I have been taking plaquenil also known as hydroxychloroquine since April 2002. I have had no side effects from this antibiotic, and have regular eye exams to be on the safe side.

Here is a post I wrote awhile back, and thought I would post it here as it has some good info on Plaq:

One side effect that worries people is the possible eye damage the Plaq can cause. It is important to have an eye exam prior to starting the Plaq, and another eye exam every 3 - 6 months.

This drug like all others have risks. For me, the benefits outweighed the risk. It is up to the individual to decide if the risks are worth the benefits.

Before taking Plaq, I couldn't use my right hand, now I have 75% use of my hand. The use of my hand is important to me...So as long as my eye check ups are good, I plan to keep taking it.

I have been on Plaquenil since April 1, 2002. I had just had an eye exam 2 months prior, so my LLMD and eye doc didn't feel another eye exam was necessary.

I do however have to go to the eye doc every 3 months for an eye exam. I have had 3 eye exams to date. My last one was just a few weeks ago, everything looks great.

I don't have to go back for another exam until June.

I also wanted to add that my Eye doc (consulted with my LLMD) has me taking Vitamin A & E. I also take Lutein. The eye doc said that they will help protect the eye from the Plaq.

Here is some information I found when I researched Plaq before I started to take it.

http://www.midwestarthritis.com/html/plaquenil.htm

The Plaquenil side-effect of greatest concern involves the eyes. The likelihood of developing Plaquenil eye problems depends upon the dose and duration of treatment. Eye problems are more common when very large doses are ingested and usually take months or years to occur. Eye side-effects from Plaquenil also may be more common in people over the age of 60.

Eye problems related to antimalarial drugs were more common years ago than what is experienced today. There are at least 3 reasons for this. First, Plaquenil seems safer than past antimalarial drugs. Second, larger doses of the antimalarial drugs were prescribed in the past than are currently recommended.

Third, there is a greater awareness of the potential for antimalarial eye problems. Thus, patients have thorough eye examinations more frequently now than was once the practice. With the currently recommended doses of Plaquenil, the risk of eye side-effects is about 3%.

In the past, it was believed that the eye side-effects of antimalarial drugs were irreversible and even progressive after the drug was discontinued. However, with the proper precautions, irreversible or progressive eye changes due to Plaquenil are extremely rare.

Symptoms of Plaquenil eye side-effects include: blurred vision, sensitivity of the eyes to sun light, decreased night or color vision, decreased ability to see objects at the edge of vision, black spots in the vision or light flashes or streaks.

If any of these visual changes occur, the Plaquenil should be immediately stopped and an eye specialist (ophthalmologist) consulted. Since early Plaquenil eye problems can occur without symptoms, regular examinations by an ophthalmologist are essential--even if vision is normal.

It is common to recommend eye examinations every 6 months. If the ophthalmologist detects possible eye toxicity, the Plaquenil should be immediately discontinued

http://www.medhelp.org/perl6/eyecare/archive/54.html

The management of patients on plaquenil has been a controversial subject. Alot of the concerns are related to the problems caused by chloroquine, the predecessor to hydroxychloroquine (Plaquenil).

It was much more toxic to the retina and much more likely to cause permanent visual problems. Hydroxychloroquine, on the other hand, is much less toxic to the retina and there have been fewer reported eye problems. In general, a baseline ophthalmic examination should be performed upon initiation of therapy. In addition, a central visual field test and color photographs of the retina are usually taken at that time.

There are differing opinions regarding subsequent follow-up exams. The most conservative opinion would include exams every 6 months with repeat visual fields every 6 to 12 months.

My general feeling is to perform annual exams with visual field testing. One study determined that the risk of retina toxicity when patients are taking less than 6.5 mg per kilograms per day is rare.

This means that a person weighing 150 lbs is likely to be safe if they are taking 200 mg twice daily. I calculate this number regularly and if the person is on more than 6.5 mg per kg per day than I will follow them more closely.

I have been on the Plaquenil for 10 months, and haven't had any side effects, other than an initial herx.

Here are some Links about Plaq:

Hydroxychloroquine (Plaquenil) http://www.midwestarthritis.com/html/plaquenil.htm

MEDLINEplus Drug Information Hydroxychloroquine (Plaquenil} http://www.nlm.nih.gov/medlineplus/druginfo/uspdi/202288.html

Here is another link about Plaq: http://flash.lymenet.org/ubb/Forum1/HTML/014267.html

Hope this help, and good luck!

