To Plaquenil or not to Plaquenil?

[wsjkcj1]

I'm at the 5 year mark taking Plaquenil for SS where it becomes more of a concern for the dreaded possible side effect of blindness. I'm considering stopping the Plaquenil to avoid that possibility. Has anyone here just stopped taking it? If so, how did it effect you? I seem to be at a pretty steady place with my health now so I'm afraid to rock the boat but I'm also not sure that the drug is helping and could hurt my vision.

[HollyHeski]

Hi, I am at the 10+ years stage and also worry about my eyes. So far so good.

I have annual checks with eye consultant at my local hospital.

I am on full dose 400mg daily, on checking with my APS & SS consultant recently, they say as long as my weight doesn't go below 60-70lb, this dose is reasonably safe.

I did try a while back reducing the dose to see if I really needed it, pain in my hips came back worse than ever almost immediately, took a while to get back to my normal.

I also do the grid test monthly, just for reassurance.

[wsjkcj1 in reply to HollyHeski]

you've taken 400mg daily for 10 years? when I reached my 5 year mark my Dr. reduced me to 200mg daily and I went from 1 eye check a year to 2 a year. The thing is I didn't notice any difference when I reduced the amount I took so I wondered if that took time like if the drug was built up in your system or not but if your pain got worse right away I should have noticed something by now.

[HollyHeski in reply to wsjkcj1]

Yes, within a few days, the symptoms returned quickly, took weeks to get back where I started.

We are all different, what works for one doesn't work for all.

Glad the lower dose works for you.

[leapingmonkey]

I’m also around 5 years on this, in the UK, having to monitor things myself, thankfully my optometrist referred me to eye specialist (no support from rheumatology) who is going to compare eye photos with ones from a year ago. I want to stop as I’m not sure it’s helping with pain control, I stopped once for a short while & the only thing I noticed was the return of unexplained rash which is unsightly but doesn’t cause pain. I’m hEDS, IA possible secondary Sjögren’s. UK NHS on verge of imploding, so DIY only option.

[wsjkcj1 in reply to leapingmonkey]

I also see an eye Dr twice a year for monitoring so I'm pretty confident they'll catch it if it starts to become a problem but like you I still have the same symptoms that come and go even though I take it daily. Did you have the rash before you started taking it? Did the rash go away right after you resumed?

[leapingmonkey in reply to wsjkcj1]

It appeared pretty much as soon as I stopped, difficult to know whether a flare or withdrawal, that’s why I need to try again. Eventually, once I get on top of things I will start a blog. In the meantime, listen to your body, be kind to yourself xx

[Tally]

I am keen to hear feedback on Plaquenil. Take care please

[Lari]

I’ve been on Plaquenil close to 20 years. I’ve have had no problems. I faithfully go to the ophthalmologist every 6 months. I have Sjögrens. I don’t plan on stopping it.

[merlin136 in reply to Lari]

That’s interesting as I was a lot better on Plaquenil for fibromyalgia lupus sjorgrens but they said three years max in case I went blind !

[Blogg]

I have taken it for about 5 years. Have annual eye checks. On 200 dose per day. With methotrexate stable but if I miss a day I get problems