Jump to content
ACN Latitudes Forums

Paquenil - has anyone had this prescribed?


Recommended Posts

My 18 yr old DS has been prescribed 180 days of paquenil by Dr. L. It is normally used for autoimmune diseases like Lupus and rheumatoid arthritis. She seems to think it is anti inflammatory, and has added it to his 1000 2x/day Augmentin. She has also added 28 days of Rifampin.

 

Any experience with Paquenil appreciated.

Link to post
Share on other sites

My daughter took plaquenil, while under the care of rheumatologist/llmd a few years back. I thi nk k the doc was giving it for inflammation, but I also thought it was for her babesia infection. It is so hard to link anything to a certain med, as there were so many at the time. She did fine with it, side effect wise.

Link to post
Share on other sites

It is anti inflammatory and thought to be immune modulating. I'm not sure they know exactly what it does. It's used sometimes in Lyme treatment. It's an anti malarial and used sometimes to treat babesia. I took it for 13 years for what is/was thought to be rheumatoid arthritis. It worked very well. So well that I have no joint damage from my RA, dx'd in 1997. My hands look like everyone else's. It stopped my very painful hands and other joints from hurting and relieved the stiffness and apparently kept my joints from damage. I have been off it for 2.5 yrs now. There is a very important reason why you absolutely MUST have an eye exam BEFORE you start plaquenil. It can damage the retinas. I now have plaquenil retinal toxicity and have permanent damage to my retinas from prolonged use of plaquenil. Fortunately, I recognized the damage very early in its course so that while it's annoying it has not affected my vision to a degree that is disabling.

 

My mother was rx'd plaquenil two years ago for Sjogrens. She recently noticed some eyesight problems and stopped the plaquenil and her eyesight has normalized.

 

I'm not saying not to take it but I'm saying it is NOT for extended use. They will tell you it's a rare side effect but as we all know, it's only rare when it's not affecting you.

 

As a side note, it's now questionable whether I've ever had RA. I'm currently two weeks off all meds so that I can have Igenex testing in two more weeks. So far, so good.

 

It accumulates in the retinas, for some reason, which is why it can cause damage.

 

Btw, the eye exam must be done by an ophthalmologist and it is covered by your health insurance. Be sure the dr codes it correctly. This is a well known adverse reaction and recognized by medical insurance vs vision insurance. Eye exams to examine the retinas must be done yearly when on plaquenil.

Edited by nicklemama
Link to post
Share on other sites

My 3 boys took plaquenil for several months. Our LLMD said it was a cyst buster. When I googled that I found mixed opinions, so I'm not sure, but we decided to go ahead based on the anti-inflammatory properties anyway, since we were also dealing with PANDAS and severe joint pains with swelling. I do know that my oldest DS, the one with PANDAS, had a great improvement in phsycial and behavioural symptoms when we added plaquenil in. He had been on combo abx for months before we added it. I was very concerned about the retina side effect, but I've only heard of damage in longer term use, so we opted to give it a try, while paying careful attention to eye sight. (I drove the kids crazy asking every day if they had any changes in their vision.)

Link to post
Share on other sites
  • 7 years later...
  • 3 weeks later...

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now
×
×
  • Create New...