Psoriatic Arthritis -Sulfasalazine

Lou001
Lou001 Member Posts: 51
edited 3. Dec 2013, 12:32 in Living with Arthritis archive
Hi,

I was diagnosed with PA last year after finishing a course of PUVA for my P.

It started with a swollen thumb and toe, and a very swollen knee.
I was referred to the Rheumatologist and had an X-ray on the bottom of my back which showed inflammation in sacroiliac joints.
They wanted me to start straight away on Methatrexate, however after reading about scary side effects, and the effect it can have on fertility (im 27 and currently have no children) i decided against this, and tried to manage my pain with physiotherapy, cortisone injections and painkillers.

Unfortunately over the last 6 months everything seems to have gotten so much worse, my back is so painful, my hips, thighs and both knees hurt and i have pain in both of my feet.

I had an MRI on my back last month and had the results today, everything shows as being normal & no active inflammation (confusing as the majority of pain is in my back and hips)
I had an x-ray on my knees which showed no damage / inflammation, however blood tests have shown inflammation.

The rehumatologist said they still want me to take medication, and have suggested sulfasalazine which i have agreed to take.

Has anyone else had negative MRI / X-rays but still has a lot of pain. I'm scpectical about taking medication if I dont need to.

Many Thanks In Advance.

Comments

  • dippydoodah
    dippydoodah Member Posts: 350
    edited 30. Nov -1, 00:00
    i can only speak from my own experience but i did start with lots of pain in my feet at the beginning. i was told to just rub them and take painkillers. eventually the pain spread and i was told it is probably osteoarthritis although xrays showed no signs and bloods didnt show any inflammation. for me, it took 2 years before the signs showed and rheumatoid arthritis was diagnosed so i guess it can be a while before things show up?

    i have been on sulfasalazine but unfortunately, it wasnt for me. i had terrible allergic reactions to it and it was stopped immediately BUT i do know of others who have been on it for years without any problems. it really does depend on each person.

    sorry if i havent been much help but i hope you get some relief or answers soon xx
  • Tubby
    Tubby Member Posts: 177
    edited 30. Nov -1, 00:00
    I am sceptical about the drugs (methotrexate, sulphasalzine, diclofenac, paracetamol and the stuff you take to counteract the others). I don't think either methotrexate or sulphasalzine have much effect on me but they tell me to keep taking them! I am told that they help reduce the effects of the disease (PsA in my case) but they don't stop the pain. The only things which reduces inflammation for me is the diclofenac. Methotrexate is also known to help with the joints in your limbs but it does not work well on backs - info from my Rhuemy. HOWEVER, these drugs work very well for lots of people and if they are going to work for you need to start taking them as early as possible as they reduce the progress of the disease.

    I can't comment on the issues around having children and methotrexate but I am sure others will advise.

    There are no easy decisions with these drugs but I wish you all the best with the future.
  • Lou001
    Lou001 Member Posts: 51
    edited 30. Nov -1, 00:00
    Thank you for your replies :)

    My main concern is that nothing has shown up in my recent MRI & X-rays, yet I am in so much pain?! It makes no sense :-/

    Also I don't understand why I am still to take meds when my scans were ok.
  • barbara12
    barbara12 Member Posts: 21,276
    edited 30. Nov -1, 00:00
    Hello Lou001..and I don't think we have met..so welcome from me
    I am sorry I wont be able to help with the meds,but I had a couple of MRIs at different hospitals...and both were read differently...but I think with your maybe the inflammation was active before ... then when you had the MRI it had calmed down.
    If you are worried I would go and gave a chat with your rheumy..its so blinking complex this arthritis :roll:
    Sorry I couldn't help more...please let us know how you get on
  • lululu
    lululu Member Posts: 486
    edited 30. Nov -1, 00:00
    Hi there
    I have PsA, Osteo and Fibro I have been on the Sulpha for @ two years now. My bloods always show inflam. Not sure if the Sulpha was doing me any good I stopped it, by the next time I saw the Rheumy three months later I could hardly move with stiffness and pain. Back on the Sulpha I could feel the change by the end of the first week. I also take Pregabalin and Amitriptyline among others, between them they play around with my head but as I live alone I have only myself to argue with so no problem :lol:
  • Kittkat
    Kittkat Member Posts: 309
    edited 30. Nov -1, 00:00
    Ooh well children wise you have to come off methotrexate for 3-6 months. Sulfasalzine I think you can take in pregnancy. I'd say taking take the meds and get the arthritis under control before kids. I was sceptical of meds now I am work disabled and in pain 24-7. Started off with only one knee now progressed to every joint. If I would have got onto it things may have been different. Take care xx I have psa aswell by he way :D
  • DebbieT
    DebbieT Member Posts: 1,033
    edited 30. Nov -1, 00:00
    Hi,

    I have PsA, OA & FM.

