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» LymeNet Flash » Questions and Discussion » Medical Questions » Plaquenil herx - any experience?

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Author Topic: Plaquenil herx - any experience?
nefferdun
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I started plaquenil a week ago. Almost immediately I felt more depressed with bouts of crying. This was surprising as i was feeling pretty good before.

Now my legs ache and I am wiped out. It feels like this is stirring something up that was buried. I feel like I did when I started Mepron but not as bad.

Is this typical? What do you think it is hitting? Is it the babesia or perhaps the lyme cyst?. I have had a few muscle twitches and had none of those for months. My brain is also getting foggy again. I hope this is a good thing and short lived.

I go to the GP tomorrow but he doesn't know anything. I have to tell him what to give me and I am trying to figure that out now.

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old joke: idiopathic means the patient is pathological and the the doctor is an idiot

Posts: 4676 | From western Montana | Registered: Apr 2009  |  IP: Logged | Report this post to a Moderator
Marine6624
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Plaquenil is a cyst buster ! You probably just have some herxing going on , as you kill the little buggers [Smile]
Posts: 198 | From Rhode Island | Registered: Sep 2010  |  IP: Logged | Report this post to a Moderator
Bugg
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Hi Nefferdun-

If you search under my name and plaquenil recently I had the SAME reaction. It did not help me at all and I had to stop it. In fact, it eventually sent shooting pains down my legs.

Please make sure that you are taking enough sublingual B12 and folate (wards off depression) and Vitamin D....

So sorry you're hurting....

Posts: 1155 | From Southeast | Registered: Oct 2005  |  IP: Logged | Report this post to a Moderator
nefferdun
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Thanks, Think I will quit using it. My head is so spacey I feel like I am floating. I felt like this months ago when I first started treatment. I thought maybe this is a herx and a good thing but I would like to be able to think more clearly and I don't want to fall back into that depression.

I just got back from the GP who is helping me. I am going to start malarone with zithro and also use up the rest of Mepron which I got from Canada. I am going to do two rounds of Coartem too.

My legs feel ok today and I am not as tired. I also had swelling pop up. Not sure this is all not a good indication of getting deeper into the tissue. It is my marshmellow mind that is bothering me. I just don't want to feel this way.

The reason I added plaquenil was I was at a plateau and beginning to slip backwards. I feel I need to get more aggressive or at least make some changes to prevent resistance.
And it is so expenisve. I was hoping I could find a cheaper alternative to help out.

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old joke: idiopathic means the patient is pathological and the the doctor is an idiot

Posts: 4676 | From western Montana | Registered: Apr 2009  |  IP: Logged | Report this post to a Moderator
desertlily
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I've never been on Plaquenil, but just to throw this out there.... I had very similar symptoms when I was on both Flagyl and Tindamax. I also had to stop them because they became very difficult to tolerate.

I'm treating the Bart right now and I'm hoping I'll be able to do tolerate meds to treat the cyst forms after that.

I just thought that maybe all these cyst buster type meds may cause similar herxes, especially if you're dealing with neurolyme.

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Susan

Posts: 80 | From Queen Creek, AZ | Registered: Nov 2007  |  IP: Logged | Report this post to a Moderator
nefferdun
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Maybe that is it desertlily. When I tried to take tindamax I had to quit after a week. It was too much. My shins were burning and I don't remember what else. That is another reason I decided to try plaquenil. I was ok when I pulsed tindamax twice a week.

I went to the GP and the new plan is malarone/ mepron (until I run out in 6 weeks)/ zithromax/ artesunate

I will take a break after the first 3 weeks and then do the Coartem.
Then back to the above for 3 weeks. Then Coartem again.

I will pulse Tindamax two days and diflucan one day while not on coartem.

See what happens.

I did not take any drugs this morning - I forgot. I felt much better emotionally and mentally. Shins burn though.

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old joke: idiopathic means the patient is pathological and the the doctor is an idiot

Posts: 4676 | From western Montana | Registered: Apr 2009  |  IP: Logged | Report this post to a Moderator
Ticktoxic
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MONITOR: The risk of peripheral neuropathy may be increased during concurrent use of two or more agents that are associated with this adverse effect. In some cases, the neuropathy may progress or become irreversible despite discontinuation of the medication

Your Dr should have checked you for a Glucose-6-PD deficiency before using this drug

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Rumigirl
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Two things:

It looks like you know this, but just to make sure, many things interact with Coartem, so you should not only stop your other meds while you do it, but also allow a wash-out period in between. I forget how many days is necessary, at least 3, but probably about 6. The 1/2 life of the 2 meds in Coartem is quite long (at least one of them anyway).

Have you done it before? If not, it can cause wicked herxing, but can also help a lot.

When I did Plaquenil briefly years ago, I had a horrible reaction. I was never sure if it was the Plaquenil, or just the various treatments causing it, but I thought it was the Plaquenil. It was like doing LSD 24/7 for a week!!! I almost didn't make it.

When I was coming out of it, my husband reminded me that I had exactly the same reaction to an antimalarial in the same class years ago (it's now off the market). Whew!

Hang in there. It's a mighty rough ride.

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sixgoofykids
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Plaquenil, according to what my LLMD told me, acts as a cyst buster, makes zith/biaxin work better, and is anti-malarial. So, it could have been any combination of those things making you feel bad. Or side effects. I'd talk to the doc.

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sixgoofykids.blogspot.com

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nefferdun
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I accidentally took the plaquenil last night because it was in my pill box and I absentmindedly just took the whole thing. It was when my shins started to burn with redness around the ankle and then my hand started to ache that I realized what I had done. So I am taking it out of the mix today.

I went to the GP yesterday and he did not want me to do the plaquenil even though I did not tell him about my reaction other than it was "hitting something". Maybe it was just increased neuropathy. Maybe it was attacking the bart/ehrlichia because it made the zithro more effective. It was the mental changes that really worried me.

The GP gave me a script for the malarone and Coartem. I know about
taking a break between zithro and Coartem of at least three days. Zithro stays in the body 72 hours so a little longer might be a good idea. The local pharmacy cannot get it so I will have to go through Canada if Wall Greens can't get it either.

I am prepared for a big herx. I just hope it is worth it and gets me a little further along. I have spent 9 thousand dollars out of pocket on the Mepron. If this was all paid for by insurance I probably would not be so anxious to attack it at a deeper level.

Too bad the LLMD did not take much interest. He only prescribed one teaspoon Mepron twice a day with Zithro - not even one supplement - no artemisinin. Then my follow up phone consult had no changes. It is commonly thought that this is not adequate for duncani. I did not need his "expert advice" to come up with this treatment plan which in my opinion is inadequate and geared towards protecting himself rather than curing me.

The LLMD cost me two thousand dollars including three days travel with airfare, lodging and meals in a huge city in the downtown area. It was not a pleasant vacation as I completely crashed when I got home - I just can't do this any more.

What have I got to lose? I am not doing anything that many of you on here have not tried. Maybe it will work. Maybe it won't.

The GP does not know anything about Lyme and co-infections. He was completely baffled why I had been switched from antibiotics to anti-malarials since I last saw him nearly a year ago. He had not even heard of Mepron or Coartem. He has no interest in learning either. He believes I am the ONLY person he has ever seen with this disease. Thank GOD for my positive test results and for the fact that I am able to get treatment from someone.

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old joke: idiopathic means the patient is pathological and the the doctor is an idiot

Posts: 4676 | From western Montana | Registered: Apr 2009  |  IP: Logged | Report this post to a Moderator
   

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