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-   -   What was your experience with plaquenil? (http://www.healthboards.com/boards/lyme-disease/931198-what-your-experience-plaquenil.html)

martin457 12-10-2012 01:44 PM

What was your experience with plaquenil?
 
I just started zithromax 2 wks ago (no change yet) and now my llmd wants to add plaquenil. i've heard some scary stuff about long term vision problems and hair loss and hoping those are exceptions and not the rule. have you taken it and if so what was your experience? did it help? are the side effects common or only in a few here? please weigh in if you have taken this as i am really not sure about it. thx, MM

dganz 12-28-2012 10:31 AM

Re: What was your experience with plaquenil?
 
My LLMD started me with Zithro 1000mg per day. Then she added Rifampin 600 mg per day, then the plaquenil. There was a 4th med, but can't recall what it was. I did have hair thinning, but I think it started with the lyme. I was on all these meds for about 9 months and then finally started having bits of feeling better. Hang in there. It's very much trial. When something doesn't agree, try something else. After being so sick for so very long, I was desperate so was willing to try. Lymies know that it's nearly impossible to live when your symptoms are full blown.

martin457 12-28-2012 01:56 PM

Re: What was your experience with plaquenil?
 
[QUOTE=dganz;5109752]My LLMD started me with Zithro 1000mg per day. Then she added Rifampin 600 mg per day, then the plaquenil. There was a 4th med, but can't recall what it was. I did have hair thinning, but I think it started with the lyme. I was on all these meds for about 9 months and then finally started having bits of feeling better. Hang in there. It's very much trial. When something doesn't agree, try something else. After being so sick for so very long, I was desperate so was willing to try. Lymies know that it's nearly impossible to live when your symptoms are full blown.[/QUOTE]

Thanks! Still no change but I guess it takes a while. Im on a much smaller dose of zithro (only 250 i think)...Are you much better now?

dganz 01-02-2013 10:28 AM

Re: What was your experience with plaquenil?
 
Yes, I'm probably 90%. Still some symptoms linger like the twitching and small tremor and other memory issues, but on the whole it's like night and day. I truly believe the key is the amount of abx you get. If you research lyme, it cannot be treated with small doses of abx especially if you've had it for a while. I was not diagnosed until I had it over a year. Further, I was extremely sick as a teenager and my doc truly believes I had lyme back then. I lived in Connecticut where lyme was discovered. When I had it, lyme wasn't discovered yet. So when I got bitten this time, my symptoms became full blown within 2 months. Had difficulty getting proper diagnosis and treatment. It wasn't until I went to a LLMD, I began recovery. Is a LLMD treating you or a regular practioner/ID? Stay with it and make sure you are seeing some improvement.


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