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hydroxychloroquine, any experience?

(11 Posts)
hashtagwhatever Mon 07-Jul-14 23:39:24

I have been given the option to start this with the advice to go and read up on it first by the rheumy.

There was a query as it possibly can be bad for psoriasis which runs in families and my mother has terribly.

More worryingly for myself is actually I have read it can affect the eyes dominantly the retina and cause vision loss?.

Anyone on hydroxychloroquine? How rare are eye problems due to taking the medication.


hashtagwhatever Tue 08-Jul-14 13:03:11

Little bump.

Ziggyzoom Tue 08-Jul-14 13:08:46

I started taking this recently. I was told by the consultant that the eye problems are rare and as long as you get your eyes checked by an optician regularly <reminds self> then they will be picked up early.

I don't suffer from psoriasis, I take if for lupus, so I can't comment on that.

It badly affected my bowels early on (charming) but I obviously got used to it because it is fine now.

Good luck with whatever you decide to do.

Massiveaggressive Tue 08-Jul-14 13:21:04

I'm on 200mg x2 per day (also for lupus- currently only effecting the skin)

I've been told eye test every 6 months and have blood tests every 3 months (but I think the blood tests are to check for potential SLE rather than drug side effects.

my consultant is very conservative, hydro wotsit was the "lightest "option on offer .. Others being steroids and some horrendous sounding drugs which needed weekly blood tests.

I've been on it form6 months and no major side effects (it's also slow acting and I've been told it's designed for,long term use.


hashtagwhatever Tue 08-Jul-14 13:32:09

Thank you both.

I'm not entirely sure what I have at the mo. RA or Lupus seem to be at the forefront

Has it helped with symptoms? My main ones are lots of joint pain especially my feet and bad fatigue.

Massiveaggressive Tue 08-Jul-14 15:31:40

I don't have joint pain but it took 3 months to make any difference - which I was told to expect (not great I know !)

Ziggyzoom Tue 08-Jul-14 16:08:42

My diagnosis is lupus originally Discoid (affecting the skin) but now affecting my joints. The medication has noticeably improved my skin, but after 3 months of taking it, I can't say there is a significant improvement with my joints. Like you, my feet are particularly bad.

I am waiting for my follow-up appointment, so I will see what the consultant says.

hashtagwhatever Wed 09-Jul-14 20:24:20

How long did you both wait to receive a diagnosis?

Cocolepew Wed 09-Jul-14 20:34:33

I've been on it since January, I noticed it helped small joint pain and fatigue. I've had 2 flare ups since being on it (Lupus) and feel worse now than I ever did.
It takes about 6 months for it to work.
Im on 200mg at the moment. As others have said remember to get your eyes checked regularly.

I never noticed and side effects, though my skin is bad at the moment, darkish spots that dont come to a head and stay for weeks.

Lonecatwithkitten Wed 09-Jul-14 21:13:15

I take it when I have a flare of mixed connective tissue disease. Currently I am on 400mg once daily and as I have a side order of immune mediated bursitis I also take 1000mg of naproxen for that. Finally for dessert I have pernicious anaemia with a topping of vitelligo so I am a walking rheumatology department.
My Rheumy has advised me to only ever accept the banded hydroxychloroquinine - Plaquenil as he feels that the different carrier in the generics causes the drug to be less bio avaliable and less effective. When I start the Plaquenil I find it takes about 6 to 8 weeks to help the fatigue gradually disappears, but often the pain does need high doses of naproxen taken daily for a month to break the pain wind up syndrome.

extraneous Fri 11-Jul-14 23:15:43

I'm not on it but it was a possibility for me - I asked an ophthalmologist and he was very relaxed about it. So long as you take the right dose it will not affect your vision.
Sorry to hear about your troubles - my feet were bad once (sulfasalazine worked for me) and it was misery sad Wish you better.

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