Reduction in hydroxy = return of symptoms?

Hi all,

Hope you are all doing well?

I have a question about reducing hydroxychloroquine. I was finally diagnosed with Lupus last summer after having symptoms on and off for 25+ years, and started on 200mg hydroxychloroquine for 3 months. After initially causing a monumental, 9 day migraine, I felt some of my joint pain improved. I was then put on 400mg hydroxychloroquine a day for another 3 months, at the end of which I felt pretty good!

However, I was told after being on 400mg for 3 months I should reduce back down to 200mg, which I did 8 days ago and now a lot of familiar 'ill' feelings are creeping back - fatigue, feeling like I'm coming down with the flu (shivery, achy, fuzzy headed etc, but without a fever), a migraine (which I haven't had for about 4 months!), increased joint pain, tinnitus, pain in my neck - the list goes on.

Could it be the reduction in hydroxy? Could it really be noticeable that quickly? Or is it just a 'flare'? I'm tempted to just increase the hydroxy again! I don't have another appointment with the rheumatologist until September. I don't want to feel this rubbish again after feeling so good, but I have no way of knowing if it's the reduction in meds or coincidence that's making me feel so much worse, so I wondered if anyone else had experienced similar?

Thank you :o)

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  • Hello. I really want to reply to post in detail, as I had a similar thing happen to me early on in my diagnosis. I am on my way out now, school run and work, I will reply later on. πŸ‘

  • Yes, I could be due to the reduction in hydroxy & yes it could happen this quickly

    Here is my experience of this:

    Last year my chief of lupus clinic instructed me to stop daily 400mg hydroxy while immunology began investigations into sinister bone marrow related bloods results. Meanwhile I continued on 1000mg myco cellcept (a relatively low dose, but my body weight is low)

    I immediately felt my version of chronic immune dysfunction+connective tissue symptoms increase by several degrees, especially those symptoms related to my chronic vascular neuro-cerebral & Dysautonomia issues. Eg: fatigue, cognitive impairment peripheral neuropathy etc etc. I'm sure these symptoms would've increased even more had I been instructed to stop myco as well. At that time, I'd only been prescribed prednisolone tapers, which also were stopped along with the hydroxy.

    i managed without daily hydroxy & pred tapers for 5 months while immunology tests proceeded. After 5 months, immunology investigations continued, but my chief of lupus let me go back on daily hydroxy because of the increase in my symptoms....and thankfully I did feel an almost immediate damping down of the symptoms that had increased.

    However, much to my regret, I've had to start taking prednisolne daily, because, even though I'm back on daily hydroxy, the symptoms that flared during those 5 months haven't damped down to where they were before I stopped hydroxy. Daily low dose pred is helping to damp these symptoms down somewhat, but my vascular peripheral neuropathy has definitely gotten permanently worse than it was before stopping hydroxy.

    According to reports on research published in the lupus uk mag last year, we now know that hydroxy's positive effects are cumulative... the longer we take daily hydroxy, the more it helps us. Yes, there can be serious neg side effects (e.g.our eyes particularly must be monitored) but hydroxy's pos effects are vvv valuable. As with all our meds, the risk.-benefit ratio needs consideration & reconsideration at regular intervals.

    Despite my symptoms increasing during my pause of hydroxy, I'm glad to have learned hydroxy really is helping me....I had been wondering whether it actually was. And I'm glad the pause has helped immunology during their investigations of my bone marrow dysfunction (which, by the way, have given us, & are continuing to give us crucial info about various aspects of my version of immune dysfunction & how to manage it. Immunology is continuing to investigate & treat me now, in liaison with rheumatology)

    Apologies for going on at such length, but this subject is dear to my heart

    I hope you'll talk to your lupus clinic about your increase in symptoms ASAP. Remember, the refinement of diagnosis & treatment is an ongoing process and close communication between you & your doctors at times of meds adjustments is important to the development of an effective treatment plan.

    please let us know you get on

    πŸ€πŸ€πŸ€πŸ€ coco

    PS whenever I start a new med I go through an adjustment which usually takes weeks if not months & involves flaring of my chronic migraines. But I do mention this to my medics

  • Thanks Coco, I just couldn't believe that I could feel so much worse in such a short space of time! I've upped my meds back to 400mg today and hope I'll pick up again soon. I've also emailed my rheumetologist and GP to let them know.

    You sound like you've got your hands full there with such an intense and diverse set of symptoms. It makes me appreciate that my symptoms are fairly mild in comparison. Thank you so much for taking the time to reply πŸ˜€

  • πŸ‘πŸ‘πŸ‘πŸ‘πŸ‘πŸ‘πŸ‘πŸ‘

    Yes, I know the feeling: these meds are amazing. I spent a lifetime conscientiously managing infant onset lupus via lifestyle stuff mostly, and the fantastic effects I'm consistently getting from lupus meds since I began on them 5 years ago are blowing my mind...am 62, feeling better than I have since my 20s. Yes I am continuing conscientiously with ALL the lifestyle management, but i'm ever so glad to be able to help myself even more by cautiously following my combined therapy lupus prescription treatment plan

    It'll be so interesting to read Wendy's next reply to your question!

