What happens next

Have my 12 week review next week after starting hydroxychloroquine. It has helped with some symptoms, mostly fever, fatigue, rash and my hair is starting to grow back. But joint pain and tendonitis is still a major issue. I've tried many many painkillers over the years, NSAIDS, opiates, pregabilin but not really any success, will immunosuppressants be the next step?

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  • Hello Beau

    Current research is proving more & more about the action of hydroxychloroquine. Its effects are cumulative....so long as you can tolerate hydroxy, the benefits accrue with time. My own experience is that consultants tend to give us at least 6 months before beginning to draw conclusions about how much daily hydroxy can help us, and thinking about add-on meds. So the beginning of the trial & error involved in building up a daily combined therapy treatment plan can come months or even years after starting hydroxy.

    Sounds like you've responded really well to hydroxy, with clear multisystem benefits, but significant disappointments. My situation was similar at my 12 week review. At that point I was offered daily amitriptyline and, before long, a trial of a 4 week 10mg prednisolone taper as well. I was very concerned about being on even relatively low dose pred. So I declined this offer. But within 2 years I did accept the offer, discovered how very much such a taper could help me, but that the effects weren't long term. So I was allowed 3 of these 4 week 10mg pred tapers per year. Within a year or so, my clinic offered me daily mycophenolate as well, because we'd clearly proven I needed more immunosuppression.

    So, within 4 years of the start of my diagnostic & treatment process, we'd concocted the cocktail of daily meds that have given me back my life, after 40 years of diagnostic ambiguity & failure of treatment (like you, NSAIDs, opiates etc helped barely at all...other than to turn me into a zombie). At 63, I'm in less pain and feeling more stamina & resilience than I have since my early 20s (turned out my lupus was infant onset: long story)

    At one point, my rheumatologist had me pause daily hydroxy for 5 months...I was impressed to find I really really missed it...the degree of several of my chronic neuro cerebral symptoms increased and haven't reduced since I resumed daily hydroxy. Even so, this experience has helped me, because I still feel concerned about being on such heavy duty daily meds...after that pause I felt somewhat more committed to sticking with my meds long term. Plus I'm advised that the risk:benefit ratio of daily cocktails like mine is more acceptable than higher doses of only 1 or 2 types of immunosuppression etc.

    Meanwhile, of course, my bloods are being closely monitored, which has yielded 1 or 2 surprises...giving v helpful insights re the individual character of my version of immune dysfunction & connective tissue disorder

    And decades of cumulative denaturing of my soft tissues (especially tendons) mean daily rehab physio regimes are a must if I'm to stay on my feet. Plus I'm running a bunch of other multisystem treatment plans from my typical collection of clinics, most of which feature prescription topicals including steroid ointments and immunosuppressant eye drops. And, as of this year, immunology has me on daily antibiotics indefinitely .

    I guess my case & treatments are fairly representative of "moderate" infant onset immune dysfunction & connective tissue disorder in someone my age

    I hope something in there is useful to you

    Please let us know how your appt goes

    πŸ€πŸ€πŸ€πŸ€ coco

  • Thanks so much for your generous reply. I have seen good results from the hydroxy, it's not been the miracle cure it'd hoped for but it did start to work fairly quickly. I find the managing/balancing act of this disease the hardest part to deal with, well that and all symptoms!! If I pace myself carefully, do my 45 minutes of physio and eat my fun free diet every day I feel ok 60 % of the time now. But I'm in my 30s and have two young kids, I want to live my life more fully. I don't want each day to be about successfully making it till bedtime without collapsing! I've had to give up my job due to long commute and stress making me sicker. I used to be a runner and had dreams of completing a marathon, now a days getting dressed is a marathon itself !

    I've had steroid injections into joints in the past all of which have been a disaster, a year ago ended up being treated for shock after my body reacted so badly, took months to recover. So I'm terrified of steroids. I've tried amytriptiline, gabapentin and pregabalin, all helped with sleep but not much else.

    Just feeling frustrated and fearful that this isn't the life it'd imagined!

    Though I'm comforted to think the hydroxy will continue to help as time goes on and perhaps there are further gains to be had.

    Thanks so much, will report back soon x

  • Your descriptions are so vivid...I can v much relate...it's so important you have great self awareness and determination....am sure these made your running possible...and now you are employing all your talents to help your medics find the right personalised treatment plan for you.

    This is hard, but hang in there....evaluate how your lifestyle management + meds do & don't help + log your signs & symptoms...then communicate conscientiously with your medics. Then, if your medics aren't engaging in a way that is standing the test of time & really helping, think about another opinion.

    And please do let us know how you get on

    πŸ€πŸ€πŸ€πŸ€ coco

  • If only some of the people who whinge repeatedly (not on this forum by the way) would take just a bit of responsibility and keep conscientious records to inform their doctors! I know there are doctors who don't treat us a partners - but there are plenty who will. And our attitudes are pivotal very often.

  • EXACTLY!!!! πŸ€—πŸ€πŸŽ‰πŸ₯‚πŸΎ

  • Hello, back from rheumatology today. Dr pleased with how hydroxy has helped and we agreed to keep at starting dose for another 6 months.

    My joint pain is mostly around my pelvis, right hip and right hand, with my left ankle joining in sometimes. Over a year ago I had lots of MRIs and found that I have a large tear to the ligament inside my hip joint the labrum I think it's called. I was offered surgery to repair it but at the time I felt as though I was dying ( no exaggeration!) and turned it down. Rheumatologist thinks if I have the surgery this pain will ease, but I'm too scared to make matters worse. She was concerned about my hand as I can't use it very well without it becoming swollen and red, she also said I had a lump on my ligament and my circulation was poor, my hands and feet are always freezing.

    We agreed no more steroids as my body just seems to launch into panic mode. Also agreed that painkillers and me don't really get on.

    I've been on a restrictive diet for several weeks now due to gall bladder problems, so no dairy, saturated fat, sugar and caffeine and I do think it's helped with joints a bit too. So plan is to stay doing that.

    She also said my diagnosis is" lupus variant mixed connective tissue disease ", how does this differ from just lupus?

    She seems confident I will recover eventually, do people recover from lupus or it's variants ?

    Thanks so much for your time and help

    All best wishes xxxx

  • "She also said my diagnosis is" lupus variant mixed connective tissue disease ", how does this differ from just lupus?"

    It's the other way round I think - you have a mixed connective tissue disorder of some sort (that covers a whole load of things) but your particular version sort of leans towards being lupus-like rather than any other version.

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