Anyone found a drug that worked after failing on sulfasalazine and methotrexate?

Some of you may remember me from previous posts some time ago. Basically, after years of undiagnosed/uncontrolled psoriatic arthritis, I went onto sulfasalazine in summer 2018, but it was stopped after four weeks when I had an allergic reaction. I started methotrexate in April 2019 and have been on it ever since, but have struggled with side effects throughout (have posted about it before).

I've reached a point where I just don't think I can continue it. I can't live like this. I'm exhausted to the point of hardly being able to do anything for 2 days after I take it, accompanied by bad brain fog and jumbling my words. During those days my mood is also incredibly low and I cry at the slightest thing. That then wears off, and I have a few blissful clear days till I take the next dose and start the cycle again.

I've also been shedding hair like crazy since I started MTX and my hair is now really thin. I know this complaint is pure vanity and I shouldn't care, but it gets me down. If this was the only side effect I'd put up with it.

I've put up with all this because the MTX has worked and I was out of pain for the first time in years. In the last few weeks though I've had a steady build-up of pain and swelling in a finger - a new flare starting.

I spoke to my rheumy helpline today and they've made me an appointment for a few weeks' time. The thing is, I can't take MTX anymore, but at the same time I'm scared to switch to a different drug. I just seem to be one of those people who gets some side effects with any sort of medication - not just these arthritis ones. I've persevered with MTX because I've been worried that they'll try something else and it'll be even worse.

Has anyone had side effects on a couple of drugs but then found one that was better?

I assume it's too much to hope for no side effects at all from arthritis treatment. How do you know when the balance is right - when the side effects are more tolerable than just being in pain? :( I've been so lucky to be out of pain for 18 months, and now the finger that's starting to flare is reminding me of what life was like before. But I'm losing almost half my time to MTX side effects and I just feel like that's too high a price. At least my brain worked 7 days a week before, even if my body didn't!

So, for those who have managed to settle well onto a drug, what side effects do you have? How close to none do you actually manage to get?

Comments

  • Anna
    Anna Moderator Posts: 604
    edited 10. Nov 2020, 15:32

    Hi @pinkteapot and welcome back to the online community,

    I don’t have psoriatic arthritis like you, I have rheumatoid arthritis and I take hydroxychloroquine and naproxen. It took a while to find the right dosage - too much and I was getting infections all the time; too little and it didn’t control the flare-ups. Like you, I despaired at the start of my treatment as the side effects were so debilitating, but after a year of trial, I found the right dosage and so far, things are much better.

    It’s good that you’ve got an appointment with your rheumatologist- they’re the only ones who can really manage your medication so that you begin to improve - and I’m sure you will improve. Below is a link to the Versus Arthritis webpage on psoriatic arthritis that gives information on all the various treatments you can try. They all take time to start working and they all have some side effects but no side effect should be as bad or worst than the disease itself - you’re right to go back and discuss this with the hospital.

    Wishing you all the best - do let us know how you’re getting on.

    Anna : )

  • pinkteapot
    pinkteapot Member Posts: 48

    Thanks, Anna - I’m so glad you’ve found a regime that works for you, and it’s reassuring to hear stories that show it can be done!

    The appointment’s not till the end of the month but I will update, in case it helps anyone else in future. :)

  • frogmorton
    frogmorton Member Posts: 27,642
    edited 10. Nov 2020, 06:30

    It can be done @pinkteapot - of course I remember you - there are loads more meds they can try, but I'm not sure hydroxy is one of them for PsA. Sure i read it somewhere...🤔

    This is a list of DMARDs

    Of course I remember you and wish you best of luck with whatever the rheumatologist suggests you try next

    🤞 let us know what you are going to try.

    Take care

  • Jackie47
    Jackie47 Member Posts: 108

    I find having a depo medrone injection 3 to 4 times a year helpful

  • Jeremy
    Jeremy Member Posts: 3

    Hi

    I have AS, and take Cimzia. I know people who have psoriatic arthritis and they tell me it has been good for their joints and skin and in some cases has gone into remission completely.


    Cheers

  • pinkteapot
    pinkteapot Member Posts: 48

    Update after my appointment on Friday. :)

    Firstly, I have to sing the praises of the guy I saw. I couldn't see a consultant (and was already overdue an appointment with one) because my hospital has lost yet another rheumy consultant and is recruiting. I saw the senior nurse specialist who was absolutely lovely - it was probably the best arthritis appointment I've ever had. He really listened and was happy to answer as many questions as I wanted to ask. The consultants I've had have always been very distant and just want to tell me what to do without discussing it.

    Anyway, I explained my MTX side effects and he said people come off it for far less! So there wasn't really any debate - no more MTX for me. This is my second week 'clean' as I'd already skipped it last week when I saw him and I can't BELIEVE how much better I feel. I knew it was affecting me badly but I had no idea how much. I feel awake and alive and have so much energy!

    Next, I'd decided before going that I wanted a break from any meds for a bit (just a month or two) if at all possible, because I felt so run-down from the MTX I couldn't face immediately trying something new and potentially having to get used to new side effects. But as it turned out I didn't need to have that argument...!

    I only had one sore, swollen finger (the MTX had put me in complete remission for 18 months but in recent weeks one finger had started to flare). The nurse specialist said the next step would be biologics as I've failed sulfasalazine and MTX, but that they wouldn't start treatment with just one joint involved.

    I've had this conversation before as my arthritis is luckily fairly mild, only ever affecting fingers and toes, and initially only one at a time. I was on no treatment for the first 7-8 years because of the balance between treating (but side effects) and not treating (but potential disease progression) in mild cases. I then started on DMARDS when things got bad enough. Right now I'm back below the threshold for treatment.

    And the best news of all - there and then he did two cortisone injections, one in the swollen tendon and one into the joint. I LOVE cortisone injections (the nurse was surprised by my excitement as he was trying to warn me that they hurt haha) - yes, there's an agonising 20 seconds then a day of throbbing, but they work brilliantly on me, and have always previously brought complete relief for a few months.

    I'm under no illusions - I'm sure the disease will build back up like it did before and then I'll end up on treatment again. But for now, I'm totally drug free (with permission to take occasional naproxen if needed for mild twinges) and the cortisone jabs have already taken the swollen finger down and almost back to normal. :D

    I know I am ENORMOUSLY lucky to have a relatively mild course of the disease (at least so far) and that if it was worse, stopping treatment would simply not have been an option. I'm also conscious that the majority on here are in exactly that position so I hope this post isn't upsetting to anyone. x

  • Poppyjane
    Poppyjane Moderator Posts: 395

    Hi @pinkteapot , I am glad that you have finally got an outcome that suits you. As you wisely say your journey is unique to you and this route would not suit everyone , you are also aware that there may be changes in your condition in the future.

    Thank you for your thoughts towards the feelings of other members of the community. it is much appreciated.

    Keep in touch , everyone's experiences are valuable to share.

    Take care

    Poppyjane

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