    Wot are your blood tests saying 're inflammation?

    I've been off of mtx for a few months now & I'm in a right state & desperate to see a rheumy for help!! I'm on Ciclosporin for my Psoriasis as everything else has failed, I burn after 30 seconds in a light box, pathetic eh? :roll:
    I was diagnosed with PsA in late 07 & put on mtx in early 08. I'm 43 now & had finished having our 4 children in 94 so fertility wasn't even a consideration for me!! I didn't know that mtx could affect it tho, I thought you just had to avoid getting pregnant for 6 months after you stop taking it, that's to ensure all trace of it will have left your system I believe? Have you discussed the pros & cons with ure GP or a member of the AC helpline team? I think for the medical facts they would be able to answer ure questions regarding fertility more thoroughly!!

    I think as you already know you have got damage, in my opinion, I would definitely be on the side of taking meds!! My pain is currently sky high but my inflammatory markers have never been so low, which just seems ridiculous to me but I've been diagnosed nearly 7yrs now, which is early in the scheme of things, I've been on meds & I've still had quite a lot of damage, I dread to think how I'd be if I hadn't been taking mtx from the start but only you can make these decisions.

    I think with members stories & getting medical advice ul have a more rounded picture of it all to base ure decision on!!

    I wish you all the best, please keep us posted?

    Xxx xxX
  • firestar
    firestar Member Posts: 44
    edited 30. Nov -1, 00:00
    I have also been put on sulfasalazine for PsA and a bit confused about the efficacy of it. there is very little published on it. I have had normal bloods and just a little inflammation on my hands and sacroiliac joint on the MRIs.

    I have found that after 4 months and some not very nice side effects things have settled a bit with some improvement on peripheral joints but apparently it is not expected to do much for my back pain. As I understand it the theory is that it can help symptoms but does not help stop progression of illness. So I am confused whether things have settled down or if the sulfasalazine has been doing something. Unfortunately there seems to be a real trial and error element to rheumatology medicines.

    There is a good you tube video about an hour long on you tube by Dr Arvind Kaul at the Royal Free hospital. He is not very complimentary on sulfasalazine but the video is good if you want to know more about PsA from a in depth understanding as the video is aimed at GPs.

    Another thing to consider is doctors need to try DMARD's like sulfasalazine before they can consider more effective (and more expensive) medications like biologics. At least that is my reading of the NICE guidelines.

    I would recommend if you are not sure about taking something then try and work out why and then express those concerns to your medical team and hopefully they can explain the rationale for them.
    Good Luck
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    I have a friend with PsA which is controlled by sulph and nowt else. This may be because he was put onto the sulph very early on in proceedings but there again it could just be that he is lucky.

    I began sulph after seven years of trouble (my symptoms were not recognised as an inflammatory arthritis-type difficulty) and as a result that was too little too late. I have added all the usual suspects along the way including injected meth, I know that my PsA is well-controlled because my bloods are very good but, due to delays and wasting time failing on meds before I was allowed the 'big guns' I now have OA in my PsA-affected joints, plus fibromyalgia.

    Having children was never an issue, when I was sixteen I was told that I could pass the chronic eczema and asthma to my children but if they missed it then my grandchildren proabably wouldn't. Having lived a throughly miserable childhood it made that decision very easy. All my auto-immune troubles have stopped with me - I guess I've 'cured' arthritis. :wink:

    Yes, the meds sound scary but they are important. You cannot find a strong disease with weak meds. I am on a triple therapy (I am much further down the road than you) but have very little trouble with side-effects. They may be listed but that does not guarantee they will pitch up. I wish you well. DD

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