Reduction of Hydroxychloroquine

[swottish]

Saw a locum Rheumy today and he suggested I reduce the Hydroxychloroquine to 200 mg instead of 400 mg as I have some side effects. I have been on 400 mg for over five months now and had made good progress up to a month ago, but since then I have been feeling worse again. I wonder if it's common that you need to reduce your dosage and not adding anything else? Particularly as you still have some symptoms of Sjogrens Syndrome that hasn't gone away.
My own Rheumy is on maternity leave (she is really good), but her locum didn't seem very interested, so I never got many answers to all my questions. It's good to be able to read this forum and see you are not alone in your struggles with Connective Tissue disorder and to get so much good information that can help. Especially after being disappointed when you have seen a Rheumy. Any help is appreciated.
Best wishes,
Swottish

[cccourt1942]

Swot,
   Gosh...I don't know.  I was started on Hydro-- nearly a year ago.  I was told it would take about 6 months to have noticeable results.  So..at 5 months seems a bit strange---especially from a secondary rheumy.  But that's just my take.  For another condition, I started a med about the same time.  Because of side effects, I have stopped taking hydro and the other drug not once but twice in the last year...trying to figure out the one bothering me.  Well..it was the other.  I contacted my rheumy each time I did this.  I have leveled out on the hydro again (3/4 reduction in the other, btw) and feel as close to my post sjs dx normal.  Oh..I am on 400mg per day as well.  During those times off, I tapered up by taking 200mg per day for 10 to 14 days.  Really couldn't tell any difference between the two dosages.  But that is just me.
    It's a shame your regular rheumy can't weigh in.  Not understanding health care/treatment in the UK prohibits me from knowing if you saw a rheumy within your regular doc's practice or if all are stand alone specialists. 
     Just information on my and this drug.  No real advice.
Good luck.  Read on other's takes and info.  This place is a veritable fount of info.
c3

[Nymph]

Swottish,

I have also reduced my plaquenil from 400 to 300 mg. I was on 400 for three years, and it helped me significantly. I reduced to 300 because I am very small and we want to protect my eyes long-term. I have read that there is a "loading" period with plaquenil for a year after which it can often be reduced. So five months does not sound long enough to me. I did not even get the full benefit until 6 months. But I also don't know what side effects you were have and if they were serious.

BTW, now I have been flaring more and have gone back to 400 for the moment, with my rheumy's blessing.

[swottish]

Thanks to both of you. The side effects I experience is hearing !oss,  irregular heartbeat and nausea. I can cope with the nausea, but am a bit worried about the hearing loss and the irregular heartbeat. I suppose I just have to wait and see what happens with reduced dosage. I saw another thread here about other people on different strength of Hydroxychloroquine and it seem to me that the result are so different for us all. Perhaps through trial and error we will eventually be able to fine-tune the medication and be helped real well. That's my hope anyway.
Best wishes

[Nymph]

Hi Swottish,

I would say that those sound fairly serious. I hope that you find what works for you soon!

[SjoGirl]

I tried Plaquenil twice and had to stop due to side effects such as ringing in my ears, heartbeat issues, nightmares, myclonus (sort of like nighttime seizures, but not a seizure), etc.

I was never on more than 200 mg because I am very small. Both times I stopped I felt fantastic for 1-2 months after stopping the drug. I and several doctors believe it was because I finally had the right amount in my system.

I am working with a new rheumy who says my SJS is under control and my issues are more related to osteoarthritis (for which I'm taking acetaminophen).

We are all different and you have to find the right dose for you or find out if you might need a different drug. It is a long and taxing process at times, hang in there.

[swottish]

Thanks SjoGirl for your input. The more I read about SjS and the treatment, the more I realise it might be a long road until I find the right treatment for me. I will continue 200 mg for now and see how it goes regarding the side effects. I'm new to all this so do appreciate the valuable information there is on this Forum.