How safe is plaquenil ?

[Moonbug]

Hi I've just been put on 400mg of plaquenil and have just been reading up on it and it doesn't sound to safe are many of you on it and how long have you been on it? I have aps no signs of lupus is this right that I'm on it? H xx

[77tiger05]

Well, what I have heard isn't good, but here is a site you can read about. It does have many side effects.arthritis.about.com/od/plaq...

Good luck!!!

[Hilariew930]

I just started Plaquenil earlier this month- have no lupus either. My Dr tried to prescribe it to me months ago and I never started it. I finally did because I have been so tired and awful joint/ muscle pain. It's been rough on my stomach so far, but not horrible. I will keep my fingers crossed... Good luck. I'm interested to hear from others also.

[angela5721 in reply to Hilariew930]

im scared to take plaquenil just was perscribe this medicine ...dont have lupus ...so ur fine on it..

[angela5721 in reply to Hilariew930]

im very sensitive to meds....so kinda of putting it off of taking it....

[jetjetjet]

i take 400 mls a day with no problem, im also so on warfarin. so far so good ,i've been on it now for about 6 months -------------jet

[Hidden]

Been on it about 4 years now and no probs, although at first I lost weight because of stomach upset (soon went away) and that weight loss was a welcome side effect, lol!

[Hidden in reply to Hidden]

And it has been a great help on the aches and pains! I used to be barely able to walk but now just occasional pains and stiffness.

[Annslack]

I have. Been on it three years and there are all sorts of aches and oains I just don't get anymore and no side effects that I have noticed.

[MaryF Administrator]

Hello my 15 year old daughter has been on it nearly two months it has calmed many of her symptoms, ie funny seizure type things etc. It seems to work well alongside the aspirin. Mary F x

[cami]

Been on it 18months no problems! Certainly made me feel more normal!!! taked joint pain away.....No lupus but aps and Sjogrens.

[KJay]

Hi Moon bug, I was on Plaquenil for 2 years (I have Sjogren's too). I was on 200 mg for two years. I tried taking it every day but ended up with awful depression so I went back to taking it every other day. In 2010 I noticed a small grey blob in my central vision in my right eye. I only noticed it when I was reading. I think it was the contrast of the black text against a white background that made it more nocitceable to me. I mentioned it to my opthalmologist who looked at the back of my eye and told me I had to stop taking Plaquenil immediately.

It took about two months after stopping the Plaquenil for the blob to gradually disappear and I found out from the opthalmologist that I was very lucky as very often with Plaquenil once the damage has been done, the eye doesn't recover and your central vision can continue to deteriorate.

It flabberghasted the rheumys and the opthalmologists because they said that they had never had this happen to anyone especially on the small dose I was on. I have read about it happening on massive doses but I was told by Professor Hughes that it was safe and he was gobsmacked too when I told him! I don't wish to worry you as what has happened to me is very rare, but just to let you know that it is probably still best to be vigilant with Plaquenil in spite of what you may be told about it being safe.

[jean48]

I've been on it for 15 years with no major problems.

Jean

[KellyO]

I was on Plaquenil for 6 months, didn't seem to help just upset my stomach so I stopped taking it.

[tassie]

I've been on 400mg daily for 8 years or so and no issues that I'm aware of. You do need to to get a thorough eye exam every year to check and not just the normal eye exam so check with your optometrist. So far no issues for me.

[Elisabeth]

Hi I have been on Plaquenil for about 8 years and it transformed me (have APS and Sjogrens) However it did take about 6 months to start taking affect so i would advise anyone to to stick with it for beyond this period to start to see any effect, Prof Hughes warned me it would take this length of time to start to be effective.Had terrible mouth ulcers, indescribable tiredness and very painful hands and feet and Plaquenil has transformed me. Prof Hughes prescribed 400 mg per day but after one year I eased back to 200 mgs per day as the effect on me had been so good, I have never had any side effects and I have my eyes tested very regularly and have never had an issue. Prof Hughes tells me it is an incredibly safe drug and for me the benefits are huge. I also take warfarin and statin.

[Linda72]

Hi I've been on 300mg per day for the last 5 years. I was advised to have my eyes checked by an ophthalmologist every year.. The recommendation was every year in Australia but now they have told me that is excessive and every 2 years is fine.. it can affect your eye sight and make u blind and the damage is not fixable, hence my doc stresses to get eyes checked. If its picked up early the drug can b stopped ...it is however a very very rare side effect (but an impotant one to make sure its not an issue) and apparently the risk increases with length of time on it and with higher dosages. I ve had my eyes checked twice, and all good, they r able to compare any changes over time also.

[Herb]

I took it for a while many years ago and I reacted badly with acute projectile vomiting and tummy upsets. The consultant wanted me to try it again last year for the tiredness but I said "NO Way!"

I understand the side effects are usually problems with the eyes so you need to have regular eye check ups. It is definitely recommended for APLS. and the tiredness part of lupus.

[nyctapdancer]

There is no way I would take plaquenil, knowing that it can cause blindness. I have yet to ever take a drug that had "rare" side effects without having those side effects happen. And having the dr say "I;ve never seen this reaction before."

Nope, no way. Never.

I believe the autoimmune issues cause increased side effects, but I can't prove that scientifically.

[Barbie]

Love it. Couldn't live without it. 2 yrs now. No side effects. Do see eye Dr every yr.

[babyblooeyes]

I have been on plaquenil for 2 years 200mg twice daily with no major issues other than some gastrointestinal stuff. You should have your field of vision checked every few years though while on it.

[Hidden]

I've been on P for over 2 years...I consider it a "miracle drug".....I felt so ill before my Rheumatologist prescribed P -- I have APS and Unspecified Mixed Connective Tissue Disorder-----the APS appeared under control w/ 320mg Aspirin/daily .... ie my blood was no longer "sticky" when tested------but I experienced an overwhelming malaise....horrible!...felt like I was "drunk" (I don't drink alcohol) combined w/ a serious case of the flu....

Plaquenil lifted these symptoms....I have my eyes checked every 6 months and so far everything is OK.

Oh...I'm 64 years old good luck

[Hidden]

Forgot to add....since my eyes have tested ok for 2 years...I have been told I now only have to be tested 1x/year.......when I take P I also take a teaspoon of peanut butter w/ it....keeps me from having an upset stomach

[jetjetjet]

as far as vision goes, it does affect the eyes, they check my eyes every 6 months -----------------------------------jet

[justine4987]

I took this for 6 months,but my skin was so itchy so came off it.

[happee1]

my doctor put me on it but i turned out to be allergic to it..i did like the idea of no clotting and no inr tests but i wasn't on it long enough to tell you and effects i had..