Hydroxy Question

[janetd]

If it takes 12 to 16 weeks for Hydroxychloroquine to start working, does the same apply if you stop taking it.?

[Jude65]

I had to stop taking hydroxychloroquine because it damaged my eyes. I was told it takes 6 to 9 months for the residue of the drug to clear from the body. Unfortunately, its now 9 months since I stopped it and my eyes have not improved so I think the damage is permanent.

I am a rare case.

[JSue]

For me it took about ten days to start flaring, after consultant suggested I lower my dosage.

I have some pigmentation actually on my eyelids which I can live with and the pigmentation I got on my back has seemingly cleared. However I am back on my usual dose because as I said, I started flaring quite soon after lowering my dose. If (Gd forbid) I get retinal probs from it, then I will have to rethink lowering/stopping all together. Hopefully that won't happen, but I do get regular eye exams. My vision is quite poor in my good eye and very low in my bad eye, so it's all a juggling act on seeing well and living well with lupus.

I have heard that any pigmentation side effects (including eye probs) can be permanent.

[Lupylass]

It took exactly 6 weeks for it to stop working for me, after I reduced the dose!

[Hidden]

hi i was taking it for 4 weeks then had to stop taking it as i was covered in hives and was feeling very sick...it took about 3 weeks for the symptoms to stop x

[janetd]

Thanks for the feedback guys, I am amazed how varied everyone is. Nothing is set in stone with Lupus.

[willow80]

I had to come off it after a reaction to the drug, it did take several weeks if not months to eventually stop the symptoms.

[bethsuejane in reply to willow80]

Hello Willow80.

I wondered what your reaction to Hydroxy was?

I started off on Quinoric and began to feel better in just a few weeks. The second month I was given Plaquenil and after 3 days had a terrific, ferocious attack of itching on my legs for several days running, felt sick, faint and generally rotten....had to go onto antihistamines day and night but attacks continued. got my pharmacist to change tabs back to Quinoric but after a couple of days the attacks continued and now on other parts of the body too.

My rhuemy said it wasn't anything to do with Lupus and if anything the Hydroxy would damp down any itching but to get GP referral to Dermo in case.

GP very reluctant and told me to come back in 2 months...I was desperate, espec when he told me a dermo would probably say it was an annoying itch of unknown diagnosis! I went home in tears to spend the rest of the day scratching like mad, hidden away and alternating my antihistamines with hot baths to get a few minutes relief.

6 days ago I stopped taking the Hydroxi and the antihistamines and within 46 hrs the really awful attacks stopped, I still have a number of itches at times throughout the day and night and today I have some little blood spots (petechuai ?) under the skin on my rt thigh. I started taking predisolone that I was already prescribed for next flare yesterday and plan going back to GP tomorrow. if you or anyone else have experienced this I'd be very glad to hear your story.

Many thanks.

[willow80]

Hi Bethsuejane

It sounds like you are in a really bad way and few people are listening.

I have written a response in messages, if you need to ask anything else please do so.

[tintin49]

planequil has given me flares where i had none. its exaserbated my lupus symptoms and made me a zombie. i feel so bad that against my rheumys advice i am stopping this horrendous drug. if its giving me flares then it must be damaging my body. i feel better already still in very poor health but i dont belive in my experience its a wonder drug and i dont trust the rheumatologist as i am sure they will have a cocktail of other "goodies" on offer to experiment on me. one thing about having being diagnosed with lupus has taught me is that the treatment can certainly outstrip the disease.i am on steroids so mabe i am feeling better because of this but there must be anather way. hate this disease..also my gp dont give a dam but one thing he did say was to stop the penaquil as it does not agree with me.

[moss]

interesting. i was told to stop taking mine several weeks ago , as at this point in time my condition is more fibro and the non specific connective tissue seems better controlled. however, i have had loads of head aches and pains i ve never noticed before. my arms feel like led weights. i am unsure if i need to re startt it