psoriatic arthritus and methatrexate

Posted , 3 users are following.

hi, i was diagnosed with psoriatic arthritus two years ago and was prescribed MTX 18 months ago after trying steroids and naproxen, iv had loads of side effects including depression, hair thinning and mouth ulcers, i was switched from mtx pills 20 mg to methaject 20mg three months ago after discussions with specialist about not feeling any better and struggling to walk. Three weeks ago i had a nuclear dynamic bone scan which has revealed significant further deteriation of joints, im currently waiting to hear off speciaist has hes been on holidays but my gp lightly discussed results with me. 

SO i guess methatrexate is not working for me, I feel hopeless and dont feel as if im getting anywhere with doctors, i am 41.

Does anyone else feel the same? or have any advice  thanks linda

0 likes, 15 replies

15 Replies

  • Posted

    Hello Linda, I'm sorry you're having such a rough time.  I have Cicatricial Pemphigoid and am on Methotrexate.  I have been taking it for 7 months.  About 6 weeks ago,  I tarted having very unpleasant side effects and told my Dermatologist that I wanted to come off it.  He asked me to try taking the Folic Acid at the same time as the MTX, instead of the following day.  Everything has been much better since then.  However, I am only on 10mg per week MTX and am currently trying to come off the Prednisolone, so that we can up the dose of MTX.  My liver won't support the 2 drugs at the moment and anything might happen when I increase the dose of MTX

    You could ask your Consultant about taking the MTX and Folic acid together

  • Posted

    hi there yes im already taking 5mg of folic acid daily except my mtx day
    • Posted

      I think the point that my Dermatologist was making, was that you take it at the same time as the MTX and I only take the Folic Acid once a week. 

      There are 2 schools of thought about taking folic acid and previously, I had been told to take it every day, except MTX day but now I take it once a week and from my bloods point of view, everything is ok.

  • Posted

    i am also taking hydroxychroroquine 200mg twice a day
  • Posted

    its a difficult one, my crp is normally 25 and esr around 28, bp all over the place, i seem to be getting the tests done but cant get face time with rhumy
  • Posted

    Is there a specialist nurse in your clinic?  Can you discuss it with her, at least she will have contact with the Consultant.  When do you next go to the clinic, are you going regularly?  It's bad enough having these diseases, isn't it, without having to constantly do battle with hospitals etc
  • Posted

    not enuf really,every 4-6 months, if my condithion was under control i could understand this, but its no where near under control, and worstening constantly, if theres nothing they can do id rather them say
    • Posted

      That is awful Linda. I don't know what to suggest.  Are you a member of Health Unlocked?
  • Posted

    no im not sure what this is
  • Posted

    It's another forum and you can pick up some useful advice there.  I have posted the link and also pm'd you the link
  • Posted

    Dear Linda

    I'm guessing you are based in the UK?  As I understand it, we have to try MTXATE to prove it doesn't suit us before NIHCE will allow us to be funded for the newer more expensive treatment options.

    I'm sorry to hear about your joints.  I already had hip impingement syndrome before I realised I had PA!!  So I'm very sympathetic.  I'm just about coping with a cocktail of MTX, steroids, arcoxia and cocodamol.

    Try arthritis care - they were fab and gave me lots of info and new things to ask for and try.

    Keep strong.

    Lucy x

  • Posted

    thanks lucy, yes wales uk. 

    i saw my gp thurs who gave me some results of a nuclear bone scan i had, they think mtx has stopped the inflammation but i have alot of degeneration,so im guessing this is supposed to be good news lol x

  • Posted

    Hi Linda, sorry to hear about your troubles, I too have psoriatic arthritis and take leflunomide, Methatrexate, folic acid and arcoxia, but this last year have started to feel like I'm loosing a bit more range of movement and also struggled to see the rumi, however having recently seen him I'm being assessed for anti TNF in order to prevent further joint damage. This is the news I wanted but only a good rheumatologist can manage your treatment properly, I think you will be wasting your time talking to a gp other than to get a referral to a better rheumatology clinic if you don't feel you current rumi is on the case. Try contacting the secretary of the rumi directly rather than the outpatients appt line as you can build a rapport with them and I've found mine to be quite helpful in expediting my requests.

     

  • Posted

    hi steve i am in touch with the secetetary now, and she is quite helpful, its an everyday battle for us isnt it, and not getting the correct help just adds to the problems, ill keep u posted =)

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.