Anybody taking Plaquenil for Sjorgens?

Hi katalin59838, I've been taking 200mg once a day of Hydroxchloroquine, (generic name for Plaquenil), since January and my side effects have been minimal really. My hair had already been getting thinner so I'm not completely sure if it's worsened with the Hydroxy to be honest, and I've been suffering with intermittent double vision for years courtesy of my long standing Fibromyalgia. Many of the symptoms of my Fibro and Sjogren's overlap with the chronic fatigue & muscle pain being 2 of them.

The only definite side effects I can say I've had from it is the er..........increase in flatulence about an hour after taking it. It's become a cause for laughter amongst my close family and friends but if they can suffer the fallout from it, so can I lol Along with the increased wind, comes some abdominal discomfort but nothing major and I'm used to a lot of that with the IBS lol. My skin has also become more itchy than it was pre-Hydroxy and have been taking a nighty anti-histamine for that for years anyway but it's not stopping the itchiness now,

?I haven't noticed any difference in my secretions and still have to use artificial tears, salivix pastilles and er......Replens for the nether region problem, but never mind.

??On the plus side, I did notice a slight increase in my energy levels in between the bouts of chronic fatigue after being on it for about 6 months but sadly, the blessed fatigue can still wipe me out at a moments notice.

?No real change with the joint and muscle pains or painful hands and feet, in fact they've been getting worse of late but I daresay my rheumy will get her own way at my next appointment because she wanted to increase my dosage to 200mg twice a day at my last appointment. I was reluctant to increase the dose so she agreed that as my inflammatory markers from my blood tests, (ESR and C-reactive Protein), had decreased since starting the Hydroxy, we'd review this at my next appointment in 6 months. I do however, fear, that because of the way I've been feeling, that she may get her way when I see her in December. Have to wait to see if my inflammatory markers are still decreasing or have stayed the same without any further  improvement.

?Don't honestly fancy the increased dosage because there's a higher risk of problems with the retina, for which I'll have to have yearly eye tests to check on them along with 6 monthly blood tests to also check my kidney and liver functions. I had to have an eye test to check my retinas before starting the drug and was given a letter to pass on to my rheumy by the optician confirming my eyes were fine to start taking it.

?One thing I have noticed a slight improvement with is the peripheral neuropathy, purely because the other day I could actually feel how hot a cup of tea was! My Neurologist was the first person to suspect that I had Sjogren's when I was referred to her re reduced sensation in my fingers and toes, so it was she who then referred me to the Rheumatologist who was able to confirm the diagnosis after more blood tests and an examination. My neurologist did say that the Hydroxy may help the neuropathy and it seems it has! I'll get to find out one way or another when I have my neurophysiology tests repeated in November.

?I do hope this load of waffle has been helpful for you katalin?

?Hippyginger, (a newby to this forum).

I have dry mouth, eyes and some fatigue.  I have decided not to take Plaquenil as these are my only symptoms and the doctor has most of my blood work back and everything is good.  I told her that I would rather wait and see maybe down the road I will develope other symptoms or the fatigue will get worse and then I will take it.  Good luck with your choice!

I test positive for Sjogrens but my symptoms are more consistent with Lupus. The first rheumy I saw really didn't know what to make of my symptoms but prescribed 200 mg per day Plaquenil and I had a good improvement in bone pain and fatigue. My 6 monthly follow up was with a Rheumatologist who notes a special interest in Sjogrens and she said that Plaquenil was of little or no benefit in Sjogrens so I should stop taking it. I lasted two weeks and was bed ridden again. I won't be going back to see her. In December 2017 I decided I'd try 200mg of Plaquenil twice a day and by February this year I felt great - I've even started growing new hair much to my hairdressers surprise. I bounce out of bed and want to ride my bike, play tennis and actually do stuff not just drag myself through the day - I really hope it lasts.