Planquenil : Does anybody in UK get prescribed... - LUPUS UK

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Planquenil

mistygrey profile image
11 Replies

Does anybody in UK get prescribed Planquenil for Sjogrens or Lupus related diseases?

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mistygrey profile image
mistygrey
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11 Replies
_jenc_ profile image
_jenc_

I am on Plaquenil (Hydroxychloroquine) 400mg. I initially took it for a diagnosis of UCTD which changed to Lupus. Hope that helps. Are you currently being investigated? Take care. :)

Mystik profile image
Mystik in reply to _jenc_

Yes I have been taking it for yrs now

Yama profile image
Yama in reply to _jenc_

Yes my daughter does no iv not heard of investigation why is this should she be worried she has been on it a long time her eyes are being checked at moment due to this drug she is on it for lupus cx

dianeee profile image
dianeee

I do but it's called zentiva now

Paul_Howard profile image
Paul_HowardPartnerLUPUS UK

Hi mistygrey ,

Most people with lupus will be prescribed hydroxychloroquine because it is the safest treatment available for lupus and it can be very effective at treating mild/moderate lupus and being a baseline treatment for more severe lupus too.

Plaquenil used to be the brand of hydroxychloroquine that was most commonly dispensed here, but due to a discontinuation, this brand is no longer available in the UK. Tablets with the same formulation are now available under the name Zentiva.

AmyJ3 profile image
AmyJ3

Hey, I've been taking Plaquenil 300mg for just over 2 months now so I can at least mention the early stages.

So far I've not had a flare but I've been told my MCTD is relatively mild at the moment and I found out very early on in it's progression. I've not had any side effects at all and feel just as I did pre flare. It hasn't taken away the fatigue but my joint pain is less frequent.

As far as I'm aware, Plaquenil / hydroxy can be taken for many years without side effects but we need to just keep an eye out for eye related side effects - though they are very rare.

I suspect I'll be on it for the rest of my life, but so far it doesn't seem to be affecting my life too much other than hopefully preventing flares.

Hope this helps!

johare profile image
johare

Yep Ive been on Hydroxychloroquinne for years now. My dose has gone up and down. on occasions. and initially there were some side effects to deal with, but on the whole its been ok. I cant tell you if it has been totally effective as obviously I cant say how I would have been without it. I need to keep regular opticians appointments, further complicated by Sjorgrens.

Sudi profile image
Sudi

Hi, yes for Lupus,

chrisj profile image
chrisj

Yes I do, been on plaquenil since 2005 after a diagnosis of mild SLE. It was reduced roughly 3 years ago, my rheumatologist was concerned about government guidelines on eye sight. He said to up the dose if significant symptoms came back but I've been reasonably well so far

Greengirls profile image
Greengirls

Hi, I have been on planquenil for many years now, and I have a yearly check up at my opticians where he checks for any anomalies, due to the medication. So far all good. I hope it helps you

LH44 profile image
LH44

Yes...reluctant to take it initially but 3yrs later so far so good!