Topic: HORRIBLE muscle weakness on Plaquenil--side effect or Herx?
Hoosiers51
Frequent Contributor (1K+ posts)
Member # 15759
posted
Hey all. My muscles are sooo weak right now that I am thinking this is a side effect of Plaquenil and not a Herx.
This morning I extended my arm to pump soap when I was washing my hands, and just pushing down was noticably hard. I can barely walk a flight of stairs, and this happened rather suddenly. It hurts really badly if I try to.
I never really had these problems as a symptom of my Lyme and co before starting the Plaquenil a month ago. I noticed a little bit of weakness last week, but today it is horrible, on the verge of scary.
My muscles just feel like on the verge of collapse. Lifting my arms in any way makes all these muscles hurt and ache.
For some reason I don't want to call the pharmacy. Maybe it's because I feel exhausted. I just assume they will read the description of side effects, which I have already done. Muscle weakness is listed as "rare." The description didn't make it sound "serious" though. So it's like, what could they possibly tell me? Wait and see?
I just want to see if anyone has heard of this symptom associated with Plaquenil or any of the drugs I'm on....the others are Mepron, Zith, Amoxy, and Artemisinin (which I don't tolerate well so i take it off and on).
I'm just kind of scared!
Thanks for any help anyone can offer.
Posts: 4590 | From Midwest | Registered: Jun 2008
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Clarissa
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posted
I'm not a plaquenil PRO but until some others give input, I'll tell you what I do know.
Plaquenil helps the abx get inside the cells so it can bust the cysts open, causing them togo back into the bloodstream where they can be killed in spirochete form.
If you're just adding this in with your abx, there's a good chance that you're herxing like a mother due to the cysts being busted and coming out into the bloodstream...abx are attacking, hence the big die-off and the herx.
I hope that makes sense!! My guess is massive herx.
cactus
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posted
Hey Hoosiers!
My guess is along the same lines as Clarissa's, I don't know if it could be a side effect, and lean more toward herx since cysts are such a big issue.
Maybe someone will come along with more info soon...
In the meantime, I wanted to send you some feel-better vibes!
-------------------- �Did you ever stop to think, and forget to start again?� - A.A. Milne Posts: 1987 | From No. VA | Registered: May 2005
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Hoosiers51
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Member # 15759
posted
Thanks Clarissa.
Yes, that does make sense. I am hoping that is what this is.
It is so bad though; I just didn't know a Herx could be this bad! I don't want to stop it, but it is almost so bad I'm worried this drug is hurting me! A lot of non-Lyme doctors hate using is because of the eye toxicity....so for some reason I'm freaked out that its just toxic in general!
I hope I'm herxing. It is actually getting scary....my fingers are getting so weak I'm actually having a hard time typing. Some of my fingers are too weak even to reach and push certain keys.
THAT is scary. I can't decide if I should call the pharmacy or not. What if my throat forgets how to swallow, or my lungs forget how to breathe? My fingers are starting to "go." Oh God, help me!
Posts: 4590 | From Midwest | Registered: Jun 2008
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luvs2ride
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posted
I take plaquenil and it does not cause muscle weakness for me. I had muscle weakness before I started plaq, but I also started ammoxycillan, biaxin at the same time so don't know which cleared up the weak muscles.
I'm off the others but continue the plaquenil without issue. Babesia does cause muscle weakness. Plaquenil is good for Babesia as it is an anti-malarial drug.
My guess is also that you are herxing.
-------------------- 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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Hoosiers51
Frequent Contributor (1K+ posts)
Member # 15759
posted
Another thing I should mention is my hands are starting to shake some, like trembling.
This is so scary! It's almost like my fingers are trembling on their own.
Posts: 4590 | From Midwest | Registered: Jun 2008
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cactus
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posted
I think you could call your LLMD on this one.
Hang in there.
-------------------- �Did you ever stop to think, and forget to start again?� - A.A. Milne Posts: 1987 | From No. VA | Registered: May 2005
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I think your current situation warrants you calling your LLMD, as soon as you can.
I do get muscle weakness, from time to time, when I'm really toxic and/or herxing bad though.
I believe it's always better to be safe, than sorry, though and get an expert opinion from your LLMD, especially since you have it so bad.
I'll be thinking of and praying for you!
Please let us know what you find out!
