how harmful is hydroxychloroquine? plaquinil.. - LUPUS UK

LUPUS UK

31,597 members28,005 posts

how harmful is hydroxychloroquine? plaquinil..

dgleds profile image
11 Replies

Wonder what hydroxychloroquine actually does to your body...Its suppose to Modify lupus or other similar diseases....What if they put someone on the hydroxychloroquine for a long time, then find they don't have lupus etc...

If you don't have a disease..or that disease, then what is the drug hydroxychlorquine modifying in your body....? Modifying means changing...

Written by
dgleds profile image
dgleds
To view profiles and participate in discussions please or .
Read more about...
11 Replies
flo_IarFachYrHaf profile image
flo_IarFachYrHaf

as far as I know it works on several different factors though some of it is a bit of a mystery: it's a mild immunosuppressive, also anti-inflammatory. It helps with the light sensitivity.

so the other question is does it relieve your symptoms? It certainly has made a difference to me, taken an edge off a lot of things. If it doesn't work for you - or you react badly to it then don't take it; but also if you feel or think it is not the best option for you than it probably isn't: the placebo affect is real as is its opposite nocebo.

I've tried to avoid a lot of mediction but have now reached a level of acceptance for the cocktail that I take.

dgleds profile image
dgleds in reply to flo_IarFachYrHaf

No, just curious about what it might do to a persons body if they were put on it for a long time, and then told it was a mistake and they didn't need to be on it...

flo_IarFachYrHaf profile image
flo_IarFachYrHaf in reply to dgleds

It would do the same thing but not improve health I imagine! I think if you took it for 6-8 weeks and your symptoms were not improved GP/consultant would want to stop it.

Paul_Howard profile image
Paul_HowardPartnerLUPUS UK in reply to dgleds

Hydroxychloroquine is generally a very well tolerated treatment with few or no side-effects. It can have a build up in the retina in very rare cases of long-term use (usually many years) but I am not aware of any other potential lasting effects.

dgleds profile image
dgleds in reply to Paul_Howard

Guess Im wondering if it would mess anything up in your body, if they had placed you on it by mistake,..or misdiagnoses...It must be doing things in your body if you need it, but if you didn't need it, whats it doing to you...? I know it helps many for sure!

Paul_Howard profile image
Paul_HowardPartnerLUPUS UK in reply to dgleds

As I mentioned, I am not aware of any long-term effects on the body excluding those very rare cases where it can affect the eyes. The drug itself would leave the system after a period of stopping it.

dgleds profile image
dgleds in reply to Paul_Howard

Not to be a smart arse, but I read somewhere that they have still found it in peoples bodies after 5 years....

dgleds profile image
dgleds in reply to dgleds

...in lower amounts of course.

dgleds profile image
dgleds

Some don't see specialist for 6 months at a time...and if they had mild disease, or rhumetologist was guessing, you might be on med long time...

chucch profile image
chucch

Hi dgleds,

As much as certain med's may help with Lupus and the symptoms, they all have longterm effects. Have a look at this link:

medicinenet.com/sun-sensiti...

dgleds profile image
dgleds in reply to chucch

Thanks chucch :)

You may also like...

Reduction in Plaquinil

due to a TIA. Which changed my taste. I feel tired all the time and in pain. I have a meeting with...

Hydroxychloroquine and Azithromycin.

just like to have your thoughts on the following.....I was diagnosed with Cutaneous Lupus an...

How good is Hydroxychloroquine, and any side effects?

What are people's experiences of taking Hydroxychloroquine? It has been suggested I might begin...

Hydroxychloroquine 🦠

the Covid19 virus . What does it mean for the people who already take this drug , are we protected...

Plaquinil (hydroxy) and tests?

Ok...so you have lupus....and your taking your plaquinil/hydroxychloroquin (sp),...I don't take...