Plaquenil: Hi I have a trifecta of... - The Australian Sj...

The Australian Sjögren's Syndrome Association

2,430 members779 posts

Plaquenil

FiLuSj profile image
7 Replies

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.

Written by
FiLuSj profile image
FiLuSj
To view profiles and participate in discussions please or .
Read more about...
7 Replies
maggielee profile image
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 profile image
CoachKB1 in reply to maggielee

I haven't had luck. Intestinal cramps.

25clai profile image
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 profile image
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!

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 profile image
FiLuSj in reply to

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

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!

You may also like...

To Plaquenil or not to Plaquenil?

I'm at the 5 year mark taking Plaquenil for SS where it becomes more of a concern for the dreaded...

Plaquenil experiences?

prescribed Plaquenil a few years back before I had kids and I was reluctance to take medication...

Does Plaquenil Hydroxychloroquine) help with Sjorgens

I was recently diagnosed with Sjogrens, my rheumatologist prescribed Plaquenil (Hydroxychloroquine)...

Sjogrens and outdoor work

drops in and have sun cream on. I was diagnose when I was 22, I am now 35 I take Plaquenil, which...

Chronic over heating and night sweats anyone?

the heat so have film on the windows to keep glare from the sun out ( I suffer with sun blindness )...