Methotrexate

[Brian1977]

How long did everyone stay on methotrexate before it was decided that it wasn't helping. I've been on them 6 months now and feel even worse

[Madmusiclover]

that’s too long! I was on it about 8 weeks by mouth and a month injections. In my case no improvements and I felt poisoned and unwell.

[Brian1977 in reply to Madmusiclover]

What did they move you onto. I see the consultant on the 18th April so hopefully he suggests something else.

[Madmusiclover in reply to Brian1977]

I went through all the DMARDS and a biologic before finding my magic JAK. The funding regime was probably more strict then and we are all different. When I rang (in tears) to explain how awful I felt they told me to stop and I got an appt to review.

[Mmrr]

I was on MTX for 11 months feeling rough every minute of every day whilst on it. I eventually stopped it myself, called rheumatology and told them I wasn't taking it anymore.I'm now on a JAK inhibitor.

I would never tolerate 6 months (or another 11 months) of feeling so unwell again. There are many meds out there that will suit you better.

[Amnesiac3637]

Agree with all the others! Horrible drug -loathed it for the three years or so I was on it some twenty years ago now as it was then one of the few there was. I felt ill for four days out of seven and in the end just refused to take it. I have a brilliant rheumatology team and have been with them for over 30 years now so they tried other drugs instead. Like madmusiclover am now on Filgotinib (Jak ) which seems to be doing the trick so far.

It’s your body and you don’t have to put up with taking anything that makes you feel vile. There’s loads of new drugs replacing the old staples which are far more targeted and much less likely to cause all the problems of Methotrexate. I’ve had 90% of them so can speak with some experience!

Best of luck and hope you find the right treatment soon.

[Sheila_G in reply to Amnesiac3637]

I wouldn't call mxt a horrible drug because it doesn't work for you. Mxt has been a lifeline for many, many people myself included. I have been on it for 21 years and it is perfect for me. Of course everyone is different and some people won't get on with it but one man's trash is another man's treasure.

[nomoreheels in reply to Sheila_G]

I agree. Maybe simply saying it wasn’t the med for them in a less fervent manner would have been more constructive. Mainly concerned for anyone new to MTX, especially the newly diagnosed who may not have contributed here yet but do read our posts. MTX isn't still considered the gold standard DMARD for the last 35 years for nothing, yet there naturally will be some it doesn't suit, no different to any other med from that perspective. Equally, it can be game changing… like you I’ve been on it a long while with few issues.

[Sheila_G in reply to nomoreheels]

Yes, it's scary enough when we have to take new drugs but maybe the person was just feeling really bad. We all say things then wish we hadn't. That's the story of my life. The other point of course is that mxt is a cancer drug so helps people to survive as well as making life much more bearable for a lot of us.

[nomoreheels in reply to Sheila_G]

It was also that Amnesiac has a medical backround so maybe I would have expected a less strong response. You do have a point though, maybe she was feeling bad, though it's been a while since she took it, or having a bad day, if that's what you meant.

[Brian1977 in reply to nomoreheels]

I'm so sorry for causing an argument 😞

[nomoreheels in reply to Brian1977]

Not an argument Brian. We’re generally close as a group & don’t come to blows very often!

I hope whatever is considered the best course of action turns out to work well forvyou, without unwanted problems.

[Sheila_G in reply to Brian1977]

No-one's arguing Brian. Don't worry. I hope all works out well for you.

[Brian1977 in reply to Sheila_G]

Thankyou ❤️

[KASHMIRI1]

I have been on it for about 7 months and it has worked like a dream for me. The steroid reductions who!e taking it have been so much easier

[Brian1977]

Thanks for all the answers I'll see what the consultant says on the 18th hopefully they will move me onto something else 🙏🙏

[smilelines]

I was changed from methotrexate to leflunimide. It was much better. It is supposed to be equal in effectiveness..

[Gnarli]

Oh dear. I would feel I'd given it a good go and if it's not helping it's time to try something else. I've been on it for six years, tablets and metoject, and apart from the wobbly beginning has worked well for me. You need to tell your rheumy it's not helping and ask for something else. We are lucky to have plenty of choice, so here's hoping the next med is 'the one'.

