Sjorgrens and hydroxychlorquinn

Mandy

You need to ring your surgery urgently for medical advice.

The dr may give you a substitute drug.

I assume you are taking this drug for Sjoregrens and not as an anti malarial treatmnet/prophylactic treatment.

Jean

I would try to do it gently, I certainly suggest you tell your GP first or phone your rheumy nurse, before you do. I can only speak from my own experience as I didn't get any benefit from hydroxychloroquine at all! I do know that others in my FB group British Sjögren's find Plaquinel much more beneficial. If you live in the UK I suggest before you do anything that you ring the UK Charity for Sjögren's THE BSSA and speak to Heather. Tel: 0121 478 0222 

The muscle weakness and sight problems may NOT be caused by the drug of course, so please DO talk to someone. Many with Sjögren's suffer all manner of problems. I can understand your concern about your eyes, I felt the same while I was on Hydroxychloroquine but our sight and muscles can be affected by the Sjögren's too! 

Hi Mandy!

I don't know if you have to be weened off it or not.  I remember from your past comments that you were not real  enthused about taking the Plaquenil in the first place.  I remember you were very concerned about your eyes. Could the muscle weakness be a part of your Sjogrens not the meds? Also the problems with your eyes, could it be from the dry eye issues or perhaps another eye condition? You have already invested 4 months taking this drug it takes at least 6 months before improvement is really measureable. Does your doctor seem to think discontinuing is warranted? I really wish you would reconsider whether these side effects are bad enough to quit a drug that has not yet had the time to truly help you. I know in the past i have tended to be Hyper-vigilant looking for negative side effects because I was nervous about taking a drug. I just don't want you to make the same mistake before this drug has time to help you. Many drugs have uncomfortable side effects but not all side effects mean the medicine is having a negative affect on you health. I would seek an opinion from my eye doctor. Ask if the Plaquenil could really be responsible for your eye issues? What improvements have you noticed with the Plaquenil? Are you taking the prescribed amount? I don't want you to give up out of fear (been there done that) Hang in there Mandy and feel better,

Sally

Hang in there a while longer .... My doctor said it takes some people a year. Your weakness and eye problems are probably from the sjogrens not the meds. You are like me I think....we don't like taking meds, and we don't like feeling bad and we don't want this illness and want it to go away!! But it doesn't..... You have to learn to make the best of it.... If you get off the meds and feel better, please let us know! Good luck to you!

I was on Hydroxychloroquine for only a few weeks and had amazing results then I had a massive reaction, rash and skin peeling off so I had to stop.  This drug has a long half life and takes about 2 months to get out of your system so it took me that long for the reaction to clear so if you stop now it will take quite a while to get out of your system.  It can take a long time to feel the benefits so hang in there.

Dont know but even after my reaction I got back to normal only problem was that they gave me uncoated steroids for the reaction which has given me a stomach ulcer.  (this is due to nhs cuts.  They say it makes no difference to have coated or uncoated pills!!!!!!!)  I am afraid I can only comment on myself  sorry.