METHOTREXATE?

I was recently diagnosed with RA and have some inflammation and pain in a couple of fingers and a wrist and am taking diclofenac for that. I have seen a consultant and she has prescribed MTX. I have had all the X-Rays, blood tests and Ultrasound and I'm good to go! However I have just frightened myself to death reading the MTX leaflet, this is a life changing drug ie no alcohol, no sunshine, hair loss etc, need I go on?

I have not yet 'cashed in' the prescription and just had a telling off from my specialist nurse! I didn't think that my symptoms were that bad but she has said that this is only the start and that I should start the MTX immediately.

Am I being stupid and over cautious?

15 Replies

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  • Sadly, your rheumy nurse is right. You need to attack this thing aggressively in the early stages to stop it from doing damage later on. MTX wasn't an option when I was first diagnosed in the 70s and I now have significant joint damage so, whilst I know it must scare the living daylights out of you, it is a necessary evil I'm afraid.

    As for the leaflet. They have to tell you everything. In reality, we do still have a drink from time to time and go in the sun as well. They just have to cover all the bases.

    I've been on MTX for about 20 years and I'm still here as are many others on this site, so don't let it frighten you too much :-)

    B x

  • Many thanks for taking the time and trouble to answer my questions. Only by asking people in the same situation do I get an honest answer. Seems like a no brainer to me, I'm going to crash on with the treatment and see how it goes. Rick x

  • Yes, that leaflet is scary. But so is RA! The first time I took MTX I was a trembling wreck, and now I pop them down with hardly a thought. And the side effects have been ok. I had some problems in the first few months, but they slowly wore off. Of course it's your choice as to whether you want to take strong drugs, but the potential damage that RA can cause is really, really awful and once the damage is done that's it. I try to balance out the effects of taking strong drugs with living a healthier lifestyle, which seems to work for me. Like others I do have a rare small Drink, but hardly miss it all now. And I am sun sensitive (not everyone gets this side effect) but still spend a lot of time outdoors, just with big hats and factor 50 sunblock.

    All the research says that the more aggressively you treat this in the early stages, the less likely you are to have problems later. And if you're lucky you can even go into remission and then cut down on the drugs as well! Good luck with making your decision but my vote goes to the drugs - they've been a life saver for me. Polly. x

  • Many thanks for taking the time and trouble to answer my questions. Only by asking people in the same situation do I get an honest answer. Seems like a no brainer to me, I'm going to crash on with the treatment and see how it goes. Rick x

  • Hi

    I was diagnosed in Feb this year and I too was on diclofenac for inflammation. I went on the internet to "check out" what RA is all about and I got myself in such a state, literally crying every day and thinking I was going to drop down dead tomorrow lol

    It is very scary, this desease, I am now on anti depressants which help alot. I at first was put on MTX and had to increase my dose by 1 tablet each week until I was up to 8 tablets in one go. By this point my blood counts were "all over the shop" so I was taken off the drugs, and I felt soooooo sick and tired all the time. This went on a couple of time on and off MTX, but my bloods never stablised. After a very traumatic few months I now feel much better physchologically and am now on hydrochlorine (or something like that). I've been taking these for six weeks now and fingers crossed no side effects whatever.

    So, anyway, you are NOT being stupid, the feelings you are having are only natural, its a big shock, try not to be too scared about what you read. Remember everyone is different and everyones symptoms differ. I joined a support group in Northampton and that really helps me, and of course this website, being able to talk to people in the same boat as us.

    Well keep your chin up oh and one more thing, I didn't give up alcohol, just cut down.

    Take care

    Alison

    x

  • Many thanks for taking the time and trouble to answer my questions. Only by asking people in the same situation do I get an honest answer. Seems like a no brainer to me, I'm going to crash on with the treatment and see how it goes. Rick x

  • This is my third week of taking methotrexate - i was also scared to death. i have noticed some hair loss, but symptoms are decreasing, felt a little nausea and at weekends when i take it, i seem to sleep more - but it's no where near as scary as i thought. i haven't had any alcohol since february when all this kicked off - i miss it and i am fed up of drinking diet coke when i go out, but your health and well being are more important than that! i hope this puts your mind at ease.

    Emma x

  • Many thanks for taking the time and trouble to answer my questions. Only by asking people in the same situation do I get an honest answer. Seems like a no brainer to me, I'm going to crash on with the treatment and see how it goes. Rick x

  • Hi I second what everyone here is saying. I've been taking MTX (methotrexate) for 9 months now and Hydroxichloraquine for 4 months and together they have turned my RA round I feel and hopefully stopped significant joint damage occurring. Like you mine was mostly in fingers, knuckles and wrists and was very painful on and off - but it also went for my knees and feet in the beginning so I had experienced the disease's destructive potential more perhaps?

    I do a lot of exercise and eat very carefully and only have the odd drink but I'm often in the sunshine as I feel vit D is very important living in the extreme north of Scotland as I do - and this keeps me feeling healthier and better than I have in years and compensates for potential toxicity of the drugs too. You will be well monitored on this drug and the sooner you start it the more chance you have of having RA halted early in its tracks.

    I haven't had any sunlight sensitivity at all although I did when I took Sulphasalazine (another DMARD). I did experience extreme nausea when I went up to 7 pills so am back down to 6 now with no side effects at all anymore. I think these side effects wear off for a lot of us as we get used to taking this drug. The paperwork that comes with the drugs is always a frightening read because it presents the worst case scenario to cover the pharmacutical companies backs. If you google RA it is also very scary - I wish people who didn't have it would google it a bit more often and those of us with RA a bit less often because the drugs are very effective for many of us now! Tilda x

  • Many thanks for taking the time and trouble to answer my questions. Only by asking people in the same situation do I get an honest answer. Seems like a no brainer to me, I'm going to crash on with the treatment and see how it goes. Rick x

  • Yes I think you're right to crash on - I've just taken my dose after tea and it's like water off a duck's back now - good luck Rick! TTx

  • Good Luck Rick, I had good run of 8 years on Methotrexate. It will be just fine. Positive vibes your way x

  • Good luck with MTX it is scarry and can cause alot of nausea and memory impairment as the dosage rises.

    Make sure you are prescribed Folic Acid to take the day after MTX as thid helps with the nausea.

    I have been taking it for 8yrs and now on 25mg wkly and find the day of taking MTX is a real wash out but after the folic acid the nausea improves.

    All the best, Farjer

  • I felt just the same as you when I was first diagnosed and put on Methotrexate Not being used to taking medication i was terrified. Had a good chat with the consultant and realised I had no choice. He told me leaving the RA untreated would cause more damage than the medication. i did have side effects so had to change it. Am now on Enbrel which has transformed my life. Better to catch the disease early so please don't leave it. All the best xx

  • Hiya omg I am exactly the same as you I put a comment on here Saturday because like you I was and still am (but getting there) brainwashed with the Methotrexate.

    Exactly the same feeling crap over last couple of months after a flu bug always tired not good with two crazy kiddies - wrist ankles and fingers really sore and puffy .... Lots of blood tests later, seeing a consultant, on Metho, diagnosed with RA a complete life change and all in 3months!!! I am 42 have a fab social life with friends etc and like you no alcohol etc it was all a shock! I looked at too many websites and scared myself stupid but after coming on here I realise when it is early stages like you and me Metho treatment can be really effective and I think consultants aim for remission as their call it to slow or even stop the disease getting any worse! The people on here have been just amazing so full of experience and understanding I was so shocked at response. Read my blog and all my questions re alcohol ,side effects etc etc it may really help and good luck I know exactly how you feel Claire ..x

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