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Methotrexate & its side effects, any views please?

(12 Posts)
SillyNanny321 Sat 16-Sep-23 12:01:32

Hoping for some views on this medication I am told I have to take for Rheumatoid Arthritis! Taken a long time, months, to decide this is what I should take. I have problems with lots of medications the latest being Naproxen that I took for a year until it was making me more ill than the RA! So Consultant wants me to take Methotrexate! Without any fore knowledge of this something seems to shout at me No! So researched & talked to family & friends. Still a very big No! So many side effects & such a toxic drug. Two people, one close, spent time in hospital after taking it. Another was very ill after. My Daughter in laws mum is very certain that I should not take it as she is one who ended up in hospital. Is there anything else anyone has found that works without so many side effects? One I cannot take as I have AMD. Steroids help but they can be a bit dodgy. Would appreciate any ideas please?

ayse Sat 16-Sep-23 12:16:57

My DD1 takes methotrexate for psoriatic arthritis and has been doing so now for at least 10 years. She was diagnosed with psoriatic arthritis which has lead to her joint problems. She is carefully monitored for any adverse effects and does give her body a rest from time to time.

It’s certainly helped her to live a near ‘normal’ life although she has to pace herself. BTW she lives in NZ.

Mrswoodcutter Sat 16-Sep-23 12:29:00

Not really an answer to your question but I have been taking Methotrexate for probably 20 plus years.
Obviously we are all different but for me it has been a life saver allowing me to lead a near normal life. I have looked but have not found a drug with fewer side effects which would help me.
But hope you find something to suit your needs.

crazyH Sat 16-Sep-23 12:29:14

My friend has been taking it for a very long time. She was diagnosed with RA in her 30s. She is now in her 70s. She copes very well. The medication helps her pain and mobility. The medication has helped her lead as normal a life as possible and she hasn’t mentioned any side-effects.

Candelle Sat 16-Sep-23 12:49:08

I take steroids and hate all the problems that they give but of course, love the fact that they remove pain.

Many drugs have side effects which can be visible or not but they do affect the body.

Methotrexate is an alternative drug to the steroids and I know of many people (on an on-line forum) who are very happy with it as they don't need the steroids!

I do know that Methotrexate is not prescribed willynilly and feel that if it has been suggested to you, you should consider it. There are always those wo have negative views of something and will voice them but those who have a positive view often don't vocalise.

I was prescribed a drug a year or two ago and although I know that the drug information sheets can be worrying, this was off the scale. I took the drug (which can have side-effects for many years after the course has finished) and so far have been fine and yes, it did help my illness but it was a decision that worried me, particularly at the time.

There is a wonderful website named 'HealthUnlocked' spelt as I have written it. This website is for anyone with any health problem as there are different groups on there. Methotrexate is often mentioned and discussed, so for impartial information I am sure that you will find help there. I found the site slightly awkward to use at first but am very glad I found it as it has helped me - and I have have been able to help others, too.

Glean as much knowledge as you can before making your decision and perhaps don't just listen to those for whom Methotrexate has not been a positive experience for there are bound to be more who have been helped by it.

Wishing you the best for your health.

SillyNanny321 Sat 16-Sep-23 15:20:09

Thanks to all of you who have answered. Really puts the question into perspective, thank you all!

Yiayia4 Sat 16-Sep-23 15:50:29

I was advised to take Methotrexate for inflammatory Arthritis but after discussing with my rheumatologist I decided on steroids.They keep me going and so far have managed to dodge knee and hip replacement.Not sure for how much longer though.

Lexisgranny Sat 16-Sep-23 16:13:15

I too have been taking methotrexate for over 20 years. I have had rheumatoid arthritis for over 40 years and initially had tried virtually every drug that was available during that period. At first I had itin tandem with gold injections, but after a few top years I started reacting badly to these and they were stopped. The only reaction I had to Methotrexate was right at the beginning when I was slightly nauseous after taking them, this was soon remedied by taking folic acid on the days when I didn’t take Methotrexate. Like others it was a game changer for me. The change that it made to my life was incredible.

shysal Sat 16-Sep-23 17:20:04

I have been on Methotrexate for 6 years for RA. Initially I experienced a burning mouth and slight hair loss, but was prescribed Folic Acid on the other 6 days of the week (Methotrexate is once a week) which stopped that. I have only short-lived flare-ups, but live a near normal life. I have blood tests every 3 months and apart from the inflammatory marker everything else remains normal.
After a year Hydroxychloroquin was added, I am not sure why! This requires an annual eye check. The nursing team are considering stopping it, which would suit me as long as I stay at this level of comfort. I haven't been seen in Rheumatology since before lock-down, but have annual phone appointments and can contact the team at any time if necessary.
I hope you find reassurance from our posts and that you find the right treatment for you. Sometimes reading the leaflet for any medication can be alarming! Good luck!

SuperTinny Sat 16-Sep-23 23:39:18

Methotrexate was developed as one of the first chemotherapy drugs. There are much more effective and targeted chemotherapy drugs now and Methotrexate is rarely used as a cancer drug. However, a bit like aspirin which was discovered to have a more therapeutic effect than just a pain killer, it was determined to be very effective treatment for autoimmune disorders.
My DH has taken Methotrexate for severe psoriatic excema for about 6 years now. It really was game changer and he wished he had started it sooner. He is monitored with blood tests to ensure his liver is functioning properly. He recently had to step back on a dosage because of this but it was only temporary and he is now back on his usual dose. He isn't even on the maximum dose because his symptoms are managed at a lower dose. You may find the same thing.
I guess the trade off is how severe your RA symptoms are. It would do you no harm to try it. You can always come off it.

CassieJ Sun 17-Sep-23 10:11:41

My mum also has RA and has been taking methotrexate for over 20 yrs with no real issues. It has helped with her symptoms.

Remember that all medication comes with side effects, including paracetamol. Leaflets have to tell you ALL possible side effects, it doesn't mean that everyone has them.

watermeadow Mon 18-Sep-23 09:06:10

I think the new RA drugs are miraculous. Gone are the days when you had 2 options, steroids or surgery.
My daughter has had RA for about5 years, under the care of a wonderful consultant. She was told that it is treated aggressively now, right from the start, to protect joints from irreversible damage. She has no pain or inflammation, is very active and well and is constantly monitored.
RA can ruin your life, it’s well worth trying the new drugs.