. Now I’m in pain. I don’t know what to take next?
I don’t tolerate metho. Currently on upadacitinib. (Rinvoq). Doing ok. Started it about 5 weeks ago. I also took solo Baricitinib which stopped working after 3 years or so.
I couldn't stick with methotrexate either, awful side effects for me, depression being the worst. But it's an individual thing, lots of folk on here can't tolerate sulphasalazine but I am absolutely fine with it. Hopefully you'll find what works for you soon!
A consultant who thinks that methotrexate side effects are rare hasn't been listening to their patients! I reckon about half of people given it do really well, it controls their disease and without much in the way of interrupting their lives in other ways.
Another proportion struggle, but cope with minor side effects which have generally lessened as they get used to it.
But a substantial number have really severe side effects. For me that comprised pre-senile dementia type mental effects, and depression, enormous mouth ulcers, vomiting, diarrhoea, and feeling ill all the time. I tried injecting it without relief (it was worse). Stopping it was like a curtain lifting.
I am another RA sufferer who cannot tolerate Methotrexate, stomach problems are so severe I cannot have a normal life. I tried for about 3 years with different doses and ways of administration and eventually gave up.I have been taking Cymzia for over 2 years now which is very successful for me without any other drugs.I'm sure there will be an answer for you it just takes a while to find sometimes .
O I think everyone feels gross on methotrexate I certainly do. It's a funny old drug I can take it under the brand name Cipla quite well but other brands make me feel like I have morning sickness...all day...and fatigue and breathlessness at times. Is say it's famous for tummy upset xxx I have to take it with a large plain meal in the evening x good luck.
Hi. I also was on methotrexate for ten years. Apart from tiredness I didn’t have side effects but recently it hasn’t been enough so I recently started on benepali. I’m now taking full dose of methotrexate (10 pills) with the biologic. The tiredness is worse but apart from that I feel okay.
Hi Claire32, I recently started Tocilizumab and it began to work after maybe 4 weeks. Similar to you I’ve had Enbrel and Baracitinib and more previously but I couldn’t get on with MTX when given it after I was diagnosed and have never gone back to it.
As has been said above, what suits one, doesn’t suit another and it’s a bit of suck it and see. Good luck in getting settled on something that helps…
I was on methotrexate about 12 years ago, but then I went for a blood test one day and it showed a potential problem with my liver. I was sent off for an ultrasound and had weekly blood tests for a while. My consultant suspected the MTX was causing the issue, so I came off them and the liver enzymes settled down. I was also sick on the highest dose of MTX.
I have been on Adalimumab since then and it’s been brilliant. Only now am I suffering a considerable flare - seeing my consultant tomorrow to hopefully work out a plan going forward. No significant side effects on Adalimumab.
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