Success stories with mtx: I am going on to mtx next... - NRAS

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Success stories with mtx

I am going on to mtx next week and all I keep seeing is a lot of negative posts about it. I am just wondering how many people out there have had a positive and successful outcome using this drug. It would really give me a huge boost to hear some success stories. Please reply if this is the case, it would mean a lot to me.

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Hi Mole,

I'm on Methotrexate, Sulphasalazine and Hydroxychloriquine and I'm now in remission and have had no problems with it, though it has taken quite a long time to get there. So please give it a go - there is hope and success. Good luck. Smiler x

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Hi I been on MTX for about 20 years and only had one plip but wouldn't want to come off it as it has made a huge change in my life it works well when combined with other drugs oh by the way I have RA , hope this helps as I know have new drugs can be very frightening good luck . Dawn x

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Likewise, just like Smiler I'm now in remission most of the time, with just small blips of low disease activity.

Do bear in mind that forums like these tend to focus more on problems than successes. I rarely post for example, because it would be very dull as have nothing to say apart from 'today was fine', or would sound smug to people who struggle daily if I posted saying 'finished housework, went for 5 mile walk, did Pilates class, made dinner, and now off to cinema'.

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Im on 20mgs injection Metz and sulfa have been for 6months,I was just wondering how long it took to work,as I first started with RA on my shoulders which are ok now,but I have it on both knees and ankles and I think my feet as well now because they are really sore when walking and red also my hips giving me job aswell but I have reumy next month ,

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It is one of those meds that cause consternation & there have been a few concerns posted recently, this can happen quite by coincidence or just get people thinking & start questioning but.... I've done really well on it for 6 years now. I started on tablets like most do, 15mg & been on injections for 4 years now. You'd have to do some convincing to take me off it though I must say since going up to 20mg a couple of months ago I've felt as though maybe the dose is a little too high for my needs & intend suggesting I try 17.5mg again & see if my inflammatory markers stay level as I'd been fine on that for about 6 months. I do have to take other meds, another 10 but MTX is my only DMARD presently. My present Rheumy suggests I take 5mg folic acid every day except the day I inject though I did start on just the one the day after & then that was increased to the day before & the day after when I started to feel nauseous. Now I just have less appetite & a little more tired the day after so just try to not plan anything for Thursdays.

My Rheumy considers me controlled but in reality my DAS score generally comes in at low to moderate disease activity. Starting double therapy with hydroxychloroquine was suggested at my last Rheumy appointment with a locum (who was a tad bolshy) but I stood my ground & suggested I try 20mg first. Reason being I've tried this combination before & it didn't work so I'm hesitant to try it again without discussing it with my Rheumy, though he tried his level best to convince me it was the way to go. If only he'd taken the time to listen to me!

Do remember that forums such as this frequently concentrate on those having problems, it's the nature of them & why I remain here to a degree because it doesn't need to be all doom & gloom, things do get better, it just takes a little trial & error & of course time & patience. :)

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Thanks for the reply. Can you explain what a DAS score is? What other markers do they look at to see how things are progressing? Also am I entitled to have my blood results myself? Sorry for all the questions, I am new to all of this.

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Don't try to learn everything instantly, there's a lot to cope with. So ask questions when they come to you.

DAS 28 is disease activity score and is a method used by many docs to assess progress. NRAS have good information about it here

nras.org.uk/disease-activit...

It's based on a combination of results of blood test, physical symptoms and how you say you feel. Every now and then docs may also use scans, x-Rays and ultrasound to assess how you're doing. But it's variable.

And yes you should get your blood test results from your GP or the hospital according to where you get your bloods done. I find it very helpful to keep track of them

If you start Methotrexate you can use this monitoring booklet here

nrls.npsa.nhs.uk/EasySiteWe...

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Apols for late reply, just back from hospital visit. Helix has already answered your questions so not much for me to add except maybe a good read through the NRAS website may help nras.org.uk & anything that crops up that you're unsure of or need clarifying ask away. It is a huge learning curve, lots to take in so no need for sorrys! x :)

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Thanks for everything, much appreciated. Just in such a state really, I have a beautiful Grandson who is just started toddling and he puts his arms up and I can't pick him up because my wrists hurt so much, brings me to tears. x

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That must feel awful, they don't understand properly at that age do they? How about the next time he does it sit nearby & ask him to come to you & try lifting him using the crook of your arms. I have OA in my hands so they're a bit weak, I find I have better strength there & weight bearing is easier. Being closer to him height-wise by sitting it may not be quite such an effort. Worth a try. x

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Meant to add this too 4s-dawn.com/DAS28/DAS28.html. It shows clearly all the joints which will be tested by your Rheumy as part of the DAS 28 examination. You could even score yourself if you'd like though you may not be able to complete it fully unless you know what your ESR or CRP levels are (inflammation blood test markers).

