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Plaquenil quiestion------Plaquenil users please share your thoughts!

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Lupus
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Posted 3/10/2010 2:09 AM (GMT 0)
After 5 months of issues I was diagnosed with mixed connective tissue disease today....course this was suspected from day one because of severely high RNP antibodies??? Well I was put on Plaquenil and forgot to ask if you can have alcohol while on this drug? I drink with friends occasionally, nothing crazy. In the last 5 months I have been on and off steroids and really haven't drank anything. It seems a lot of people here are Plaquenil pros and have been on it for so long. I read the side effects that it can cause...are they common or rare? Any info will be helpful to ease my worries that I get...still getting accustomed to all these prescriptions.
TYTYTY
Lori
Posted 3/10/2010 2:54 AM (GMT 0)
Hi Lori, boy I get the overwhelmed thing. You poor thing you have a grand total of 3 posts. I have well over 2000 and I've been at it on the forum since 2006. I still don't know anything. Ok what I know about this disease compared to what there is about it you could probably fit in a thimble! Half the time I feel like I'm in a room with scientist when I hear them talk.
Anyway it will be overwhelming for a little while longer. As for your question about plaquenil. 4 years or there about. The only side effect I have ever felt was when I realized my legs stopped feeling like lead. and i could see my ankles because my CHF went away. I had no diarea no upset stomach. (not true for everyone though). I do know for certain that it is the plaquenil that helped because I went to an idiot doctor who said I didn't have Lupus and took me off of my plaquenil. within a month I had CHF again and spent over a month in 4 hospitals and a nursing home. I'm just now getting over it of course I went back on the plaquenil and I refuse to see that person in the white coat again. It's been a God send to me and they would have to fight me to get back. I take 400 mil. a day.  It did take the full 6 months to see the improvments though.
Good luck and keep asking questions and sharing feelings it's the only way to get through this.
welcome to the group!
carol
Posted 3/10/2010 3:08 AM (GMT 0)
Hi Lori,

I've been on Plaquenil for 7 months now. I think with all of our meds, alcohol consumption is to be limited. I still have the odd glass of wine or a beer, but that might be once a week at most. If in doubt, just give your pharmasist a call. They can help you!
Posted 3/10/2010 3:59 AM (GMT 0)
Thanks for the advice you two! I have found a great rheumy...three ones later. I am starting to accept the constant confusion that comes along with these diseases. My doctor has told me I am one of the lucky ones with clear cut bloodwork results...I guess mine doesn't wanna hide behide inconclusive tests. Kinda stinks when your trying to work it all out as these diseases vary person to person. Apparently I have mixed connective tissue disease but only have signs of lung lupus as of now. My doctor has told me I am just onsetting and more things will show face later. I am happy this week as I have come of steroids and am okay still...however I can just feel the inflammation/plurisy growing slowly in my rib cage...I keep reading about these "flare ups" people have and wish this was the case for me. However, I always have inflammation...purisy and pleural effusion all the time...it responds to steroids but comes back straight away as soon as I am off meds. At what point has a person had just enough chest x rays? I swear i feel radiated so much in the past 5 months. Never mind the autoimmune issues!
Posted 3/10/2010 4:41 AM (GMT 0)
I've been on Plaquenil since 2002. Was initially told to take with food & have never had issues.

It does have a rare effect on peripheral vision, so it's important to visit the eye dr every year for a test. It's a condition that is reversible once identified, but should be checked for every year or it can become permanent.

A good place to check drug interactions, also alcohol and/or food interactions is www.drugstore.com/pharmacy/drugchecker/druglist.asp

Hope that helps,
Posted 3/10/2010 7:07 AM (GMT 0)
I got diagnosed a little over a year ago, and was not medicated, due to my job, for several months. Then, I went on Plaquenil and loved it! My rheumy told me that either I'd be fine, or I'd be cursing his name into the toilet that night. No problems for me. He also told me that the only other side-effect really is cataracts, so I go get my eyes checked about every 6-12 months to make sure, and like they said, it's reversible if caught early enough.

When I went off it again, I noticed within probably 2 weeks that my body felt better with help.
Posted 3/10/2010 12:21 PM (GMT 0)
I also just started Plaquenil last week for mixed connective tissue...I would love to hear updates from you so I can compare with what is going on with me. I have been asking everyone I know about this medicine. It is mostly the eyes everyone seems to be worried about...my rheumy told me to have my eyes checked in 2 months then every year but after talking to people I may go every 6 months.
Posted 3/10/2010 3:01 PM (GMT 0)
hi there ive been on plaquenil since 2005, its a very much needed medicince with mixed connective tissue disease which i as well have. The only problems i have gotten from it is my eye sight has gotten a little blurry. its important to go to the eye doctor every 2 months. If you ever get pink eye or an irrated eye go to the eye doctor because some medicines to treat it can mix with plaquenil, i learned that the hard way. I recommend going on it, its made me feel better, and if i miss a day from not taking it i can tell a difference.
Goodluck, and sorry to hear you were diagnosed.
Posted 3/10/2010 3:57 PM (GMT 0)
Different doctors say different things about how long between eye checkups, I've seen suggestions from 6 months to 2 years, but never as short as 2 months. Most often they prescribe a base exam within 2 months of starting, then 1 yr exams after that. I use an eye clinic with 9 doctors that has been in business for over 40 years. In all that time they have never seen an issue from plaquenil ...and their client base average age is about 60, so they have a higher than usual number of clients using plaquenil.

You need to see an ophthalmologist (eye specialist for medical and surgical problems) not an optometrist (prescribing correctional lenses), and tell them you want the screening for plaquenil toxicity. They will give you a visual acuity test.

For an easy self-check between exams, you can use this chart. Scroll down after you go to this site until a graph shows up with a dot in the center. Look at the dot with one eye at a time, and if the lines change, then you might need to see the doctor. Instructions & more information is available on the page.

A plaquenil user for over 8 years, doing 12-18 month checkups,
Posted 3/15/2010 12:10 AM (GMT 0)
OKAY...so five days after being prescribed the Plaquenil...I finally talked myself into actually swallowing the first pill. 5 months into this and I am still uptight about drugs! My rheumy dr. told me I may lose weight on this drug...so I am hoping I get to enjoy that side effect. I gained 12 lbs after multiple steroid treatments...yuck
Posted 3/15/2010 2:07 PM (GMT 0)
Glad you finally started it. Yeah, maybe weight loss...I loss weight because I was in the bathroom so much. Wasnt enjoyable. LOL! HOpe you tolerate it ok!!!
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