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?
Posted by sutherngrl (Member # 16270) on :
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.
Posted by seekhelp (Member # 15067) on :
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. Posted by gmb (Member # 23562) on :
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.
gmb
Posted by geo (Member # 18333) on :
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
Posted by sillia (Member # 23994) on :
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.
Posted by ktkdommer (Member # 29020) on :
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!
Posted by apljack (Member # 14233) on :
Get eyes checked at 30 days and then do whatever your optometrist recommends.
Posted by Igor's mom (Member # 29191) on :
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....
Posted by Bugg (Member # 8095) on :
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....
Posted by bcb1200 (Member # 25745) on :
I did amantadine instead of plaquenil.
Posted by Razzle (Member # 30398) on :
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.
Posted by hurtingramma (Member # 7770) on :
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.
Posted by Bugg (Member # 8095) on :
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?????
Posted by Bugg (Member # 8095) on :
up
Posted by 0ldman (Member # 22101) on :
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.
Posted by migs (Member # 16496) on :
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.
Posted by hurtingramma (Member # 7770) on :
Bugg, I only weigh 108 lbs and I take 400 mg Plaquenil a day, along with Biaxin. It hasn't killed me yet
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