New Diagnosis

Hi everyone,

I have a new diagnosis of HLA-B27 positive Spondylarthritis, currently affecting my whole body. I have been prescribed Sulfasalazine, which I am terrified to start, despite living in agony atm.

I have a multitude of other health problems, some of which I've been living with for a long time, some of which are still under investigation, and do not want this drug to exacerbate any of these other symptoms.

Can people please let me know their experiences with Sulfasalazine please? I cannot seem to find anything overtly helpful on Google. I have booked to see a private Rheum for a second opinion, just to make sure this is the correct diagnosis and treatment plan for me, and have a list of questions as long as my arm, but would be grateful for anybody's input in the interim.

Thank you so much in advance.

Molly XX

Comments

  • Alansrac
    Alansrac Member Posts: 7

    Hi Molly,

    I have been suffering with RA for 3 years now and have been on Sulfasalazine for the past 2 years, like you I have pain all over not just my joints, I get muscle cramps all over along side with body parts locking up as well. I have found that Sulfasalazine helps keep my flare ups less frequent every 1 to 2 months which is a lot better than one after another which I was suffering from but do I think it’s the right one! I am not sure all I can say is give it a go it might work after you have had your second opinion which I might do myself as well as I am not convinced it is just RA I have either. To many different things going on all at the same time which other sufferers don’t seem to have. I wish you all the best for the future and hope you find some answers.

    Alan

  • Woofy
    Woofy Member Posts: 251

    Hi Molly.

    I have taken Salph in my RA journey this past 3 years. Sadly it didn’t work for me. I didn’t have any side effects as far as I am aware, and I do know someone who takes it and is doing well. Like you I am in pain, which is horrible. I have been on Methotrexate since May last year, and it has just been increased a little two weeks ago. I am hoping when I go to my appointment at the hospital in March, they may add something else along side, or increase it if my bloods are ok. Good luck.

  • @MollyHayward97 hi molly I tried sulfazalazine but every tablet gave me nausea and i had to take 5 daily. I did find certain sweet drinks helped and over the counter anti sickness tablets but eventually I started vomiting so stopped. It did start to help my joint pain though .


    Good luck.

  • @Alansrac hi there. Apologies for asking but when you said some parts of you lock up, can I ask you a little more.


    When I've had the massive flares my foot or knees are pulled into a painful flexed position and I can't move that join for mayb 4-6 hrs . In my knees I place a pillow under them and stay in bed until they realise which feels like winning the lottery as no painkillers will provide that pain relief.


    Does this sound like what you have.


    The reason I ask is the rheumatology team have laughed at me and said they don't understand what I mean. Seems a little odd as I can't be the only person on earth with this.

  • Alansrac
    Alansrac Member Posts: 7

    It is usually my fingers or arms that lock up, but unlike you I can release them by moving them from the locked position with my free hand and arm, sorry that doesn’t really help you but like you the pain is next level until released