Canadian Lyme Disease Foundation Bulletin Board

[lookingforanswers]

Hi everyone,

I started Plaquenil with Azithromycin about 3 weeks ago. My vision started to get very blurry. I also had loss of apetite (lost 5 lbs), nervousness, muscle weakness, ears ringing, diarrhea, and dizziness. I stopped taking both medications. Dr. B had told me about how if I had eye problems I was suppose to get my eyes tested, but that was with longterm and a higher dosage of Plaquenil. I looked it up and read about it here. http://www.healthyontario.com/DrugDetails.aspx?brand_id=940&brand_name=Plaquenil

Has anyone else had these symptoms from the Plaquenil? I tried to reach Dr. B, but he must be on holidays.

Thanks,
Leslie

[Mum]

Hi Leslie,

When my daughter first started treatment in 2008, Plaquenil was added for 3 weeks after taking Biaxin for 2 months . She couldn't tolerate the Plaquenil due to nervousness, muscle weakness, increased hair loss, and seemingly increased eye/vision problems. In looking back at my daily notes, she felt pretty crappy overall while on Plaquenil and her brain fog was worse. While at the time we thought this was all from Plaquenil side effects, it may be possible that she was herxing only we didn't realize it.

When she discontinued it and saw an opthamologist to check her eyes, they were apparently okay, although her eye symptoms have always been a problem for her even before the Plaquenil and are still a problem even after 14 months of abx treatment. She has tons of floaters, eyes always bloodshot, strange vision things going on, severe pressure and pain from behind her eyes, and something she calls eye "twisting" behind the eyes. We always worry about her eyes but no answers. I don't think the Plaquenil is the reason for any of her eye problems.

[lookingforanswers]

Hi Mom,

Thanks for sharing that. You are the second person who has mentioned they couldn't tolerate it. I have to think it's side effects rather than a Herx as the symptoms went away after I stopped it. Albeit slow, they went away.

Take Care Leslie

[spaztick]

From what I have read, and from what both my LLMD and family doctor have said to me, everyone taking Plaquenil long-term must be screened for "Plaquenil toxicity" by an ophthalmologist on a regularly scheduled basis.

I started Plaquenil in Oct/08, and I have been screened for toxicity twice, and I have to see the specialist again in Feb 2010.

Your family doctor will refer you to the ophthalmologist for your first screening appointment(s), after which time the ophthalmologist will advise you when your next screening will take place. BC MSP will cover.

Toxicity from Plaquenil is very RARE.
You can read more at http://www.drugs.com/cons/plaquenil.html

[lookingforanswers]

Hi Spaz,

Thanks for mentioning that. I am aware that you need to get your eyes checked, if on this long term, and a higher dose. Thankfully, my eye sight is getting better. It was pretty scary.

Take Care Leslie

[jan p]

Les,

Couldn't a herx go away the same way? If you stop killing the Lyme (with the Plaquenil or anything else) and then your body gets rid of the toxins of the dead Lyme and no more herx symptoms.

jan

[lookingforanswers]

HI Jan,

I suspect it could, but this was a definitate blurring of vision. It started about a couple of weeks on Plaquenil. I also started experiencing nervousness it was around my own family and couldn't figure out what was going on. I had ringing in my ears, weakness (my hands shook like crazy for about 7 days and my whole body was weak, hair loss, weight loss (nothing tasted very good). I'm still not comfortable driving. The vision is better, but not as good as it was.

These symptoms are new and got somewhat better after I stopped taking it. Thanks for thinking of it though.

Hugs Les

[lovetootootoo]

I was on this drug for 3 years to try and reduce my stiff neck and severe joint pain, which at the time didn't know it was caused by LD and docs knew it wasn't arthritis - so they put me on this.

After 3 years, I started getting dizziness and blurry vision and then vertigo attacks. Not sure if it was the Plaquenil cause those ARE it's severe side effects, or if it was just the LD progressing. Anyway, stopped it immediately and a year later the blurry vision is gone but I"m super sensitive to computer screens and fluorescent lights and can only be around them for short bits, otherwise they cause vertigo attacks.

[lookingforanswers]

Thanks for replying Love. What I don't understand is I was only on it for about 3 weeks. All the side effects I got came on about the same time. *sigh* My vision is still blurry and I am shaky. I am hoping it will all go away.

Take Care Leslie

[2ND]

Hi Looking for answers - when I started Plaquenil, my LLMD said that while on this med. need to have eye exams every 4 months to screen for retinitis, whether I experience any vision probs or not.
Plaquenil made me feel very nauseaus for months but I haven't had any vision probs. Going for first eye exam soon.
I am wondering if your probs. could be something to do with starting combo of Plaquenil and Azithromycin at the same time? Just a thought. Hoping you feel better soon.

[lookingforanswers]

Hi 2ND,

I appreciate your answering and my LLMD told me the same thing. In my case though I was only on this for 3 weeks when the problems started. I stopped it and my vision is getting slowly better.
From what I have read there is nothing you can do if it is Retinitis. You can stop the med and hope that in time it goes away.
I do want to go to the eye doctor, because believe it or not, I have eye lashes stuck in both eyes and they are driving me nuts. I wish I could take my eyeballs out and wash them

Take Care Leslie

[2ND]

Hi Lookingforanswers:
Eyelashes stuck in both eyes!!! I bet it's driving you crazy. THe English are always saying "I'd rather stick pins in my eyes than.....(something they don't want to do) Yes, I am hoping you go very speedily to an eye Dr. and get those removed - surely that can be done??? That sounds very painful

[lookingforanswers]

Its very irritating. I've always had problems with my eyes in the form of conjunctivitis. It was part of what led me to Bartonella. That, and the papular type rash. Thanks for the support! I appreciate it.

Leslie

[Nancy D]

Hi Leslie,

I just started Plaquenil 3 weeks ago myself (along with Zithro and Flagyl) -- this week I had a major herx that included blurry vision, nervousness, muscle weakness, ears ringing, diarrhea, and dizziness and exteme fatigue.

I do know that it was a herx since my symptoms are in a very regular 4 week cycle and it was my very symptomatic week. In fact it was almost my biggest herx - like when I first started abx.

Herx is now over - and vision is improving. I feel much better already. Today my energy levels were good - but I may pay for that tomorrow! I took a detox bath (1 cup each of Epson sodium chloride, soda, sodium chloride and aloe vera juice for 1 hr while drinking 1 quart warm ginger mint tea! - that worked wonders - it was the first time I tried it)

I too get conjunctivitis and various rashes- hmm Bart? Could be the answer for the relapses! Will have to look into this!

Hope your eyes are better!

Take Care,
Nancy D

[lookingforanswers]

Hi Nancy,

Did your vision get progressively worse? Mine was slow leading up into the 3rd week. What happened was my vision got worse each day and the nervousness hit, along with extreme muscle weakness, hair loss, weight loss and my ears rang continously. The muscle weakness was happening around the 2nd week. I shook like crazy and am still a bit shaky. It wasn't something that all hit within the 3rd week. It was a gradual thing. Just trying to get a feel of whats going on?
My vision is not a 100% yet, but is better. I'm glad that yours got better! It's scary!

Thanks,
Leslie