Hydroxychloroquin and pigmentation

[Kirtida]

Hello Folks!
Been quite a while since I got on board... Have been busy with Sjogren's India - our Support Group's activities, helping my sister with her new baby and of course meeting docs, doing follow-up tests and generally concentrating on getting better... The good news is that my docs are happy with my progress and have decided to wean me off the steroids in the next six months. I am still on Azothioprine and looks like will be using it for a long time to come. But I have been able to kick off my tab for high blood pressure too. When I complained of excessive pigmentation around my eyes due to long term use of Hydroxychloroquine... I was told I could get off that too since I am on Azathioprine. However one of my Rhemy's is not too happy about taking the HCQS off my list. I have found that within just20 days of stopping HCQS, the dark areas around my eyes and cheeks have considerably lightened and I do look more like my earlier self with most of the steroid induced puffiness also almost disappearing...

MY QUESTION: Has anyone tried taking a break in the continuopus use of HCQS. I am told it takes about six months for the levels of the drug to build up in one's blood... so I am wondering if I can take a short break... get my skin to look more normal and then get back to the drug without compromising on its organ protecting value. I wasnt to discuss this idea with my doc... but was just wondering if anyonehas a similar experience??

[Scottietottie]

Hi Kirtida 

I know my rheumy likes me to take about a month a year off HCQS (Plaquenil) every year. When I was put onto it I was told to build up the dosage gradually but he said I could judt stop it dead and that I didn't have to taper it off. When I started it again I just started at the dose I'd left off with too. No ill effects.  I haven't had the pigmentation issue but it's something I've read about before.

Personally I wouldn't like to be off Plaq for long because I'm not on anything else and it seems to help with fatigue and brain fog.

I'm glad that Sjogren's India is going well. Nice to see you again.

Take care - Scottie 

[lynnmarie219]

Welcome back Kirtida!

I'm so glad to hear of the success of Sjogrens India and that it is still going strong with your help! What a wonderful project this has turned out to be so wonderful and supportive for so many people!

As far as the question you had, I have not had any experiences with loss of pigmentation while taking plaquenil...and I have been on it for almost  5 years without a break! I would run it by your doctor to insure you get the correct information though.....better to play it safe!

[Kirtida]

Thanks Scottie and Lynnmarie for your responses.
Yes I have put up my question to my Doc and waiting for his response. It is interesting to note that Scottie does take a month's break. Sometimes I feel it gives me a boost to feel that I am off some medication... even if temporarily! But it is like walking a tight rope. The last time I got off my methotraxate for a year.. I ended up with a bad flare up requiring me to be on steroids and Azathioprine for the last two years.

Thanks also for wishing Sjogren's India well... I would like to share what we are doing...but am wondering where I should post this info?
Have a great day!

Kirtida

[lynnmarie219]

I would love to hear what you are doing with Sjogrens India! You can start a new thread under General Discussion.... just press the new topic button like you did for this post!