This is topic is plaquenil worth it? in forum Medical Questions at LymeNet Flash.


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Posted by backintherain (Member # 14385) on :
 
I got up to 95% better using the biaxin/omnicef double whammy.
after 1.5 months of steady improvement, I'm starting a slow decline, and the doc says I should add plaquenil to the mix.
aaaaugh!!

Is plaquenil a cyst buster? Did people find that it was worth it?

After reading the side-effects others have experienced, I'm pretty scared again.
(ear-ringing, depressing, anxiety, vivid dreams, insomnia, horrible flatulence, horrible acne, hair loss...and the list goes on.)

I know lyme has so many ugly effects on us and the drugs do too. But when you get all the way up to 95% better, it's hard to convince yourself to deal with any more drug side effects.
and my intestines are not well as it is, despite megadoses of probiotics.

When I stopped taking doxycycline:
- I stopped crying nonstop
- was able to sleep again
- the constant ringing in my ears went away
- I stopped being so upset and anxious.

it was wonderful!!!

and now...is it worth going back there???
 

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Posted by steelbone (Member # 14014) on :
 
I know this much...it's make me herex big time. which is a good thing to a point
 

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Posted by catalysT (Member # 10786) on :
 
I had no noticeable side effects to plaquenil, which I took for over 6 months. Except for the first week or two, I did have some dizziness, which subsided after that. YMMV.
 

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Posted by luvs2ride (Member # 8090) on :
 
I did not have any noticeable side effects with Plaquenil either and I do believe it helped with my joint pain.

We are all different. Plaquenil is one of the safer drugs out there with little side effects.

I have Babs WA-1

Luvs
 

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Posted by merrygirl (Member # 12041) on :
 
didt notice any side effects either
 

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Posted by Sojourner (Member # 9424) on :
 
Yes, plaq is a cyst buster.

My husband was on it for a little over 6 months with no side effects, but he did have his worst, most painful herxes and improvement
 

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Posted by BJK (Member # 13251) on :
 
HI, Plaquenil was added to my treatment in October because I was declining as well.

It is a cyst buster...atacking the bateria when protected by a cyst it forms around itself. The bacteria actually multiplies in these cysts and then spread either in cycles, during stess or weakness, or as it senses its safe to come out.

Im my experience I did not have any ill affects, and just had my eyes checked with no problems after 6 months on this drug.

Without a cyst byster you may be vulnerable to spreading bacteria and abx do not usually penetrate the cyst for of the bacteria.

Im dont regret taking this....I wnat to kill the bugs any way I can

BJK

not medical advice...just my experiences and opinions
 

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Posted by hurtingramma (Member # 7770) on :
 
My dh and I both take Plaquenil. He has no side effects from it, I get a headache, which I have every day anyway. The Plaq just makes it work. It does seem to help with the joint pain though.
 

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Posted by backintherain (Member # 14385) on :
 
thanks so much for sharing your experiences!!

i'm so glad to hear that many of you are having few troubles with this drug.
 

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Posted by CherylSue (Member # 13077) on :
 
Anymore experiences? I picked up my RX today, and I'm so nervous about taking it. Doxy is the only med I tolerated so far, but my LLMD says it has stopped working so I need to go on and kill babesia>


CherylSue
 

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Posted by sixgoofykids (Member # 11141) on :
 
I have been on Plaquenil for 14 months and have had no side effects.

It not only is a mild cyst-buster, but it also makes the abx work better.

You may also try adding some grapefruit seed extract. I notice that even with as long as I've taken Plaqeunil, the GSE still makes me herx if I take too much.
 

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Posted by lymeladyinNY (Member # 10235) on :
 
I'm on plaquenil - no side effects that I've noticed. The combo with biaxin is really helping me.
 

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Posted by CherylSue (Member # 13077) on :
 
On the RX sheet it is listed as an immunosuppressant. Isn't this bad? I'm fighting the onset of a cold? Should I hold off? Now that I'm off doxy, is it safe to take plaquenil by itself like my LLMD suggested? Can it be taken with zith?

Just wondering.

cherylSue
 

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Posted by MusicMan (Member # 11966) on :
 
Hi there

I was on it for over five years.
It made me sleepy, gave me bad stomach aches and never saw much of an improvement on that along with 1,000 mg of Biaxn.

It was a long time and I only stopped because I ended up in the Hospital with Pancreatitus. My Gastro said the plaq was the cause so I had to stop.

I'm on Azith and Amantadine now and I'm already starting to feel some changes after about three months now.

I say give it a try and see how it goes, I would give it at least one month unless it get you really sick then, no choice there.

Hope it works out for you.

Steve
 

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Posted by jamescase20 (Member # 14124) on :
 
I saw a few artifacts in my vision that didnt exist. OR maybe I am just a hypocontricac. HAHA, no I think I will keep taking 1 a day, but I ttried 3 a day, and omg, my eyes seemed to be mad. DEF helps with pain. TOTALLY YOu can alternatively use amedidine, but that would not bust the cyst, it just allows the unstable marcolide to get into the red cell and kill the lymes that hides there. My ears ring, but from lariam.
 

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Posted by trish4 (Member # 14156) on :
 
Ive been on plaquenil for a month and a half and have noticed no side effects.
 

