posted
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???
-------------------- 09/29/07: bitten since 05/01: omnicef+biaxin+plaquenil 350 cats claw + knotwood thruout. Posts: 227 | From Northern CA (bitten in Illinois) | Registered: Jan 2008
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posted
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.
-------------------- "You know, the worst, meanest, nastiest, ticks in the world are politicks," - Steve Nostrum Posts: 242 | From South NJ | Registered: Dec 2006
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luvs2ride
Frequent Contributor (1K+ posts)
Member # 8090
posted
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
-------------------- When the Power of Love overcomes the Love of Power, there will be Peace. Posts: 3038 | From america | Registered: Oct 2005
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merrygirl
Frequent Contributor (1K+ posts)
Member # 12041
posted
didt notice any side effects either
Posts: 3905 | From USA | Registered: May 2007
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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 Posts: 554 | From Naples, Italy | Registered: Jun 2006
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posted
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
-------------------- BJK
Nothing I write here is medical advice...I'm just another lymie sharing how this disease has affected me personally Posts: 175 | From Central Maine | Registered: Sep 2007
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posted
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.
-------------------- "Few of us can do great things, but all of us can do small things with great love". Mother Theresa
posted
thanks so much for sharing your experiences!!
i'm so glad to hear that many of you are having few troubles with this drug.
-------------------- 09/29/07: bitten since 05/01: omnicef+biaxin+plaquenil 350 cats claw + knotwood thruout. Posts: 227 | From Northern CA (bitten in Illinois) | Registered: Jan 2008
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CherylSue
Frequent Contributor (1K+ posts)
Member # 13077
posted
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
Posts: 1954 | From Illinois | Registered: Aug 2007
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posted
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.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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lymeladyinNY
Frequent Contributor (1K+ posts)
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posted
I'm on plaquenil - no side effects that I've noticed. The combo with biaxin is really helping me.
-------------------- I want to be free Posts: 1170 | From Endicott, NY | Registered: Sep 2006
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CherylSue
Frequent Contributor (1K+ posts)
Member # 13077
posted
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
Posts: 1954 | From Illinois | Registered: Aug 2007
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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
Posts: 406 | From Rhode Island | Registered: May 2007
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jamescase20
Unregistered
posted
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
Ive been on plaquenil for a month and a half and have noticed no side effects.
Posts: 370 | From NJ | Registered: Dec 2007
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CherylSue
Frequent Contributor (1K+ posts)
Member # 13077
posted
Thanks for your responses. I'm always nervous when I try out a new drug or nutraceutical.
Best to you all, CherylSue
Posts: 1954 | From Illinois | Registered: Aug 2007
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Aniek
Frequent Contributor (1K+ posts)
Member # 5374
posted
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.
-------------------- "When there is pain, there are no words." - Toni Morrison Posts: 4711 | From Washington, DC | Registered: Mar 2004
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posted
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?
Posts: 871 | From NJ | Registered: Mar 2007
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lightfoot
Frequent Contributor (5K+ posts)
Member # 2536
posted
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!!
-------------------- Healing Smiles.....lightfoot Posts: 7228 | From CO | Registered: May 2002
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posted
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.
-------------------- If you think it you can achieve it; if you dream it you can become it! Posts: 22 | From Germantown, Maryland | Registered: Apr 2008
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posted
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?
Posts: 561 | From eastcoast | Registered: Aug 2006
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lymednva
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Member # 9098
posted
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.
-------------------- Lymednva Posts: 2407 | From over the river and through the woods | Registered: Apr 2006
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CherylSue
Frequent Contributor (1K+ posts)
Member # 13077
posted
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
Posts: 1954 | From Illinois | Registered: Aug 2007
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posted
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!
Posts: 237 | From Rhode Island | Registered: Jan 2008
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quote: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.
I was taking it with that combination of drugs ... except I was taking Biaxin instead of the Zith.
It does both. It's also anti-malarial.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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CherylSue
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Member # 13077
posted
My LLMD suggested I stop the doxy and just do the plaquenil? I don't quite understand because I thought you need something to kill the lyme as it bursts from the cysts. The plaquenil is for the possilble babesia infection because I only just got so far with the doxy.
Anybody just take plaquenil by itself? Is this okay to do?
cherylSue
Posts: 1954 | From Illinois | Registered: Aug 2007
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Rianna
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posted
[QUOTE]Originally posted by CherylSue: [QB] My LLMD suggested I stop the doxy and just do the plaquenil?
Personally never heard of Plaquenil given on its own, normally given with a macrolide or combi of AB's - I would check as it does not make sense to me
posted
Plaquenil was prescribed to me to specifically alter the cell's Ph ,so the attendant ABX's could work better. Although it is also prescribed as an anti-malarial,I was,at various times,on a different regimen for babesia...(Mepron/ or Lariam/or Artemesia--(Over-the-counter) Thank God,I believe the babesia was gone early on.Still on ABX for Chlamydia pneumoniae,which was detected in bloodwork around the New Year. See this article..... http://en.wikipedia.org/wiki/Hydroxychloroquine
Joe
Posts: 249 | From Northern NJ | Registered: Jul 2005
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CherylSue
Frequent Contributor (1K+ posts)
Member # 13077
posted
Joe, thanks for that informative website. Plaquenil makes me feel very drowsy. Do I need to be concerned, or is this part of the herx?
CherylSue
Posts: 1954 | From Illinois | Registered: Aug 2007
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posted
I'm also taking Plaquenil (originally with Doxy, now with Zith, since I'm feeling well enough to be fairly active during the summer and my doc doesn't want me dealing with the sun sensitivity). I've been on it for about two and a half months. I haven't seen any side effects at all. My symptoms got noticeably worse right after I started it, then started improving steadily. When I added the Zith last week, I got hit hard again, but I'm willing to take that as a sign that it's working, and I'm just hoping I feel better before my next big vacation 7 weeks away.
So, long story short, I love the Plaquenil, it seems to be a very safe drug that works very well. Only complaint I have about it is that the generic form I'm taking tastes absolutely terrible, and I can't find anything that gets the taste out of my mouth afterwards.
Posts: 23 | From Rhode Island | Registered: Dec 2007
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CherylSue
Frequent Contributor (1K+ posts)
Member # 13077
posted
Raiden, Thanks for your reply. That is so encouraging. How much and how often per day were you taking it? Did you start at the full dose?
Best wishes to you.
CherylSue
Posts: 1954 | From Illinois | Registered: Aug 2007
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I'm taking 200mg of plaquenil, twice a day, along with 500mg of zith once a day. I don't think it's all that high a dose, but it seems to be working quite well.
As far as the drowsiness, it could be a side-effect, but going by what I've read and experienced myself, it's more likely the herx.
I was extremely tired most of the time when I started on it, now I have maybe 85% of my energy back. Still very little actual physical stamina though, but I'm starting to suspect that that might be babesia; I need to talk to my LLMD about adding in some Mepron to the cocktail to test that theory out.
Posts: 23 | From Rhode Island | Registered: Dec 2007
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CherylSue
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Member # 13077
posted
Thanks for your replies. I've been on doxy since December varying the dose. I guess I wasn't taking enough and relapsed. This week I've started plaquenil between 1 - 2 pills in addition to the doxycyline (around 300 per day) plus the nystatin.
When can I expect some relief from this housebound relapse?
CherylSue
Posts: 1954 | From Illinois | Registered: Aug 2007
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