Newbie Methotrexate Psoaratic Arthritis

Hi!

First post. Diagnosed in November last year with psoaratic arthritis. Currently on naproxone twice daily. Been advised to commence methotrexate. Have had the meds in cupboard for past six weeks. Very reluctant to take them. Family, friends, work colleagues constantly "encouraging" me to take them. Symptoms r getting worse. Need help dressing and tying shoes etc. Can hardly lift anything slightly heavy. To take or not to take??? Help anyone.

George

11 Replies

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  • I have psoriatic arthritis toenail psoriasis - I wouldn't like to say one way or the other. I am scared to take them too. My rheumatologist has tried to persuade me with other DMards I still won't take them. I have managed with ibuprofen and paracetamol for the last fifteen years. Now I am having a very bad flare my fingers, ankles knees are very painful & swollen. I've had it before but not this bad.

    I have been questioning it of course would I have had such a bad flare after 15 years of methotrexate and what would have happened during those 15 years? I might have been worse even had side effects I don't know. Or I might have been pain free and not end up with this awful flare I have at the moment?

    It's so difficult nobody wants the side effects they can be unpleasant? Also. I must take into account the people that have no problem with the drug.

    I do have Osteo Arthritis and Spinal Stenosis and am on a stronger painkiller.

    A post givibg you positives vibes would be more helpful I know. Just to say we are of a similar mind.

    Whatever your decision I hope all works out well for you. Good luck

    Jen xx

  • Seems daft to me not to take meds that might give you NO side effects and put up with pain that is getting worse. Why bother to go to rheumy if you don't take her advise? Try the MTX. If you get side effectsthen stop. At least you will have made the effort

  • You wouldn't think it so daft if you saw the state of my aunt and her hair loss. Psoriasis in the family. Also, you wouldn't think it so daft when they keep upping your dose that is doing nothing and making you I'll, then try other meds that also make you ill? The rheumatologist isn't just there to give us meds.

    I have a good Rhematlogist I have more than just psoriatic arthritis I see HIM for.

  • If like me you've hardly ever taken more than an aspirin before then it is hard to accept these strong drugs. And they do sound scary. Only you can decide, and you have to feel comfortable with your decision. All I can say is that they've given me my life back, and from being nearly completely bedridden I now live a perfectly normal life, and don't have any side effects any more.

    You will be monitored on them, and you can stop taking them if they don't agree with you. I would tend to say if your symptoms are mild and you can manage with the occasional painkiller then you have time to try out other approaches. But it sounds as if the RA is really starting to take hold, so even if it isn't an erosive RA it's going to mess up your life. Would it help you to think about it in six month chunks? ie try it for six months and then see where you are? And alongside pay attention to lifestyle changes to help your body deal with the disease and the drugs.

  • It's not just about pain and difficulty doing things, it's about the risk of permanent joint damage and therefore disability.

    I think if I'd felt well 'in myself' by the time I was diagnosed I might have agonised a bit more about starting treatment. However I did not feel well. In addition to stiff and swollen joints that were making it impossible to walk or even wash without help, I had anaemia of chronic disease, had rapidly lost weight and could stay awake for perhaps 3 hours at most and felt like I was about to drop off my perch. It had taken a few years of misdiagnoses to get to that point but it showed me what the disease was capable of. My knees are permanently damaged as are my feet to a certain extent. In my opinion psoriatic arthritis is, in a sense, more toxic than the drugs. When it's severe it's bad for the whole body, not just the joints and co-morbidities are common.

    I'm sorry to lay it on the line like this but I can't do otherwise with an easy conscience. It is tough deciding to take the drugs, I realise that. However I would add that I've never had a problem with Methotrexate. Or actually I did in that my liver enzymes were raised for some time. As I seem to need Mtx my rheumy sent me for a liver scan to check if it was safe to continue with the drug. The scan showed that my liver is in very good nick. And that was after taking high doses of Mtx for 3+ years. I think it's likely that the majority of people have few or relatively few problems with Mtx but of course, for entirely understandable reasons, those who are having troublesome side effects are more likely to take to the keyboard. If you take the drug you should be monitored with regular blood tests and you yourself would be able to discover whether or not you tolerate it well and whether it helps.

    Whatever you decide I wish you well.

  • Hi George sorry you find yourself in this predicament. I along with the others who have replied felt the same at one point or another.

