Methotrexate side effects
Discussion
After losing most of this year being laid up and almost house bound some days, after more tests and scans than I can remember to rule other more sinister stuff out, I have finally been diagnosed with Polymyalgia rheumatica and Psoriatic rheumatoid arthritis. I have been on a decreasing 8 week course of steriods which have worked wonders, literally within a week of starting them 99% of the joint and muscle pain went away. The course is due to finish in a couple of weeks and they are proposing moving over to Methotrexate for more long term use, but after doing a bit of reading up they do seem to have some strong side effects. Anyone on here have any experience of taking them long term? Any Medic comments extra welcome
I have rheumatoid arthritis and have tried various treatments over the years.
Because of issues with my liver they were reluctant to put me on methotrexate so initially i had gold injections which 8 months down the line they stopped as they did absolutely nothing.
They then tried me on sulfasalazine, i got to about 4 weeks in with them increasing the dose each week and the sickness became too much for me to cope with.
So in the end they put me on methotrexate which ive been on now for probably 10 years or more and its really brought my symptoms under control, the inflammation levels are pretty much normal so now my main issue is the damage done to my joints in the previous 30 years my RAS was undiagnosed and uncontrolled.
Side effects for me on MTX have been minimal and now apart from remembering to take them once a week its not an issue for me.
I had to come off MTX for a while when we were trying for a baby and at first i didnt notice any difference but i did get gradually worse after 6 months so as soon as we had conceived i went back on it.
Because of issues with my liver they were reluctant to put me on methotrexate so initially i had gold injections which 8 months down the line they stopped as they did absolutely nothing.
They then tried me on sulfasalazine, i got to about 4 weeks in with them increasing the dose each week and the sickness became too much for me to cope with.
So in the end they put me on methotrexate which ive been on now for probably 10 years or more and its really brought my symptoms under control, the inflammation levels are pretty much normal so now my main issue is the damage done to my joints in the previous 30 years my RAS was undiagnosed and uncontrolled.
Side effects for me on MTX have been minimal and now apart from remembering to take them once a week its not an issue for me.
I had to come off MTX for a while when we were trying for a baby and at first i didnt notice any difference but i did get gradually worse after 6 months so as soon as we had conceived i went back on it.
I have Large Vessel Vasculitis, another auto-immune disease.
I was originally given steroids and the pain disappeared overnight. I was later prescribed methotrexate and tapered off the steroids.
I have been taking the methotrexate for over 4 years now. I have occasional fatigue, mild feeling of upset stomach and nothing else I’ve noticed. I am also prescribed Folic Acid which is to supposed to help with side effects.
I find the biggest drawback to methotrexate is having to watch your alcohol intake and not eating liquorice!
I have recently been put on Tocilizumab, by weekly self injection, and will start to taper the methotrexate later this year.
I was originally given steroids and the pain disappeared overnight. I was later prescribed methotrexate and tapered off the steroids.
I have been taking the methotrexate for over 4 years now. I have occasional fatigue, mild feeling of upset stomach and nothing else I’ve noticed. I am also prescribed Folic Acid which is to supposed to help with side effects.
I find the biggest drawback to methotrexate is having to watch your alcohol intake and not eating liquorice!
I have recently been put on Tocilizumab, by weekly self injection, and will start to taper the methotrexate later this year.
Notsofastfrank said:
I have Large Vessel Vasculitis, another auto-immune disease.
I was originally given steroids and the pain disappeared overnight. I was later prescribed methotrexate and tapered off the steroids.
I have been taking the methotrexate for over 4 years now. I have occasional fatigue, mild feeling of upset stomach and nothing else I ve noticed. I am also prescribed Folic Acid which is to supposed to help with side effects.
I find the biggest drawback to methotrexate is having to watch your alcohol intake and not eating liquorice!
I have recently been put on Tocilizumab, by weekly self injection, and will start to taper the methotrexate later this year.
Not eating liquorice?I was originally given steroids and the pain disappeared overnight. I was later prescribed methotrexate and tapered off the steroids.