Yes, light sensitivity can be caused by Lyme Disease. I know one of my fist symptoms was that my eyes would water every time I went outside, even with sunglasses on.

I do wear glasses, but just to drive and watch TV. I also have found that I needed to have a darker tint for my prescription sunglasses. This has helped alot.

Yes, I do feel that this medication has helped me tremendously. Not only will it help kill the cyst form of lyme, it has also helped me with my arthritis pain in my hands.

Like I said, I have been on plaq. for about a year and a half, and I do get regular eye exams,and I haven't had any side effects from this drug. So for me, this is a great med.

Let me know if you need more information!

Best Wishes,

~LymeBrat

I hope the Plaquenil will work for you! Are you taking any other medications for the Lyme?

When I first started taking the Plaq.. I had my eyes examined every 3 months. But now I go every 5 -6 months.

So please be sure to get your eyes checked, and let me know how it goes.

Take Care & Good Luck!

Just curious, what medications have you taken for the lyme? And have you been to an LLMD? (Lyme Literate Medical Doctor)

It sounds as if the lyme may still be active and you need another antibiotic other than the Plaquenil.

Alot of doctors are combining the Plaquenil with Biaxin or Minocycline. It's my understanding that the Plaq. helps the other antibiotics cross the blood barrier.

I'm not an expert, but it sure sounds like you might still have lyme in your system.

Okay enough preaching About the Plaquenil I think it took about 2 weeks for me to notice some relief in my arthritis type pain in my right hand.

I can understand your doctor cutting back on the Vicodin/hydrocodone. When I first started taking them for a failed lumbar puncture I became very addicted to them.

I am glad I was able to help you today, that's what this board is all about.

I sure hope the plaq will help with your pain!

Best Wishes,

Missy

Glad you didn't mind me on the soap box

I'm glad you have a PCP willing to look further into the Lyme. As for the ID doctor, I never had any luck with mine, but I pray you get one who knows about lyme.

I wasted 10 months with doctors who didn't have a clue, then I went to my LLMD and now I am 85- 90% better.

So I urge you to get treatment as soon as you can. The plaquenil is a start, but I think you need to add Biaxin, Minocycline, Tetracycline or another antibiotic to target the lyme.

So glad you found this site, and I will be keeping you in my thoughts and prayers.

Flagyl kills off the cyst form of Lyme, relieving headaches and warding off some types of relapses. If you have to choose between the two, it might be the better choice--ask your doctor!

C-Rae said:

"One drug that worked well as a very short term alternative was minocycline. It has great CNS penetration, so it nails a lot of hard to reach bugs, but the side effects get overwhelming after a week or two."

Yes, I agree Minocycline is a wonder drug! It is the only antibiotic I have been on to date that has helped with my neurological symptoms of Lyme.

I have been on it for 10 months and am doing better all the time. I did however have a really bad herx from the mino when I first started taking it. It is a very powerful antibiotic.

For my arthritis type symptoms, the Plaquenil has been doing wonders as well. The Plaquenil is used to help the other antibiotics work better, but it has the added benefit for arthritis symptoms as well.

Gary, Hope you are feeling better !

~LymeBrat

Over the last 6 to 9 months, Lyme symptoms have been slowly coming back.
This week, my hands & feet have been very painful.
Recent Bowen test was Positive for Lyme with serial dilution of 1:32.

quote:

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Originally posted by GEDEN13:
I THINK IM SPELLING IT RIGHT.DOES ANYONE KNOW WHAT PLAGUENIL IS?GOT A PERSCRIPTION YESTERDAY FOR IT.DOC SEZ...MALARIA,ARTHRITIS MED.I DONT KNOW.AINT TAKING THEM TILL I FIND OUT.TREATMENT FOR CHRONIC LYMES ARTHRITIS?SYNOVITIS?
THANKS, GARY

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if you do start taking it,have your eye's examined.that is one of the side effect's.

also,it did turn my hair grey,in one big spot.but after i stopped it,hair color returned.

since i posted this,i have been dxed with "fibro"???..i know it is still lyme.rheumotoligist put me on that path.

he told me the plaq ,is for the fibro.but i took it because people here(lymenet) ,said it is used for lyme....

missy (lymebrat) put some good link's on here.

funny,this is my 1st post here on lymenet,and about the only one i remember......gary