    I never used to take even a painkiller for anything. I went to the gym 5 times a week worked 50-70 hour weeks, party twice a week and lived an extremely active and normal life of a 26 year old woman. Then PsA struck and it all stopped. I tried Sulphasalazine before MTX and it was vile! Felt like I was car sick all the time and like you didn't want to try suggested alternative of MTX. I also wanted to have a baby so I put MTX off for about 6 months and I really wish I hadn't. The side effects were nowhere near as bad as I had built up in my mind! I imagined all my hair falling out and liver failure however I remember thinking everything has side effects I need to not be in pain anymore. MTX did help in some way to manage my pain. The reason I wish I hadn't put it off is because it delayed me getting the drug I'm currently on by those 6 months. I am now on a biologic called Humira which has given me my life back.

    So whether you take it or not is up to you but you may try it and think what was all the fuss about 😊 Many ppl on here take MTX and really get on with it.

    I got to a point where I knew I had no other choice it's a tough one but I hope you make the right one for you.

    George can I ask do you have skin psoriasis too?

    Best wishes

    Terri xx

  • "The reason I wish I hadn't put it off is because it delayed me getting the drug I'm currently on by those 6 months. I am now on a biologic called Humira which has given me my life back."

    Perhaps you know this already George, but just in case ...... the protocols for treating PsA say we have to try 2 traditional DMARDs such as Mtx, Sulfasalazine etc. before we can be assessed for biologics. It can feel like a crazy, crazy world a couple of months into your second DMARD hoping that it does NOT suddenly and miraculously make a big difference, but that's the established path to the expensive and often very effective bios. So of course the sooner we set foot on that path .....

  • Hi there,, just to say i can sympathise totally with you making this decision. I am right in the mid of this too. have got on fine for so many years now and suddenly told to try MTX and Sulfasalazine just for 3 months each just to get thru the pathway to HUMIRA. Have heard so much good about humira and so much bad about MTX i am scared to take this step.. but really battling day to day so i know i need to do something...

    All the best for you. i guess.... i will probably start MTX next week and if after a week of anything bad i will stop and report it.. if anything happens!

  • Hi George,

    Is it the drug side effects that concerns you? I was worried about taking it too after reading the side effects. I ummed and ahhed for a while before starting it. Had to get my head around a weird disease I didn't know anything about whilst feeling that my body was trying to finish me off. Panic stations! Anyway, reading the Q&A's here helped ~ rawarrior.com/the-1st-dose-...

    Maybe it will help you too.

    Would you feel better if you could take a smaller dose for the first week, to see how it affects you? (Best check with GP or rheumy first I should say here)

    I know we all respond differently to meds, but I was amazed when I took the first dose that the only side effect I had was feeling a little transient dizziness and tired the next day. Have felt worse on OTC cold meds and some antibiotics.

    Ultimately it's your call but personally, I'll take any ammo. I can to knock this disease on the head, it's a stinker! And this is from someone who shys away from taking any kind of meds, even paracetamols.

    I read some stories here of people going into remission, and how joyful they felt, to be able to do things again with the meds, if not MTX, then the next one they tried, or a combo. That's what ultimately decided me to at least give it a try.

    Good luck to you, and welcome to the forum.

    xx

  • In 2000 I had a swollen finger. It turned out to be Psore Arthritis 6 months down the line. I went from Very active sporty to being tired all the time. Unable to walk or lift my hands and arms. I used to lie on a sofa all day then go to bed early and lie there in pain unable to sleep. I did not take any medication at this point. I was then given sulphersalazine, then MXT. I could not take them I had severe headaches and blacked out. I found out I had severe allergies to medication, of various kinds. I was advised to become a guinea pig for Entanacept. I did. Although it has made my allergies worse, it has given me back my life. Instead of going about in a wheelchair when out I could walk, use my hands and arms. It stopped the damage to my joints, but cannot repair the damage already caused when the specialists tried different meds.

    Now 16 years later I can get around although I do have a few problems. But glad I tried the Entanacept even with side effects.

    It is your decision but think what not taking it may cause, as well as thinking about the adverse effects it may have if you take it. Good luck on your future.

  • Im the same way i was diagnosed in March with RA and prescribed methatroxate im very scared to take it but yet its getting very hard to do everyday tasks i go to my first rhemuy appt Aug 2nd so im kinda waiting Until then to decied. Hope everything works out for you

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