LymeNet Flash: Has anyone used Plaquenil ? Jodie where are you

This is topic Has anyone used Plaquenil ? Jodie where are you in forum Medical Questions at LymeNet Flash.

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Posted by Murt1 (Member # 4206) on :

My very good lyme doctor wants me to start taking Plaquenil along with minocin that I am now taking and than maybe adding Biaxin.

I have taken a lot different potions but I am afraid of Plaquenil. Has anyone had any problems or sucesses? Thanks

Posted by robi (Member # 5547) on :

I took it for a few months then off because i was starting mepron/ketek.

Now my LLMD wants me to take it with the mepron and ketek..........so I guess I will be starting it soon.

robi

PS when I took it before I had no problems. I have an eye exam every 6 months

Posted by troutscout (Member # 3121) on :

I took it a while back noticed no eye problems...neihter did the Doctor.

Trout

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Now is the time in your life to find the "tiger" within.
Let the claws be bared,
and Lyme BEWARE!!!
Iowa Lyme Disease Assoc.
www.ildf.info

Posted by Murt1 (Member # 4206) on :

Thanks for your replys, I am glad you didn't have any problems but did it help at all?

What is its main pupose? Lyme or babs. I can't remember what my Doc said.

Posted by chainsaw joseph (Member # 6611) on :

Plaquenil is supposed to change your PH so the antibiotics can work more efficiantly,usually zith or biaxin.My doc has used it on hundreds of patients and he told me he has never seen any eye problems on it if you dont use it for more than a year at a time.I also am nervous about taking but will in a few months.

Posted by efsd25 (Member # 2272) on :

Murt1,

I took Plaquenil for over a year for Lyme with no issues.

See: http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=pubmed&dopt=Abstract&list_uids=14586290

Posted by zipzip (Member # 6226) on :

hi, not to scare you, but i had a horrible reaction to plaquenil, and unfortunately it wasn't a herx. it was just too toxic for me. knocked me waaaay back in treatment progress.

it's not an easy drug but it seems that 90% of people tolerate quite well, and it has helped many chronically ill people, not just people with lyme but with lupus, ra, etc. it has been the saving grace for many people, just not me.

it used for lyme, but has been anecdotally used for babs, because of its antimalarial component, and has also been called a "cyst-buster" because of its intracellular activity.

ramp up slowly and see how you tolerate it. best of luck!

Posted by Murt1 (Member # 4206) on :

Thank you for your replys, I feel a little better about trying it. I don't post often but when I do I always get some much needed help Thanks again

Posted by flygirl (Member # 6669) on :

this is an interesting topic, I just started taking it too (3 wks ago) and so far so good. I too am nervous about the eye stuff though - especially since I am blind in one already.

is generic just as good as brand name?

Posted by Murt1 (Member # 4206) on :

Flygirl I'm not sure but my prescription says substitution permissible also.

Thanks for your reply, Good Luck

Posted by Lil (Member # 4853) on :

My CNS reacted terribly to Plaquenil this week. Within 30 minutes of the first tablet I experienced massive buzzing in my ears, my vision didn't feel right and I developed nasty dizziness that got worse as the morning went on.

I only took 1/2 tablet that evening and the following day another 2 doses at half a tablet. I had a terrible day, felt wired yet fatigued and weak and it culminated in a massive panic attack at night because of the dizziness with a racing heart and I couldn't get to sleep until 4.15 am after having to take 2 betablockers.

It has taken me days to recover, I was doing very well before on Doxy 4 days a week with 3 days of Tinidazole. Needless to say I will continue with that regime.

Never again will I touch Plaquenil, it is lethal for me.

Lil

Posted by lla2 (Member # 2364) on :

lil, I would double check what else you took, as those arn't even side efffects of plaquenil. I've never heard of someone havign problems with it..unless you reallly panicked yourself out about it.

I was on it for over a year and 1/2 and so were both my kids ...200mg twice a day with no problems...taken with a macrolide to get into the cells better..both my kids are now off all abx and doing great! IT really helps with the inflammation too, and works to help with babesia elimination as well..

I happen to think it's a wonder drug for us...
My opthlamologiist, says that this drug is the COUSIN to a drug that CAN cause eye prblems, but he's NEVER seen any eye problems with plaquenil..and he has hundreds of patients on it for RA, lupus , lyme etc....

hope this helps,

Lisa
Lisa

[This message has been edited by lla2 (edited 25 December 2004).]

Posted by flygirl (Member # 6669) on :

Lisa, I have heard the same thing as you - related but not the same.

Posted by Lil (Member # 4853) on :

Originally posted by lla2:
[B]lil, I would double check what else you took, as those arn't even side efffects of plaquenil. I've never heard of someone havign problems with it..unless you reallly panicked yourself out about it.

hope this helps,

Lisa

Hi Lisa

It had to be the Plaquenil, I wasn't taking any other drug at all. Also I did searches on the Net for Plaquenil/dizziness/groups and I came up with lots of people who experienced the same symptoms as me.