    Take care πŸ€πŸ€πŸ€πŸ€

  • You give us hope we can feel better if we get a decent rumatolagihst 😊

  • Hello. Back from school and work. I was dying to reply to you this morning. I can totally relate to your post and yes, it can definitely be the reduction of hydroxychloroquine making you feel like that. I was diagnosed in November 2013 by a private appointment with a rheumy. My GP had done the right bloods for a diagnosis. Positive ANA and Anti-RO. He diagnosed me with SCLE - a sub group of SLE and DLE, so I basically have skin problems and systemic symptoms but no organ involvement. Anyway, he gave me a prescription for 2 x 200mg a day of hydroxy, which I take one in the morning and one in the evening. I eventually saw the NHS rheumy in March 2014 - I look back now and think I don't know how bad things would have got by then, if I hadn't been started on the hydroxy 4 months before. The NHS rheumy was obviously more thorough with her tests and scans, ECGs etc but the diagnosis was the same. She then told me that as I had SCLE and am sun sensitive, that come September/October I could reduce my hydroxy to 200mg a day for the winter months - increase back again in March. I said I thought maybe October, as I was worried about slipping back down hill, but still thought to myself she must know best. She even so far as to say that I could probably just take hydroxy during the summer months the following year and not take any meds at all during the winter months. Ha ha. Well, I reduced my hydroxy in October 2014 and I did indeed go downhill. I think I was flaring September & October due to the accumulative effect summer has on me and then when I needed it, I reduced it. By New Year 2015, I was in bed a lot, not coping and just so well. I upped my dosage once again, 2 x 200mg a day and I wrote to my rheumy to tell her what I had done. She eventually wrote back and said that was fine but she couldn't pull my appointment for a check up forward, so I'd just have to wait. I haven't reduced my hydroxy since. In fact I am currently on steroids and may be starting a complete immune suppressant next month, as I have ongoing skin and systemic symptoms. I flare during winter and summer. I told my dermy recently that I was told that my flares would be sun related and summer only and he looked at me with a "where did you get that idea from". I know that when these meds are started it is all a wait and see thing, there is no exact science with it. And for me my bloods have showed that they are not reliable. I have only ever had positive bloods once and that led to my diagnosis in 2013. Not any since. Yet I continue to struggle. It's a learning curve and I guess we will continue to learn and develop an understanding of our own version of lupus for the rest of our lives. So well done you for taking the bull by the horns and upping your hydroxy again. Stand firm. No one knows your body like you. Best wishes. I hope the flare passes quickly.

  • Thank you so much Wendy. Your story reassures me that I've done the right thing. It wasn't until I dropped the dose that I realised how well it was working!

    I don't have organ involvement either, thankfully. I'm so grateful for that. I've had some symptoms since I was 21 - I went to Glastonbury festival and got 'sunstroke' and was ill with nonspecific symptoms for about 3 or 4 years after that. I felt exhausted all the time, depressed, often feverish, I put on 3 stone in weight, developed a classic Malar rash on my face (but wrongly diagnosed as Rosacea), joint pain (no more high heels for me!), general hair loss, frequent migraines, etc. Obviously, no one thought of Lupus at the time and diagnosed me as a general malingerer. When I had my son at 25, most of those symptoms went away and I spent 16 years feeling not too bad. Then I developed gynae issues and thought the fatigue and migraine that developed around the same time were gynae related, but now it seems they were to do with the Lupus 'returning'. Having a hysterectomy 2 years ago triggered a big flare and that's what led me to be referred to the rheumetologist last year and being diagnosed.

    My whole family has autoimmune issues - my mum had Crohn's (thankfully I don't have that!) and my dad had psoriasis, carpal tunnel syndrome, rheumatoid arthritis, hashimoto's and pulmonary fibrosis - my rheumy thinks he may actually have had Lupus, but because he was a man he was never tested. His brother had all the same ailments and their sister has temporal arteritis and was diagnosed about 10 years ago with Lupus too.

    Anyway, enough of my rambling on - sorry, don't know where that all came from really.

    Thanks again Wendy, much appreciated πŸ˜€

  • That's the problem with this disease, all of us are so different, different back grounds, different triggers and different symptoms, I can see why it would be a difficult thing to diagnose and get the treatment right for every individual. It takes a doctor who is willing to listen to you and not just blood tests to get it right. I hope your rheumy is a good one. If they listen to you and want to help that is half the battle. I have recently found myself a great dermatologist and he is really helping me. Best wishes. And keep us posted on your progress.

  • Agree with coco and wendy, I was also informed to reduce hydroxy as well for the winter months and my symptom's started creeping back and I thought it was just me not the lupus, so responding quickly will help, certainly helped me. feel better soon. Thanks coco about the information about your experience and studies good to know that are medication is more positive than negative...ml

  • Hi there - I am on 400mg hydroxy daily and feel great - very much improved. I have read that those on hydroxy tend to live longer than those who arent. Also it has a cumulative effect of improving - some people say nine months. I have been on it now for 4 months and feel very much improved. I do get a low grade "flare" occasionally but I take Celebrex or Ibprohen and recover well within about 24 hours. But otherwise my hands (spent 3 months sleeping in splints, feet, neck pain (sleep in a neck support) have all but disappeared. It takes time and if you are clearly demonstrating that 200 is too low go back to your doc or specialist and get the dose increased. I now have no real side effects and just feel better and better. So worth taking the right dose.

    All the best

    Nixta

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