I have been taking the methotrexate for over 4 years now. I have occasional fatigue, mild feeling of upset stomach and nothing else I ve noticed. I am also prescribed Folic Acid which is to supposed to help with side effects.
I find the biggest drawback to methotrexate is having to watch your alcohol intake and not eating liquorice!
I have recently been put on Tocilizumab, by weekly self injection, and will start to taper the methotrexate later this year.
That's a new one on me.
Although one of my other medications means I can't eat grapefruit or drink grapefruit juice.
Most likely to be a journey of trial and error to determine which DMARDs (MTX, sulfasalazine etc) are most effective, and then if not tolerated or contraindicated then biologics such as anti-TNFs. Linked is an example of treatment pathway that you may experience. Dont be afraid to say if things dont work or you feel worse
https://www.hweclinicalguidance.nhs.uk/all-clinica...
https://www.hweclinicalguidance.nhs.uk/all-clinica...
blue_haddock said:
Not eating liquorice?
That's a new one on me.
Although one of my other medications means I can't eat grapefruit or drink grapefruit juice.
Liquorice leaches calcium apparently. Now you mention it I can’t remember if methotrexate does this or one of the other meds I’m on!That's a new one on me.
Although one of my other medications means I can't eat grapefruit or drink grapefruit juice.
Wife has RA and has been on Methotrexate for 10+ years
They will almost certainly start you on tablet form. This, my wife found to be particularly harsh in terms of having bad nausea literally all the time with it. BIL went on it recently and he'd the same issue.
If that is the case for you, push for injections. The nausea is more contained.
They will almost certainly start you on tablet form. This, my wife found to be particularly harsh in terms of having bad nausea literally all the time with it. BIL went on it recently and he'd the same issue.
If that is the case for you, push for injections. The nausea is more contained.
My brother has psoriatic arthritis and was diagnosed about 15 years ago. He was on all sorts of medication to help and ended up on methotrexate, or “meth” as he called it! It really didn’t agree with him, he ended up on injections and would be so ill for days after. It was a decision whether to take the injection at the beginning of the week and be at work feeling awful or take before the weekend then end up losing his weekend to “meth”. Looking at him you’d have thought he had a heroin problem!
Anyway he persevered for a few years and although his psoriatic arthritis was more under control he decided, during Covid, to go cold turkey and see what happened. His condition seemed to have levelled off so now he’s on no medication. Obviously he has bad days and isn’t able to do things he should be able to do at 54 but he saw methotrexate as poison not medicine.
Saying that he works with someone who also has psoriatic arthritis but is older, he’s been on methotrexate for many, many years with few if any side effects. I guess it’s a case of try it and see!
Anyway he persevered for a few years and although his psoriatic arthritis was more under control he decided, during Covid, to go cold turkey and see what happened. His condition seemed to have levelled off so now he’s on no medication. Obviously he has bad days and isn’t able to do things he should be able to do at 54 but he saw methotrexate as poison not medicine.
Saying that he works with someone who also has psoriatic arthritis but is older, he’s been on methotrexate for many, many years with few if any side effects. I guess it’s a case of try it and see!
Everybody reacts differently to a particular drug, some people experience side effects, some don't. Definitely complain / raise it with your GP if you are unwell on a medicine and ask for something else. There are often alternatives available, especially for DMARD's. Don't suffer in silence.
Some of the active ingredients of liquorice affect metabolism / uptake / clearance of methotrexate. Liquorice can also affect blood pressure.
Gives a new meaning to 'going Bertie' - if you eat a lot of the stuff like the Danes / Dutch.
Grapefruit juice notoriously affects some of the liver enzymes involved in the biotransformation of xenobiotics (e.g. drugs like methotrexate), these are necessary for the drug(s) to work properly.
Some of the active ingredients of liquorice affect metabolism / uptake / clearance of methotrexate. Liquorice can also affect blood pressure.
Gives a new meaning to 'going Bertie' - if you eat a lot of the stuff like the Danes / Dutch.
Grapefruit juice notoriously affects some of the liver enzymes involved in the biotransformation of xenobiotics (e.g. drugs like methotrexate), these are necessary for the drug(s) to work properly.
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