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I'm on 20mg a week and have been taking it for just over a year (started on 10mg a week for a month and then went to 15mg, 17.5mg and 20mg 3 months after starting). A gradual build up definitely helps in my opinion. I'm not on any other med and my RA is considered to be mainly 'inactive'. I've always taken my MTX in the morning with porridge and fresh ginger root cut finely into the porridge and only suffered mild nausea in the first 3-4 months... Nothing now regarding side effects unless I forget to drink loads of water and then I get headaches.

All the best

Ali

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Thank you so much to all of you that have responded, it is a great comfort to hear of success stories. I there more people out there with these types of stories please post them, it does help so much.

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Hi, I've been taking it for 2 1/2 years with very few problems and side effects. Has worked so well for me I'm currently on residential activity week with students and today have managed a 3 hour canoe trip and will be climbing and abseiling tomorrow. So try not to worry and give it a chance.

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hi I am on the same meds as Smiler 53 and its the combination that has me nearly in remission, I would not like to come off these tablets. I am on injections of 20mgs. so its all positive from me. good luck mole.

take care xx

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I had 2 great years on MTX once I had worked my way gradually to 15mg. No stiffness, no pain - nothing. It was like being normal again (apart from all the tablets & the blood tests. :) )

Unfortunately, the disease got out from under it and things have been a bit variable since then, so other drugs have been added. If I was offered the chance to go back to those early days on it, I'd jump at the chance.

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Hi,

I've been taking MTX for fourteen months and feel much better. Gives me a bit of a fuzzy head the morning after taking it and feel a little nausea at times but for the improvement in the RA it is well worth it. Had trouble walking very far and was in lots of pain before I started it and now as near back to normal as possible. Very rarely have to take any painkillers unless I've been overdoing it too much.

Hope it works for you

Mike

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No side effects at all except hair loss , but they did more tests and it was down to low B12 now on injections for that and hair is normal and very thick again. I've never felt sick or anything else really a bit hot(like being on fire inside) but it was fleeting in the early days.

Ignore the horrendous info they give you if your like me read it and get it. Its a great drug not suitable for all but for me a great treatment. I told my son you'd eat broken glass if you were told the pain would go tomorrow. And it took me a few weeks to swallow the first lot as I read the horror stories and honestly I wish I'd just taken it and been pain free a lot quicker.

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Been on MTX for 4 months and I am now pain free with more energy than I've had in a long time! I take 15mg plus 5mg folic acid with very few side effects. A bit of bloating and tiredness the day after maybe. It improves every week I take it. My hair has thinned a bit but it's nothing much and I'm taking vit B to try to help with that.

I feel absolutely great and long may it continue!

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I was on MTX for over 30 years with no problems at all. The negative stories always outweigh the positives - look at the newspapers. I hope you have as much success with it as I've had, good luck!

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MTX in tablet form did not work at all for me but a gradual build up of MTX by injection worked very effectively for a while. Occasionally there was a suggestion of nausea but that passed almost as soon as I noticed it. Otherwise, apart from some hair loss, there were no noticeable side effects. (The hair came back when I came off MTX).

MTX if it works for you can make a huge difference to your life.

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Hi. I have been on MTX for 13 years. I have been on different doses, tablets, injections when the need has arisen but I have genuinely got my life back thanks to MTX. I know everyone is different and everyone will react to any drug differently than the next person but I can honestly say I have never even felt sick taking it. As you are new to the drug I would suggest, as was suggested to me by a wonderful specialist nurse who unfortunately has now retired, that you take the MTX just before bed so that if it is going to make you feel sickly you sleep through it. Good luck with it. I sincerely hope it works well for you.

Sheila x

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I was put on it 2 years ago and my hair fell out in handfuls- READ ON DO NOT DISSPARE !!, so I listened to all the horror stories and hair carried on falling out. Went to GP and advised common with MTX so back to consultant (private so no problems getting appointment) he said "its not" and did more tests to discover my tiredness was down to Pernicious Anaemia. On injections and GP said "I'm not going to argue as he can see something I can't on these results " So after 3 months on injections my hair is back to normal and I begged to go back on MTX as hands really hurting.

So my message is its about risk and benefits outweigh side effects for a lot of people. In my case it was not the MTX causing issues but another underlying condition. I still get tired but the MTX really does work for me. Always take with food and I still get a bit of hair loss but the folic acid has been increased and my hair is thick so its no longer a problem. It really helps with mobility and pain and whilst I'd rather not take anything it is enabling me to live a life which is almost back to a normal.

I live with RA very well with the help of MTX so be confident and look forward to a bit of a better life with the help of this medication. If it doesn't work for you then its on to another one but be patient. I wish you well.

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Thanks for the reply. I am a 60+ male with not much hair left anyway and I keep it short so the hair loss is not really an issue for me. I have taken 2 lots of Mtx and touch wood no ill effects. Today the pain seems to be a lot better so I am hoping that I am getting some benefit already. I know it is probably clutching at straws but my GP is doing a blood test for Lyme disease next week as a few months ago I had a deer tick on me, I had a rash on my foot but none of the other symptoms. It's peculiar really that I would rather have Lyme disease. After some research I am pretty sure that I have Psioratic Arthritis but we shall see. Anyway, once again thanks for the reply and best wishes.

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