Plaquenil

[FiLuSj]

Hi

I have a trifecta of subacute cutaneous lupus diagnosed 30yrs ago, fibromyalgia diagnosed 25yrs ago and recently having a ‘flare’ and now also have secondary Sjorgrens. Until recently I have had no treatment only being told to stay out of the sun which I have done and always worn sun screen. But with this flare the rheumatologist started me on low dose plaquenil because I’m also now experiencing lots of pain in my legs feet wrists hands back and hips, never been so unwell in my life since starting this medication a month ago. Just made the decision to stop the medication and see what happens. Anyone else had any bad experiences with plaquenil.

[maggielee]

Hi I have SCLE and sjorgrens and have been on hydroxy or plaquenil for almost three years, it takes a few months to make a difference, I had an extensive rash, achy, flu like symptoms. It takes longer to really help you. I take with food or at least a glass of milk as it hard on an empty stomach. Some folks mention the brand of plaquenil makes a different. Search for it on the forum and see what others say, also check Lupus UK forum.

Feel better soon. ML

[CoachKB1 in reply to maggielee]

I haven't had luck. Intestinal cramps.

[25clai]

I've had a similar bad experience with Quinoric brand of hydroxycholoquine. I have stomach issues anyway, but this made it worse and I felt like you that everything hurt and ached, a bit like flu. I was going to give up until I found the Zentiva brand, which is much better for me. Maybe worth a try? There are a few supply issues with it in the UK at the moment, but it's supposed to be around again.

[FiLuSj]

Thank you for this it might be useful to explore, at the moment I’m not taking any drugs and feeling very well but I accept it is a risk and one I could live to regret. I guess I will know more as regards my decision when I have my bloods checked in a few months time, until then fingers crossed!

[Hidden in reply to FiLuSj]

I actually only take Minocycline for the RA and SS, but one thing that might help with the SS is Pilocarpine HCL. It helps keep moisture in your mucus membranes. I had an issue with sores in my nose that were there from the dryness. This takes care of that. Also, it helps my eyes, even though I still struggle and have to use eye drops. Sorry this was added to your list - It is no fun for sure. I just keep wondering where in the world I've gotten these things from - ha ha. Sheesh!

[FiLuSj in reply to Hidden]

On a bad day had the same thought myself and sadly it seems once you have one autoimmune condition more generally follow. At the moment I am still well if a little dry but managing my symptoms but I have only been medication free for a few days. Just hoping repeat bloods in 3 months will be stable otherwise I will need to reconsider my decision to be medication free so the feedback everyone is providing may well be very valuable to me in the not too distant future. Thank you for giving so generously of your time time to post. Stay well x

[Hidden in reply to FiLuSj]

Be careful though with going medication free. Sjogrens can be a pretty aggressive disease, causing more than just dryness. But you know your body better than anyone and you can tell when you feel better for not. Take care and try to have a good weekend!