[Nana246]

I started on methotrexate very early 2022 and added hydroxychloroquine after about four months as needed a bit more help with RA. This still wasn’t controlling the active inflammation so have just started on Humira. Taking all three now and pred to control inflammation until the Humira kicks in. I didn’t want to take any drugs at the start but have recently had a hip replacement and have other joint damage due to the RA and I’m not keen for any more damage. I can’t believe they have left you for 6 months if the methotrexate isn’t helping. I am in Australia. Hope they help you very soon😊

[Brian1977 in reply to Nana246]

I was just diagnosed last month with osteoarthritis on both hips and hip impingement too so seeing consultant about that too

[Nana246 in reply to Brian1977]

hi Brian early last year X-rays showed moderate osteoarthritis in my hips. I complained to rheumatologist for months saying pain was getting worse. She told me it was mechanical and to get physio and exercise which I did. It made no difference pain and mobility got worse. In august I virtually said I wasn’t leaving her office until she helped. She sent me for MRI s which showed, among other things, left hip advanced osteoarthritis, marked active inflammation and the report asked if was a history of inflammatory arthritis. So my RA was not under control. The left hip was so badly damaged I needed replacement asap. I have changed to a new rheumatologist now. Just telling you because things deteriorated very quickly in my case apparently. My other hip showed as moderate to severe in august but luckily it’s not giving me trouble at the moment. Things can happen quickly with RA 😊

[Brian1977 in reply to Nana246]

You poor thing 😔 I complained in December that I was in severe pain with my back and hips. Eventually the rheumatologist nurse phoned me after Christmas and said it could be just due to me being constipated due to my colitis or it was probably sciatica. Eventually they got me xrays booked in for February. I see the consultant on the 18th. I've learned to live with the inflammatory athritis in my hands feet and knees but the pain from my hips and back is awful. I struggle to walk cant bend over without being in severe pain and it goes up the middle of my back

[Gottarelax]

I've been taking it for 5 months and after 3 the nurse added sulfasalazine. That's not really working yet either but I need to give a little more time before the next change which will be to add hydroxychoriquine. It's a slow path but I think that if you're feeling worse, they should definitely be looking at alternatives by now. Are you having regular blood checks? I found that my CRP levels were going back up and think that this was partly why they made changes.

[Brian1977 in reply to Gottarelax]

Yeah I have to go for bloods every week because my alt levels keep being high due to the methotrexate it's a nightmare

[Gottarelax in reply to Brian1977]

In that case I would have thought they'd have already switched medications. I had one test with abnormal LFT and they took a second test there and then to check whether it was still abnormal before I had my next dose of MTX. If it had been abnormal, they would have transferred me off MTX but since that one odd result, it's been normal.

[bienassis]

Hello Brian 1977,

A quick answer - I've been taking MTX for for 25 years - first in tablet form, then a change to injections in 2015. The effect has been very good - 10mg per week. I had a brief period with a biologic in addition (2 years) but am now back on MTX alone.

So this demonstrates how personal the reaction is to any drugs - there is no magic bullet for this disease, unfortunately.

I do hope you find a drug that suits you - there are many more now. Don't give up!

[Mozart150]

hi I was told I had to stay on it for six months (started at 20 mcg I think) I had eight weeks of Prednisolone so really improved but once that had finished couldn’t even step up a small step without being in agony. The consultant I was under then insisted I stay on it ( during this time my GP got me into the local hos and the rheumy there upped Methotrexate to 25mcg. and added in Leflunamide (think the NHS pathway was to add in another DMARD next). Then I had a really high liver blood test about eight months of being on Methotrexate and was taken off it. My con was a locum and left and I was under nurses who insisted I stayed on Leflunamide and added in anti TNF (had two of those and they didn’t work for me). It is frustrating because they make you stay on some meds because they say they take up to six months to work fully all the while the disease was highly active. Good luck

[smilelines]

I was on it for only three weeks and then went on leflunimide. In Canada you have to try the cheaper Dmards before they will think about biologics. I think you have given it a good shot. It should be working by now.

[TerrilouiseS]

this is too long. If the side effects outweigh the benefits or there are no benefits get rid.

Injections may work for you, they did not work for me.

I moved to a biologic from mtx. It wasn’t the drug for me I hated it but my grandad started on mtx and saw results in a few months so it’s very personal!

if you’re in lots of pain ask for steroid injection it will help no end.

Good luck with finding the right drug for you.

[Brian1977 in reply to TerrilouiseS]

I'm hoping they change it when I have my appointment with consultant on the 18th 🤞🤞🤞🤞

[TerrilouiseS]

everything crossed for you

[Brian1977 in reply to TerrilouiseS]

Thankyou reading your story is inspiring so glad you came out the other side. 💗 I was diagnosed with ulcerative colitis 2 years ago the inflammation went through my whole colon took them 9 months to get under control then all the inflammation spread to all my joints. Then last month they said I've got osteoarthritis too in both my hips been some journey. But reading stories like yours gives me hope 🤞🤞🤞

[Lex54]

Hi Brian I only started Methotrexate about 4 months ago. A very small dose but alongside Hydroxychloriquine and Sulfasalazine. I'm now on 15 mg with Folic acid on the days I don't take Methotrexate. Not many side effects and feel much better for adding this in . Good luck!