Methotrexate : Hi everyone I am seeking some advice... - NRAS

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Methotrexate

Smurf62
Smurf62

Hi everyone I am seeking some advice about methotrexate, I have RA and have been taking 200mg of hydroxychloroquine twice a day for 7 years and it was under control, then my rheumatologist cut it down to 200mg a day as he said it is now taken by weight and 400mg is to much, since then I have had swelling in my hand and knee and he now wants me to start methotrexate, a starting dose of 7.5mg which I know is a very low dose and I also know of the wonderful results people have had from it, however I researched it and I am terrified of what I have read , more so I think because I do have allergies to certain meds and food the worst one being a steroid injection that my rheumatologist gave me, I know drs cannot guarantee who will or will not react but the experience has made me even more weary about drugs offered to me, so I would appreciate any advice and love to hear everyone’s personal experience of it thanks everyone

30 Replies
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Well you know mine! These links may help further arthritis.org/living-with-a... & bjchealth.com.au/connected-...

There's nothing better than people's experiences both good & bad when faced with concerns over a med. You may find them being unbalanced being a forum, people often only come here when they have problems, it's the nature of them. There are lots of us here though for who it does work very well though & hopefully they'll be along to share their experiences. In the meantime you'll find plenty of historic posts under the heading Related Posts on this page (to the right on my iPad). There are many many more who take it & do so well on it they are just getting on with their lives so have no need for forums.

I must say though that starting on such a low dose you're less likely to have intolerable side effects. Also if your Rheumy is using double therapy (with your existing HCQ) it could be only slight adjustments are needed further down the line. You do also have the folic acid remember, that can help a lot. There's even an alternative injection form, subcutaneous, this is how I've taken it, for 9 years, I was on HCQ for the first year. Many report fewer side effects injecting but as a rule Rheumys prefer to prescribe tablets first due to cost. When I was on tablets I didn't take them all in one go, my Consultant reckoned dividing the dose through the day with meals lessened the chance of side effects, it did. So I took the 15mg I was on at the time as 2 tablets with breakfast, lunch & evening meal. It would be one tablet each meal for you of course. Some take them at night but I was advised against this as it was considered it could disrupt sleep. Drinking plenty of water on MTX day also eleviates some side effects, flushes it through the liver better, though there's no guarantee you'll have any or if you do they're easily coped with. Try to focus on it working rather than it causing issues, mindset makes such a difference. 😊

Hidden
Hidden

I’ve been on mtx for 20 years and although I had nausea on higher doses my dose was adjusted so I didn’t have any nausea now. It made a big difference to my RA. I try not to read too much into meds now as they all have horrible things that can happen. I just try them out and see how they are for me and go from there. Good luck if you do decide to take it. Let us know how you get on x

Smurf62
Smurf62 in reply to Hidden

Will do thank you x

It works for me.

Taking it with porridge or plain yoghurt plus fresh ginger worked until I got used to it. I split mine and take half with breakfast and half at tea time.

Drink plenty of water day before, on the day and the day after. Assume that it will be fine and hope you’re right is the best stance for success I’ve found but not a guarantee alas! Folic acid supplement helps. I took 1 X 5mg tablet per week but then it was upped to twice a week, some take folic acid six days a week.

Rest loads to start with can help as the body adjusts and leave undue worry in its packet if you can!

All the best

Ali

Thank you Ali x

I was one of the first to take MTX for RA, nearly 40 years ago. It's been the best drug for me, although I do have joint damage.

Smurf62
Smurf62 in reply to BoneyC

Hi thank you that’s reassuring

I started on 15mg of methotrexate last year. It took 10 weeks to kick in, i had mouth ulcers for first few weeks but once I mentioned it they upped the folic acid and I have had no side effects. It has just been upped to 20mg and I am not anticipating any side effects from that either. Good luck and I hope it works for you.

