Just Joined

Tiswas Member Posts: 21
edited 22. Sep 2015, 14:20 in Say Hello Archive
Hello All
I am a 59 y/o male and I've been struggling for 20+ years, but finally got a diagnosis last year.
Seronegative Inflammatory Rheumatism.

I've been pretty good on the Salazopyrin in general, but suffered a major reaction last week and have been feeling pretty fed up. So, here I am.

Unfortunately (in this case), I find that there is always someone else in the same boat as you.
So, hopefully someone will give me some good advice...


  • [Deleted User]
    [Deleted User] Posts: 3,635
    edited 30. Nov -1, 00:00
    Hi Tiswas,

    Welcome to the forum - I fully agree with you, there is always someone who has the same problem and if you are lucky they may already found the solution!

    If you have any issues using the site do get in touch with the moderation team - always around to help

    Take care
    Mod Yx
  • stickywicket
    stickywicket Member Posts: 27,429
    edited 30. Nov -1, 00:00
    Hello Tiswas. I'm glad you finally got a diagnosis but it was a long time coming. Unfortunately, the sero-negs can be much harder to diagnose.

    I'm sorry you're having a bad reaction to the sulph. (I believe salazopyrin is another name for sulphasalazine.) Have you been taking it long? What sort of reaction did you get?

    I have RA. I take methotrexate and hydroxychloroquine so can't offer any advice, just sympathy. If you re-post on the Living With Arthritis forum you're more likely to get replies from those who are on it. Good luck!
  • Tiswas
    Tiswas Member Posts: 21
    edited 30. Nov -1, 00:00
    Hello & thanks for the welcomes.

    Sorry, but I used the wrong terminology.
    I haven’t had a bad reaction to the Salazopyrin. I've been on them for 16 months and they have really helped.
    What I meant was, I had a really bad 'Flare Up' last week. Bones & joints that have been fine till now came out in sympathy!

    I'll put the full gory details in another topic like you suggested.

  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    Hello, I've been taking sulph since 2002 (it all began in 1997) and my current unholy trinity includes that plus injected methotrexate and injected humira: I do my own injections. I have a sero-negative arthritis (in my case psoriatic) and the joint damage from that has led to osteoarthritis in some useful places. The drugs for the former do nothing for the latter but that's not a surprise. I know from my bloods that the PsA is well-controlled at the moment but I don't feel any physical benefit.

    Have other meds been suggested to you? There are quite a few out there, all doing similar things, but it can take time to establish the best combination - it's unusual to have someone on here who is only on one medication. Many start with one then find others being added which often comes as a shock. I hope you find the forum to be of interest - alas we are populated by those who are struggling - it can be hard cheering someone on when feeling rubbish yourself but we all know how tough it can be living with arthritis. I wish you well. DD
  • Tiswas
    Tiswas Member Posts: 21
    edited 30. Nov -1, 00:00
    dreamdaisy wrote:
    Hello, I've been taking sulph since 2002 (it all began in 1997)
    Hi DD, It started in a vengeance in 1995 for me and I was fobbed off for 18 years.
    I started on Sulph 16 months ago and things (walking etc) have actually improved, in particular over the last 6 months. Up until recently and I have just had the fortnight from hell!
    Have other meds been suggested to you?
    No and I can't even get any pain relief. GP won't give me anything and I phoned up my Rhumey Nurse yesterday and she said that they will not approach it from that angle. But, do blood tests to see what the inflammation levels are and work on reducing that and consequently the pain will go away. I said that I understood that approach, but I needed something to take the edge off in between as it is taking me 10 mins to get socks on in the morning and the pain keeps waking me up during the night, but no can (won't) do.
  • stickywicket
    stickywicket Member Posts: 27,429
    edited 30. Nov -1, 00:00
    I think what the nurse means by 'approaching it from another angle' is that they will either up the sulph dosage or add another DMARD into the mix if your inflammatory levels are not under control.

    You can ask your GP for pain relief. (I don't mean anti-inflammatories.) My rheumatologist never issues pain meds. That's the province of the GP. I hope you can get some and they help.