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Posted by CherylSue (Member # 13077) on :
 
Thanks for your responses. I'm always nervous when I try out a new drug or nutraceutical.

Best to you all,
CherylSue
 

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Posted by Aniek (Member # 5374) on :
 
I was on plaquenil for over 3 years. I had no side effects and it was incredibly effective at keeping my inflammation under control. I've been having a lot more inflammation and pain since stopping it.

If you are going to be on it for a while, you want to get a visual field test done before you start it and again every 6 months to make sure you are not losing your peripheral vision. As long as you get tested ever 6 months, you should catch any damage before it has a noticeable impact on your vision.

My eye doctor told me that he has seen plaquenil damage in people's eyes, but it was people who had been on it for over 10 years and never had a visual field test.
 

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Posted by maureen2174 (Member # 11471) on :
 
Does anyone know how long it takes for the plaquenil to get into your system (at full strength)? I think i read that it has to build up over time?

Also, how long it takes to get out of your system? I was on it for 7 months with biaxin, was off it for the past 4-5 months, but can add it back in if I want (I have it). I am on mepron/biaxin/bactrim now.

Just wanted to know how long I would have to take it for it to be worth adding it back in, if that makes any sense. If I am only on the biaxin for another couple of months, then it may not be worth it, right?
 

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Posted by lightfoot (Member # 2536) on :
 
Hi backintherain!

I have been taking plaquenil for a very long time in combo with zith. I have had no noticeable side effects at all. I have taken various other ABX in addition over this long period, namely rocephin and IV doxy.

I do the eye exams recommended every six months....so far....no problems.

Good luck!!
 

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Posted by Blymey (Member # 15215) on :
 
I'm on a Plaquenil/Biaxin combo - had Amoxicillan in there too but had "itchy hands" which turned out to be a bad reaction to the amoxicillan - so we stopped it. Dr. J. determined not to put me on doxycycline due to the fact that it can cause light sensitivity...depending on how other abx work we may not need it, but he said he'd wait until the days were shorter if we had to go that long.

Granted, I've only been under treatment for 3 weeks - but so far I've had no major side-effects. Herx hasn't been too bad either - granted, I've been diagnosed with mild chronic lyme - so, would guess that I would experience mild herx as well ? The herx that I am experiencing would be extreme muscular pain, especially between shoulder blades in the back and in the lower back...also weird muscle weakness in upper muscles of the arms and thighs.

Anyways, have experienced nausea, but that only happens when I don't get enough sleep (4-5 hours). If I get 6-8 no nausea. Joints aren't hurting too badly anymore and it's the first time in 18 years that my knees have been pain free - I can't tell you the joy I am experiencing with that. Although ankles, feet and toes can still go wacko.

I have also removed all carbs (OK - fruits and veggies are fine - but read somewhere on the internet to not eat anything made with flour - so with the exception of one occasion where I was craving french onion soup - it was soooo good - I haven't slipped), eat only lean meats, am loading up on the fruits and veggies and am taking l-carnitine, magnesium citrate, CoQ10, Ester-C, B6, Sam-E, Fish oil (which sux - when you burp it's like you've just had sardines - yuck!), Borage Oil (I think that's it), and no dairy due to the high Vitamin D count (way past toxicity range).

My only problems right now are that I am missing my caffeine and my cheese. I am also walking 3 miles per day (with dog who needs to lose some weight as well) and do at least 30 minutes 3x per week on our elliptical.

Basically, being diagnosed with Lymes Disease has been the best thing that has ever happened to me. I am getting healthy, I am NOT crazy with "imagined" symptoms and will be better some day.

Good luck with the new drug and keep us posted.
 

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Posted by shoney (Member # 9925) on :
 
Blymey-I have the same "weird muscle weakness in upper muscles of the arms and thighs"-I thought it was from bart or babs-

Does your Dr think it is from lyme?
 

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Posted by lymednva (Member # 9098) on :
 
i've also been on plaquenil for 2 years and have experienced little or no side effects. my llmd uses it as both a cyst buster and to reduce joint pain.

many of the so-called side effects you mention are just plain symptoms for me. i've had them since long before my dx.
 

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Posted by CherylSue (Member # 13077) on :
 
Has Plaquenil helped with your Babs? This is why the doc is prescribing it. I'm very sensitive to many meds, so we're going to go slow with this one.

CherylSue
 

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Posted by Niere (Member # 14387) on :
 
Blymey--if you have babesia Coq10 is a big no-no according to my llmd and at least was proven correct in my situation.

Long story short when I was coming off a horrible tetra induced herx which for some reason brought out tons of babesia symptoms, the last symptoms finally resolved for me when I quit the CoQ10.

Not that I'm free of babesia by any stretch but it was clear to me that CoQ10 does feed the babesia. Unless you really need it, you may want to reconsider it until you've treated the babs (or maybe you already have, in which case this is a moot point. )

Good luck!
 

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Posted by sixgoofykids (Member # 11141) on :
 

quote:

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Originally posted by johnnyb:
am a little confused about Plaquenil....

So, its a cyst buster? I thought I heard you'd take it with a macrolide to make the macrolide effective against lyme?

Does it do both? Would it be safe to add along with Babesia treatment (Mepron, Zithromax, and Artemisinin), to help the Zith I am already taking get the lyme too?

(Of course I will ask my LLMD....) but opinions welcome!

Thanks.

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