Love, Light, & Health, Jennie
-------------------- My Lyme dx:11/05. My Mom's Lyme dx:5/16. ISO ASAP-Lyme Literate Dr & Neurologist-Prefer IL, IN, KY, MO, OH, TN. Can travel farther. Finances limited. Prefer Drs take Medicare or Payments. Need great list to find best fit. Tyvm. Posts: 701 | From Owensboro, KY | Registered: Sep 2005
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posted
I feel this same exact way as you but I am on Levaquin/Flagyl and I cannot tell if its a herx or a side effect of the Levaquin.
I've been on Flagyl since June and just added the Levaquin in.
I've been pretty much down on the couch since Friday. I hope this passes soon for both of us.
Posts: 261 | From NW Pa ~ Crawford County | Registered: Oct 2007
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posted
I was just about to post on this myself. Then I came upon your post.
I started Plaquenil a month ago too. I haven't had a herx reaction from it yet. I also just started Bicillin a few weeks ago.
Today at about 4 I started to have muscle weakness in my legs and now it has moved to my arms. I am also having some air hunger.
I feel very weak and just not right. I wasn't sure if it was a side effect either. I have since noticed that my leg muscles are starting to twitch too.
I am thinking it might be a herx...since I have other minor things happening too. It also hit me like a ton of bricks out of nowhere.
I would think if it was a med side effect it would have shown up a little sooner. That's just my opinion though.
You can PM me if you want. I plan on calling my LLMD tommorow if it get worse.
Be well, kit
Posts: 655 | From Pennsylvania | Registered: Jul 2006
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Hoosiers51
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Member # 15759
posted
Yes! I have gotten the muscle twitching too since starting Plaquenil. I have had that for a couple weeks though. I didn't really mention it because it is the least of my worries right now
That is such a weird coincidence, kitkat. I decided not to call my LLMD tonight. I appreciate everyone's advice, and I probably should have followed it, but I think I am going to wait until tomorrow, and if I still have it I will call him.
He is normally not the most reassuring doctor, so I try to avoid calling him if I can (I know, that's another can of worms right there....) And he usually just tells me to go off things...I feel like he doesn't really think about it much when I ask him questions about that sort of thing. So that's why asking is a deterrent.
I will be interested to hear what your LLMD says, kitkat. I forgot who said they have been on the couch since Friday, but that is basically me. I have pushed myself to leave the house briefly a couple times, but technically I am pretty bad.
It probably is a Babesia Herx, but who knows. I posted a thread here a week or so ago about some strange wording in the Side Effects desciption for Plaquenil....I will paste it below.
Thanks you all for being so supportive!
Posts: 4590 | From Midwest | Registered: Jun 2008
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Hoosiers51
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Member # 15759
posted
Here is the link to my previous question:
I guess my weakness must have started like 13 or 14 days ago based on the date of this post....but maybe it got better, because it has definitely not been like it is today!!!
This muscle weakness thing was in the paragraph talking about the eye side effects, that's why I wasn't sure if they were talking about the muscles of the eye, or muscles in general.
Hoosiers51
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Member # 15759
posted
Thanks for the input, kitkat! It's starting to get a little better, but I will likely call him tomorrow.
Posts: 4590 | From Midwest | Registered: Jun 2008
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posted
Hoosier - I am taking Zithromax/Ceftin so I know the situation is different but I can tell you that I had three weeks of weakness like you describe. I had to use my arms to help my climb, my upper arms were burning and aching and twitching and arms and hands were weak. I had trouble holding my coffee mug. I explained it all to the Dr. and he said very in line with a herx. He did not think it was an allergic reaction, but better to check with your doc to make sure.
Posts: 144 | From Connecticut | Registered: Sep 2006
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Clarissa
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Hoosiers:
I would definitely put a call into your LLMD but I did just remember a personal experience.
The very FIRST time I went on plaquenil (coupled with Biaxin), a few hours later, I literally, could not feel my arms.
It was the scariest thing EVER! I got out of bed and starting doing pushups to prove that they were not paralyzed.
That's even beyond muscle weakness. I couldn't FEEL my arms. Thank goodness it passed and I felt them again in the morning. It never happened again.
Just thought I'd share.
Let us know what your doc says and try not to panic!
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So that's why asking is a deterrent.
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