Flare, flare, go away

So I posted that hydroxychloroquine was magic for me but over the last couple of weeks I've been hit with it all again. I thought HCQ had fixed me and that was that. I was 5 days without meds but I've had many days of flaring now.

I'm struggling to work, sleep, live properly. I know I only have mild RA (and seronegative and no inflammation markers) but I had a glimpse of a normal life and want it back (even with the side effects of no immunity).

Rheumatology apt in a few weeks. Will they give me a steroid injection if I ask for one? Are there any cons of getting this?

Also I've always assumed my back pain was mechanical and not related to the RA but the pain was much reduced when HCQ started working and has come back with a vengeance with this flare. I thought RA didn't affect the back/spine??

So so so fatigued .... :(

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  • Hydroxy doesn't have a major immune suppression effect - it's an anti malarial drug rather than one that targets just the immune system. So I wonder why you are feeling that your immune system is so greatly reduced? are there other reasons why your systems are low perhaps? Are you looking after yourself well?

    Anyway, I still flare on the drugs, just tends to be shorter and less severe than it was pre-drugs. I have come to the conclusion that it's a fact of life with RA, and I know that if I overdo things too much then I will feel the consequences eventually.

    Hopefully your rheumy appointment will come up with some solutions for you. With me, I started on me drug that worked great for months, but then became less effective, so a second drug was added. Again worked great for a while, but then had to add a third. And then had to increase doses. But that combination worked and I've now been pretty stable for years and officially in remission for the last year.

    And I was given steroid injections every few months until I stabilised, and no majors cons from having them.

  • I was told it does target the immune system, but not as much as the others. They didn't put me on other meds because my wbc was low to start with. Blood tests showed the levels dropped more on HCQ, and after chemo a few years ago I know the signs of having hardly any neutrophils! I was also hit very hard by a cold which quickly developed into a sinus and chest infection.

    I suspect chemo just caused irreversible damage to my immune system/blood/bones. And I reckon it triggered RA too. There's always a fear that my poor blood counts indicate something serious like cancer again. I'm beginning to worry about this in relation to my back pain too.

    If my wbc prevent me having other dmards or other treatments I hope they'll try steroid injections.

  • No wonder you're worried! Back pain is of course the most common problem around, usually for mechanical reasons. Mine is secondary osteoarthritis, but I do blame the RA for encouraging this. But with your history it's well worth asking so I hope your GPs are sympathetic to your concerns.

    It's interesting that we're each told something slightly different, as I was clearly told that Hydroxy doesn't have the immune suppressant effect some of the other dugs have but targets the immune system in a different (unknown) way.

    But I hope they can find something that will suit you as even tho' steroids are great in the short term they're not ideal as a long term solution.

  • Hi Pollymolly

    Just out of interest , you say you were 5 days without meds?

    Do you mean you stopped taking anything?

    Manda X

  • I stopped HCQ - I ran out and my GP couldn't prescribe them and my request to the rheumatologist wasn't passed on, etc!

  • Hi pollymolly, I am also sero-neg with no inflammatory markers, diagnosed (just 4 weeks ago) with 'low level' IA. Personally, I think the idea of having 'mild' IA is like being 'a little bit pregnant'! If people like you and me are flaring and/or uncontrolled, we can be in a worse state than people with more 'serious' RA, so the distinction seems pretty meaningless.

    I am also being treated with HCQ (which probably hasn't started working yet), and was given a steroid injection right at the start. For me, the steroids have been fantastic - almost miraculous. Swelling the rheumy didn't really even believe I had has now gone, and my pain has dropped by about 70%. My IBS has gone and other symptoms are much improved. Not everyone has such a good reaction to steroids, but I would say it's definitely worth a try.

    I hope your flare subsides soon - with luck, it won't take too much longer for the HCQ to build up again...

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