Hello. I was diagnosed with Lyme/Bartonella many months ago (I got sick March 2008)
and have been seeing an LLMD. I currently take 300mg/day Doryx, and this has helped tremendously.
My LLMD now wants me to add Plaquenil to my treatment to drive the Doryx deeper into my system, but I am very concerned about its safety.
I have read many issues about vision problems and nasty side-effects. Frankly, I am scared to take it.
I would be very grateful if people would offer and information or advice. I want to follow my LLMD's plan, as she knows best, but I am worried.
Thanks so much! I hope everyone is doing as well as possible!
jwick25
[ 02-01-2009, 08:38 PM: Message edited by: jwick25 ]
Posted by mandy614 (Member # 16524) on :
Hi
I've been taking plaquenil for 8 months. It was a tough drug at first but now I have no problems with it. I have had light sensitivity but I attribute that to lyme and co's.I think it has helped me.
Good luck.
Posted by Tracy9 (Member # 7521) on :
Vision problems are extremely rare, but you do need to get your visual fields checked before or shortly after treatment begins.
My only side effect is ringing in the ears...very annoying, but I can live with it.
Posted by Lymetoo (Member # 743) on :
quote:Originally posted by Tracy9: Vision problems are extremely rare, but you do need to get your visual fields checked before or shortly after treatment begins.
most have no problem
Posted by jwick25 (Member # 15190) on :
Thanks so much to all of you for the information. It's funny because on other sites, I have seen comments from so many people with vision issues.
Does anyone happen to know if the side effects stop/reverse once off the drug (ringing in ears, etc.)?
I've heard a lot about hair loss, terrible rashes, vision impairment, etc.
Thank you! I wish you all the best! Any other comments are greatly appreciated!
Posted by shazdancer (Member # 1436) on :
Call your healthcare provider if you have vision or hearing problems, and get to the ER if you have an allergic reaction.
-- Sharon
Posted by tainabell (Member # 18270) on :
I am on plaquenil. I was itchy at first, very very itchy. But that has passed now and I'm doing great. I wouldn't worry about it.
Posted by keltyl (Member # 14050) on :
I've been on Plaquenil for 6 months with noo problems. I take 200 mg 2x a day.
Posted by Tracy9 (Member # 7521) on :
The ringing of the ears did stop when I stopped taking the Plaquenil.
Posted by EyeBob (Member # 12572) on :
The chances of having plaquenil toxicity is pretty rare. As an optometrist and a lyme sufferer, I have seen people taking plaquenil, even at higher doses many, many times over the years. I have literally stopped worrying about retinal issues. I still screen for them, but I've litereally only seen 3 cases in 16 years of practice. FWIW, I take it on-again and off-again when combined with clarithromycin. My LLMD is really cautious about that stuff despite my own reassurances to him.
For further reference, here's just one of many studies. It's an oldy, but a goody.
Incidence of hydroxychloroquine retinopathy in 1,207 patients in a large multicenter outpatient practice G. D. Levy, MD 1 *, S. J. Munz, MD 2, J. Paschal, MD 3, H. B. Cohen, MD 4, K. J. Pince, MD 2, T. Peterson, MD 4 1Kaiser Permanente Medical Center, Bellflower, California 2Kaiser Permanente Medical Center, Anaheim, California 3Kaiser Permanente Medical Center, Bakersfield, California 4Kaiser Permanente Medical Center, San Diego, California
*Correspondence to G. D. Levy, Department of Rheumatology, 9400 East Rosencrans, Module 3100, Bellflower, CA 90706
Funded by: Kaiser Foundation Hospitals, Southern California Region
Abstract Objective. To define the true risk of hydroxychloroquine (HCQ) retinal toxicity by studying the largest single group yet evaluated. Methods. Retrospective chart review of all patients in the Kaiser Permanente Medical Care Program, Southern California Region, who had HCQ prescriptions filled from 1991 through 1993 (1,556 patients in 11 medical centers). Of 1,207 charts of patients who took HCQ and had documented ophthalmologic examinations, initial screening identified 21 charts (1.7%) that indicated possible HCQ toxicity. Results. We identified 1 patient with definite toxicity (1 of 1,207; 0.08%) and 5 other patients with indeterminate but probable toxicity (5 of 1,207; 0.4%). The incidence of definite HCQ retinal toxicity in patients treated with HCQ at <6.5 mg/kg/day was 0. Conclusion. In HCQ-treated patients whose renal function is normal, routine ophthalmic screening is not indicated if the daily dosage is <6.5 mg/kg. In patients whose daily dosage is >6.5 mg/kg or who have taken HCQ continuously for > 10 years, annual screening may be appropriate.
bt
Posted by Capa (Member # 18930) on :
I have been on Plaquenil for a few weeks and the side effects were tough at first but seem to be improving.
At this point I am experiencing nausea, a bit of cramping, and digestive issues in general and I do believe they are due to the Plaquenil.
Hopefully these side effects will also improve with time.