I believe it is to do with the quinine in it and tinnitus is also mentioned as a side effect as is dizziness. This is because it can affect the central nervous system in some people.

One doctor said that 1/3rd of his patients couldn't tolerate it so side effects would appear to be quite common.

As it does the same as Tinidazole from the point of view of killing cysts I will stick with that, even though I have to build up to get the full dose of that it doesn't make me feel the way the Plaquenil did.

Lil

Posted by zipzip (Member # 6226) on :

plaquenil can cause neuromyotoxicity in a VERY small subset of patients. it is hardly a benign drug.

the effect on the CNS due to this toxicity can cause polyneuropathy, dizziness, tinnitus, etc.

Am J Med. 1987 Mar;82(3):447-55.
Related Articles, Links

Chloroquine neuromyotoxicity. Clinical and pathologic perspective.

Estes ML, Ewing-Wilson D, Chou SM, Mitsumoto H, Hanson M, Shirey E, Ratliff NB.

Six cases of toxic myopathy and/or neuropathy with chloroquine and/or hydroxychloroquine therapy are described.

Two patients had unique clinical and pathologic evidence of cardiomyopathy secondary to chloroquine or hydroxychloroquine therapy. One patient had polyneuropathy secondary to chloroquine toxicity. This may be the first documentation of several features of chloroquine/hydroxychloroquine toxicity: morphologic changes in human peripheral nerve in chloroquine toxicity; chloroquine/hydroxychloroquine cardiomyopathy diagnosed by endomyocardial biopsy; and hydroxychloroquine myotoxicity.

Chloroquine is a neuromyotoxin that affects nerves and cardiac and skeletal muscles. Discontinuation of chloroquine and hydroxychloroquine resulted in marked improvement in most cases. The reversibility of the symptoms emphasizes the importance of recognizing potential signs of nerve, muscle, and cardiac toxicity in patients being treated with chloroquine or hydroxychloroquine.

Posted by Murt1 (Member # 4206) on :

OK now I'm not so sure about using it as all my lyme symptoms are neuro. I don't need any other CNS problems.

Lil do you think you were herxing from it?
I had almost the same things happen on flagyl

10 years ago when I had Giardia, flagyl was a wonder drug with no side effects.
Now I can not take it in small doses without a major herx.
thanks for all your replys
Any others out there as the jury is still out

Posted by Lil (Member # 4853) on :

Lil do you think you were herxing from it?
I had almost the same things happen on flagyl

No, it definitely wasn't a herx but a toxic reaction to the drug. Thankfully it went away after 3 days of stopping it.

I have herxed a lot on Tinidazole and Doxy when I first took it but the herxes were nothing like this reaction to the Plaquenil which came on very quickly after the first dose.

However I think it is important people who take Plaquenil be aware that it can be very toxic and this shouldn't be confused with a herx.

Lil

Posted by Aniek (Member # 5374) on :

I've been on Plaquenil for months. There are a number of reasons it is used for Lyme.

Plaquenil can reduce inflammation. I went off it for a few days, and within 36 hours my hands became inflamed, stiff and painful. I think plaquenil is one of the reasons I no longer have hand pain.

People have mentioned its help in making the abx work.

Plaquenil is also an antimalarial drug. Some LLMDs think it may actually kill some coinfections. My LLMD said plaquenil likely kills babs, just very slowly. She said you would probably need about 3 years on it to get the babs out. Maybe some people's side effects were really a herx from a malarial type infection?

As for eyes - just get them checked every 6 months, and let the eye doctor know you are on plaquenil so you get the right test.

Posted by Murt1 (Member # 4206) on :

Thanks to all for taking the time to reply.
I picked up the pills today but haven't had the nerve to swallow one yet.LOL

Posted by vandeb (Member # 6345) on :

just wanted to say I've been on zithromax and plaquenil together for a month and I'm doing great......am having a little tinnitus but very bearable....

I'm going things I haven't done for months......walking on my treadmill 20 minutes a day, all the Christmas stuff, and now planning for New Year.....

please don't be afraid to try any medications your LLMD prescribes for you.....Lyme is a trial and error disease.....

I have taken doxy, flagyl, biaxin.....only one I couldn't take was biaxin......make me crazier than ever....I'm enjoying my life now but knowing a major herx is always around the corner.....

I've learned to deal with the Lyme, abx and herxing.....it seems to be a pattern for me kinda like the calm before the storm......but again don't be afraid to try plaquenil.....it might be the answer to your prayers.....God bless you

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Debbie V.

Posted by Murt1 (Member # 4206) on :

Thanks Debbie I think I will start it tomorrow. I will be adding it to Biaxin, minocin,nystatin and omnicef.
I pray God does Bless me through this, I hate taking all these pills.
just started the biaxin hope it doesn't make me any crazier than I already am. Marie

Posted by vandeb (Member # 6345) on :

Marie you will be in my prayers.....as far as being crazy, it's a natural part of Lyme....or at least other than being blonde I have something to blame it on.....hahaha

please update us about how you are doing....we're one big family here and we love to keep in touch and informed.....

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Debbie V.