Plaquenil

[momcap]

Has anyone here used plaquenil for a cyst buster for their child? If so, do you mind sharing at what dose and for how long? Our LLMD has us adding plaquenil after 7 months of antibiotics therapy, and I'm SCARED! Liver damage, permanent vision damage - yikes! The possible side effects are really scary!

[rowingmom]

DD10 started plaquenil in Nov (100mg BID) and I was nervous too. It made her very emotional and we had to start at a lower dose and then increase. I think eye complications are more likely with higher doses and longer treatment times. Our LLMD said she used it to change intercellular pH and increase cellular penetration of the other ABX (biaxin/rifampin). So we were on 3, yikes!

 

I happened upon a couple of blogs mentioning some LLMD’s changing opinions of plaquenil . The first opinion was that the reason plaquenil helps lyme symptoms is because it acts as an immune suppressant. I guess this is the idea for its use in treating symptoms of lupus. Immune suppression is not necessarily a good thing.

 

http://plaquenil.net/

 

The second was just an opinion, but if you have read this blog you will find this doctor quite up on things:

 

http://lymemd.blogspot.com/2010/01/lyme-2010-brief-update.html

 

He states: “The benefits of Plaquenil are not clear. Rather than having an anti-cyst effect, it promotes cyst formation”. And “Sapi has now shown that Plaquenil induces cysts”. But if you check out all of his blog entries on “plaquenil” you will find that his patients usually reported feeling much better while on it. He appears to have used it regularly in 2008-2009:

 

http://lymemd.blogspot.com/search?q=plaquenil

 

I showed all of this to our LLMD and she decided to discontinue plaquenil.

A funny thing, I have been using LLM’s charting method, and there was definitely an increase in symptoms 2 days after removing plaquenil. Was this her immune system responding once again? Before starting plaquenil the dark circles under DD10’s eyes had cleared up. Soon after starting it, the dark circles returned and even though we discontinued in the middle of Feb, they still haven’t cleared again.

[SSS]

I was on plaquenil (not my dd) for 2 months, along with 2 other antibiotics.

Very interesting information in previous post--

I had none of the 'side affects' but it was a hard 2 months.

For cyst busting, I am going to ask for Tindi or Flagyl for dd and I.

(oh joy)

[nicklemama]

I have long term experience w/ Plaquenil. I took it for 14 yrs for rheumatoid arthritis. My dosing was 200mg bid. Anything over that is considered high dose in adults. It helped my RA tremendously. Its the only drug I took for RA. I did not need any other meds.

 

Here's the downside, it can and it sometimes does damage the eyesight. I have personal experience. I started having problems w/ shimmering lights in a small area of my central vision and blurriness in that same spot, both eyes. This was one yr ago when it began. I saw my ophthamologist in early May, was sent to a retina specialist and then to a university teaching hospital for tests. I have sustained permanent damage in both eyes due to plaquenil retinal toxicity. Short term, its fine. It is NOT for long term use. Too bad my former rheumatologist didn't know that. The retina specialist told me its well known by physicians that use greater than 10yrs puts a person at very high risk.

 

I am now taking minocycline for my RA and I feel great.

 

Edited to add: it takes about 8-12 wks to see the effects of plaquenil on RA when you first start taking it.

Edited March 6, 2012 by nicklemama

[momcap]

Very interesting information Rowingmom, especially the cyst-busting versus cyst-forming opinions. Thanks! Now I will be able to have a more informed discussion with my LLMD about this. My kids are already on 3 antibiotiocs - 1 for bartonella, 1 for extracellular lyme, and 1 for intracellular lyme. So this would be a forth med!

 

S&S - Can a child take tindamax or flagyl? My younger 2 boys are doing well and need a cyst buster to finish up. If Plaquenil may or may not be a cyst buster I would like to try something else that definitely is one so we can be done with this!

 

Nicklemama - wow, so sorry you experienced this serious s/e. That's just terrible. My kids have been prescribed 100 mg bid, not sure for how long. It sounds like this may be fairly safe for a few months. I haven't started it yet with the oldest because he already complains of visual disturbances, so how would I know if the med was causing something? He's flaring right now after a bout with influenza, and he told me colours are changing when he looks at things (???). For example, the yellow ball in gym class looked like a rainbow, even though he knows it is yellow. He has made this complaint before during exacerbation (couldn't read on coloured pages because the colours kept changing and distracting him), but I haven't heard it since we started lyme treatment in August. It makes me really worried about adding plaquenil. Lots to discuss with our LLMD. I myself have regular visual disturbances - shimmering rainbow lights, floaters, blurry spots, far away lightening flashes, (but never colours changing). My docs have dismissed this as migraine aura without headaches - which never made a lot of sense to me. Now that I know I have lyme it makes more sense, I think.

 

Thanks for the info ladies!

[SSS]

Yes, Tindamax and Flagyl are prescribed for children- espeically Flagyl since it also hits C-diff. and parasites.

 

We tried Tindimax with dd earlier- pulse- yikes! Rough.

Shelved it, working on more Lyme right now.

By the way, our Dr. called me to confirm dd's Amoxicillian dose-

it is 2,000 a day.

It is a high dose Amoxicillian protocol- he quoted Burrascano guidelines-saying adults 4,000 a day.

[SSS]

Sorry, also wanted to add I hear Tindamax can be really rough, but can produce some nice gains.

I did maybe 4 weekends of it with dd before stopping- at the end she pulled out of a severe clothing OCD issue-

Might be related, not sure, but I do hear of gains with it.

[LNN]

DS was 8 when he did tindmax for 5 weekends. Really really hard on the whole family. All sorts of pandas-like symptoms returned. We had to stop. But...we did get some really nice gains. If you're going to do it, consider doing it during the summer. DS had loss of impulse control that made for some embarrassing school moments - me with teacher phone calls and him with friends backing away for a time.

 

Not crazy about tindamax or flagyl risks. Wouldn't rule out using it again but when/if it's time to go after cysts again, I'm going to ask about pulsing rather than using a cyst buster.

[momcap]

 

 

Not crazy about tindamax or flagyl risks. Wouldn't rule out using it again but when/if it's time to go after cysts again, I'm going to ask about pulsing rather than using a cyst buster.

 

I've been thinking a lot on pulsing too. My DS6 has been pulsed, not for the lyme, but needed med breaks due to stomach aches, diarrhea and general intolerance to the abx. He's doing the best of all 3 kids, but he had the fewest symptoms to begin with. It makes me wonder. He's also no longer a strep carrier (YAY!!!), and his ASO is finally in the normal range. So at least someone in our family has a normal ASO now.