Efficiency of Plaquenil in treating symptoms

[NorthAtlantic]

I have recently been diagnosed with Sjögrens and, from what I understand, it seems likely that I will be offered Plaquenil. I would like to find out what other sufferers think of this medication, the advantages and pitfalls. I know for instance that there are certain risks linked to damage of the optic nerve but I suppose I would like to know how efficient it is in treating symptoms such as dry eyes and also the burning sensations experience during flare-ups of the disease.

Many thanks

[smileyface1]

I have Sjogren's Syndrome, and I took Plaquenil for about a year. It really helped me a lot to feel better. After about a year of being on it. it made me extremely sensitive to the sun and I had such severe problems with my skin that I decided to get off of it. I have thought about taking it again , because I felt so much better on it, but the skin problem was really severe. After you've been on it a while, apparently that can happen to some people. I hope you have luck finding the right treatment. It's very frustrating.

Janet

[Cjack29]

Hi NorthAtlantic

I started on this medication when the symptoms got worse for me, which were headaches, eyes stinging if smoke came near them and the worst for me was the dry mouth. I couldn't get through a conversation without having to have sips of water and if I didn't the dry mouth then felt like my throat was closing up. The tablets helped ease this. I still have the dry mouth whilst on them but it's not as bad and it's manageable, so for me it works. I have been on the tablets for 2 years now and don't think they work as well as they did but I think thats because I have lupus aswell now so have other symptoms/medication I am currently on aswell. For the eyes, I just get regularly eye checks and mine have been ok but I am aware the plaquenil can do damage. Everyone's symptoms can differ so it's sort of like a trial and error process to work out if it works for you.

[Christine_Dube]

I have been on Plaquenil for several years. I do not find it helps for my dry eyes or burning sensations, but it did help my fatigue a lot!

[Cal66]

Hi

I'm new on the sjogrens site but I am on the lupus UK site & NRAS.

I was on plaquenil, for almost 20 years for Sle & RA. Though it helped with my lupus, but it did not help with my Sjourgins.

Last year I was diagnosed at the Eye Infirmary with Toxic Retinitis, even though I had annual eye tests at opticians. This came as a great shock to me & still is. I was immediately taken off Plaquenil & told I must never have it again or I will go totally blind.

At the risk of sounding overbearing please be extremely careful & have 6 monthly eye checks.

[NorthAtlantic]

Many thanks to all for these helpful comments. What you describe is pretty frightening Cal 66; I'm glad they acted in time to save your retina.

Finally they are not putting me on Plaquenil for the moment for this and other reasons.

Btw, how did your lupus manifest itself? I suppose I should start looking out for this...