Hiya, I started on 200mg hydroxychloroqine in July 2014 after being diagnosed with RA after having a small issue with my fingers locking. By Nov 2016 I'd had no issues at all so my RA doctor suggested a 9 month break. I was fine until March 2017 when I became extremely stressed at work and had a bad flare - so back on 200mg. Methotrexate was mentioned but I declined. Again I was fine until Sept 2018 - this time not stress but a shoulder problem whilst sunbathing on holiday! This caused the start of 4 months of bad flare and painful arms/neck/hands and left shoulder resulting in me having to sleep on my back for 5 months (I found it really difficult at first!) I was taking so many painkillers/amitriptyline/cbd capsules and Lanzoprasole I became depressed. Methotrexate was again mentioned and the pros and cons discussed. I decided to try it by injection and started it 18 Dec 2018 as well as my daily 200mg hydroxychloroqine. I was nervous for the first couple of weeks as I absolutely hate needles! I take 5mg folic acid on Sat and Methotrexate 10mg Sat. It took around 6 weeks to take any effect and now I'm totally pain free. No tablets at all apart from folic acid and hydroxychloroqine - and no side effects so far. I go for regular blood tests and all's good.

I hope my experience helps you a little! 😊

Tia53
Tia53 in reply to Tia53

I should say I do my Methotrexate injection on Tues not Sat!

Smurf62
Smurf62 in reply to Tia53

I did wonder about that lol thank you for ur reply it’s great to be able to talk to people going through or have been through what you are it’s a great support

Hi I take 400g of hydroxy and inject 20mg of methotrexate. I am fine on that and am a petite woman in my 40's. I went on Methotrexate after I also had a bad reaction to steroids. They give me tachycardia and caused uncontrollable, visible muscle spasms and cramps all over my body. However, I am doing alright on the methotrexate. Good luck.

Smurf62
Smurf62 in reply to Shelby37

Hi I was on 400 g hydro but it was lowered to 200 as my Rheumatologist Said it went on weight now and ur a petite lady the same as myself I will have to enquire if I can increase it again, I also had a horrid allergic reaction to a steroid injection actually given by my Rheumatologist Which I think is the reason I am delaying taking methotrexate glad to hear ur doing well x

Methotrexate made me feel a bit nauseous at first so went in injections. I can’t tolerate more than 15mg but I’m totally fine on that dose. I feel fine the day after too which some people have they feel shattered. I was very nervous but am happy with it now. Good luck!

Babysnoops
Babysnoops in reply to Elmo333

It made me feel sick too. Sometimes I would just throw up water becuase of it

I took methotrexate for a while but I stop taking them becuase they was making me feel sick. I have to take them with folic acid becuase of the side effects of the methotrexate. My rheumatology said okay just take ibfron when it get bad. I got arthritis in my knees, hips, back. I think I got it in my elbow as they keep clicking and it hurt but he said don't worry about it

Hidden
Hidden

Hi Smurf :),

I started on Hydroxychloroquine and had a massive problem with itching, so stopped taking it. I started on MTX @10mg per week, with no problems. Unfortunately I had a flare in my wrist over Xmas which hand therapist said indicated that MTX wasn’t doing enough. So rang Rheumy and doubled the dose, which has started to cause me issues with nausea and gastritis. She also put me on 6 monthly appointments, so unable to discuss that.

I do feel it’s important to own your own version of RA, be knowledgeable and figure out how best to make things work for you. So, I take MTX for 3 weeks and have a rest on the 4th, because I know I’m going to be quite miserable if I don’t have that “rest”. You only live once, I’m 62 and have things to do :)

Having said all of that, MTX does work, it’s just the muddling around trying to sort out the dose etc., which is a bit of a drag. Hope it works well for you, do stay in touch, cheers Deb

Smurf62
Smurf62 in reply to Hidden

Thank you all your replies are really helping I feel supported more now as I felt so alone with this decision hope that doesn’t sound stupid x

I found it to be very effective, slight nausea as a side effect but not too bad. Perhaps try it and see? All the best x

