posted
My LLMD just told me to add in plaquenil said it can cause retinal damage and headache so to start with 1/4 pill and work slowly up. Does anyone out there have experiences with plaquenil? How did it go, side effects?
sutherngrl
Frequent Contributor (1K+ posts)
Member # 16270
posted
While taking plaquenil keep your eyes checked often.
I had a severe pain reaction from it and had to stop taking it. I had severe pain in the facial area, jaw, teeth, etc. It can be a good med for some though.
Posts: 4035 | From Mississippi | Registered: Jul 2008
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seekhelp
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Member # 15067
posted
I'm on 400 mg daily now. I'm going to ask my LLMD to discontinue it. I think it's useless. I used to feel some effect from it (pains in leg and eye issues). I don't feel it offers any benefit and is not worth the risks, especially off Abx.
Why risk eyesight if something doesn't even make you improve. Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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gmb
Unregistered
posted
Plaquenil is probably the lowest risk medication commonly prescribed for Lyme and co. treatment. Eye damage is very low risk. It is given to increase the cellular ph level to help the companion antibiotics work better.
If you're concered, make an appointment wit your eye dr and let them know you'll be taking it ong term. They will then do a base-line exam. Re-test annually or as advised by eye doctor.
posted
LLMD started me on this 2 months ago but I take 1/2th pill twice a day - he specifically mentioned that the dose is 1/2th due to eye issues. He said it opens up the tissues to allow for better abx penetration.
I am feeling better, but who knows if it's from this, doxy, zith or the box full of supplements I am taking. LOL
Posts: 749 | From State full of ticks | Registered: Dec 2008
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posted
I took Biaxin by itself for a few weeks; when we added in Plaquenil to the Biaxin I felt I was getting noticeable improvement (number of good days vs bad days), quite dramatic until it plateaued.
Posts: 261 | From Nebraska | Registered: Jan 2010
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ktkdommer
Frequent Contributor (1K+ posts)
Member # 29020
posted
Plaquenil saved me. I started on it for misdiagnosed lupus. I have been on it for 9 years and have had no problems. It seems to have kept my Lyme in check. I got so much better and have been able to work full time. I get my eyes checked and have no problems. It is a very rare thing from what I understand. I took up to 800 mgs for a year and now have maintained at 400 mgs. I am staying on it through Lyme treatment because I do not want to get worse. Best of luck!
-------------------- Things are never dull. After 3 fighting Lyme, 2 are in remission. Youngest is still sick, age 22. He has new diagnosed Chiari Malformation and Ehlers Danlos Syndrome. Posts: 1366 | From Perrysburg, Ohio | Registered: Nov 2010
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jackie51
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Member # 14233
posted
Get eyes checked at 30 days and then do whatever your optometrist recommends.
Posts: 1374 | From Crazy Town | Registered: Dec 2007
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posted
Thank you all for your input. He is prescribing it based on the Fry Labs blood smear that showed a possible protozoan infection? Said Dr. F uses recommended it to treat the protozoan infection which is protected by a biofilm....
Bugg
Frequent Contributor (1K+ posts)
Member # 8095
posted
Just wanted to remind those starting plaquenil that it can take up to 2-3 months to see ANY improvement on it(this is well-documented by those with RA and lupus who routinely take it)....
...just wanted to make note of this so you don't get frustrated and stop it too soon to notice a difference....
Posts: 1155 | From Southeast | Registered: Oct 2005
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bcb1200
Frequent Contributor (1K+ posts)
Member # 25745
posted
I did amantadine instead of plaquenil.
-------------------- Bite date ? 2/10 symptoms began 5/10 dx'd, after 3 months numerous test and doctors
IgM Igenex +/CDC + + 23/25, 30, 31, 34, 41, 83/93
Currently on:
Currently at around 95% +/- most days. Posts: 3134 | From Massachusetts | Registered: May 2010
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Razzle
Frequent Contributor (1K+ posts)
Member # 30398
posted
I took Plaquenil for misdiagnosed Lupus-like syndrome (pre-Lyme diagnosis) for a whole year. It bothered my eyes too much to warrent the benefit of reduced pain in my hands. It did nothing else for me other than to reduce the pain in my hands.
Nettles (capsules of dried herb) relieved my hand pain and did a whole ton more (all joint/nerve pain disappeared) and did not bother my eyes.
-------------------- -Razzle Lyme IgM IGeneX Pos. 18+++, 23-25+, 30++, 31+, 34++, 39 IND, 83-93 IND; IgG IGeneX Neg. 30+, 39 IND; Mayo/CDC Pos. IgM 23+, 39+; IgG Mayo/CDC Neg. band 41+; Bart. (clinical dx; Fry Labs neg. for all coinfections), sx >30 yrs. Posts: 4166 | From WA | Registered: Feb 2011
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posted
I have taken Plaquenil and it has helped me a lot; both for brain fog and my poor, arthritic hands. BUT, taking it for only a couple of weeks will not do anything. My LLMD usually leaves me on it for 6 months, then stops for a while.
He recently put me on a very low dose of Amantadine (250 mg) and, man, am I herxing! Don't know if I'll be able to tolerate it or not. Anyone else herx badly on it? Mainly I feel foggy and like I have the flu.
-------------------- "Few of us can do great things, but all of us can do small things with great love". Mother Theresa
Bugg
Frequent Contributor (1K+ posts)
Member # 8095
posted
I just started plaquenil myself...into the 3rd week....I've read the initial 2-3 weeks on this med can be rough for patients (not just lyme patients) and people can battle dizziness, stomach upset, and anxiety.....
So far, I have herxed a few, sporadic times on it...increase in leg achiness/flu-like feeling...I assume that's a herx....
The first week I had a headache all week. That's gone. The next week I felt VERY anxious and couldn't put a coherent thought together. Now in the 3rd week the anxiety is lessening and the "dumbness" seems to be getting better....
I've already noticed the pounding/pulsating in my body lessening (I can lay my hand flat on the desk and usually feel the pulsations)....I've also already noticed the cracking/popping in my joints is better.....
By the way, I weigh 117lbs and only take 200mg of Plaquenil a day....my doc and I think that's the right amount for my body weight....he said the side effects from 400mg for my body would be too much.....
I hope others keep posting their experiences with this medication...any helpful suggestions/good experiences?????
Posts: 1155 | From Southeast | Registered: Oct 2005
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Bugg
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Member # 8095
posted
up
Posts: 1155 | From Southeast | Registered: Oct 2005
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posted
My first month or two was miserable. I took 2-3 weeks off and got better then worse. Started back on plaquenil and azythromiacin and started feeling human again. Never stopped taking doxy.
starting back on them was rough for the first week and a half. Seems to have stabilized.
-------------------- Ticks suck. Posts: 140 | From Alabama | Registered: Aug 2009
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posted
It really helped me. Biaxin and plaquenil made me feel GREAT. I thought I was cured but when I cut out the Plaquenil, it all fell down.
Stopped cause but I got a partial tear of the achilles tendon from it.
I can't find any warning of it in literature but it is related to quinolones, which have been implicated in tendon tears.
LLMD at the time said in 5 years he had never seen the eye issues but had seen tendon tears when Plaquenil was added THREE times.
Posts: 410 | From Victoria BC, Canada | Registered: Jul 2008
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