You could not be more scared than me when I first started MTX. Starting on 15mg tablets (plus folic acid, of course) I did have a problem with nausea but no nasty mouth ulcers. The nausea got so that I was swapped to metoject injections which have been a marvel. Yes, I do feel a bit less lively the day after and still get painful joints from time to time but nothing like it was at the beginning. Please let us know how you get on

Smurf62
Smurf62 in reply to Gnarli

Thank you I will

I started off on Methotrexate on a. Larger 10 mg. 2years down the line I couldn’t even take 7-5 it knocked my immune system hairwire my kidneys were effected they took me of injection went on to tablet form off that now I took one infection after the other Hydroxclor quinine Now on Another I’ve taken a rash on my ankles and back itchy Went up to 4 a day now back to 2 tablets a day sorry can’t remember the name I’m in bed trying to sleep. Tablet starts with an S

Sulfasalazine?

Smurf62
Smurf62 in reply to nomoreheels

Sorry to hear you have had problems adjusting hopefully you are settled now? I do understand that happens sometimes with disease is horrible but sores like this are great as it makes you feel more supported and less alone being able to talk to people going through the same as you

I take Mtx 20 mg per week. Take folic acid daily. Was diagnosed about 1.5 years ago. Dr added HCQ and this has been overall working well without any side effects. Cold weather flares dec- Jan but now more just minor manageable pain. I know there are side effects but also know pain and damage can occur without mtx so I’m just hopeful. I’ve had an overall good reaction to mtx.

I've been taking MTX 20mg on and off for almost 5 years. I was really resistant to taking it, and a massive drama queen about all the potential side-effects so I stopped a couple of times for quite long periods. Had to go back on it because my condition deteriorated. I haven't had any problems with it, in the event, aside from nausea which went when I increased the folic acid, and although I still hate taking it, it did the trick mostly. Unfortunately, it seems to have stopped working for me. Good luck with it anyway.

attatel
attatel in reply to attatel

In case it's bothering you,too, I have to say, one of my biggest concerns was the no alcohol bit. My social life was the pub quiz basically. The consultant and the nurse both tried to reassure me that moderate drinking once a week was ok, but by then I'd got the wind up about it. I stopped taking it. Soon I couldn't even get to the quiz so that served me right. Went back on the MTX. In fact luckily for me, I never had any dodgy liver tests at all. Check with your own doctor of course - not advocating it! Don't drink at all now because of all the painkillers so hey ho, so much for my social life.

I was on Methotrex and Hydroxy but it gave me Cellulitus and I only realizes it when I was in hospital for an operation and they took me off it. I think it must have been something to do with the fact that I have pheriferal neuropathy /cannot spell any of it!/ but I have never heard anyone else having this problem. Hope you do well on it as I think its really good.

Hi I don’t have any experience of methotrexate. I’m researching it now because there’s a strong possibility my rheumatologist is going to get me to try it for Sjogrens. I do however have some experience of adverse reactions to steroid injections. I now refuse these injections because of the extreme reactions I have. It’s interesting to find someone else whose had problems. Not that I’d wish that pain on anyone else but that I’m not mad, making it up or being a baby! I had them in my wrist and elbows and each time they were agony about 2 hours after the injection. I’d have burning, excruciating pain, swelling a raised rash and extreme weakness for several days afterwards and they made absolutely no difference to the original problem!

Hi thank you for ur reply I know exactly how you feel don’t think for one minute your a baby or making it up it’s a very frightening experience and it makes you very wary of popping any kind of drug in your mouth after that! You know and this will sound crazy ! When she gave me the injection my gut was telling me not to have it but you know u need something to calm the pain and help ur illness and you put ur trust in these drugs as they help a great amount of people but unfortunately no one knows how anyone is going to react so we take the chance, I was horribly swollen and had large welts all over my body within a couple of minutes of having it and spent the rest of the day and night on a bed wired up to machines with Drs trying to calm the reaction which I’m very grateful they did, but I now have my gut saying the same thing about methotrexate which I suppose is understandable but at the same time crazy/ babyish but that’s how I feel, I’m doing research at the moment into maybe taking control of my symptoms via diet , keep in touch and let me know how you get on X

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