• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

Plaquenil- Herxing?

Messages
18
I was prescribed Plaquenil approximately a month ago. The first week was very difficult, kidney/back pain, salivary gland swelling, body aches, fatigue. By week 2 most symptoms had resolved. Now in week 4 there back- my face, head body aches, incredible fatigue, little nauseous just basically feel like crap. My question is " Does plaquenil cause a herxheimer reaction and if so, to virus? or am I dealing with bacteria or fungal infection?

I started this journey in April with a high CPK due to skeltal muscle damage. Doxyclycline, prednisone did not help. We assumed it was due to high EBV, Coxsackies, Herpes virus titres. Now months later, I am on LDN 4.5mg, Valtrex 1000mg. Prozac 10 mg, all these antivirals and I am not feeling too much better.

I still have the feeling that the reason behind the high viral load is because of some kind of bacterial/fungal infection! That the source of CPK was never found, and all these antivirals have been of very little use! Feeling very frustrated!

I also want to point out my main symptom was extreme leg weakness which resolved after moving from moldy house. So what does extreme mold sensitivity, plaquenil herxing, and a high CPK have in common? It sounds fungal in nature but I don't have any fungal symptoms???? So confused, sorry for rambling......
 

IreneF

Senior Member
Messages
1,552
Location
San Francisco
I was prescribed Plaquenil approximately a month ago. The first week was very difficult, kidney/back pain, salivary gland swelling, body aches, fatigue. By week 2 most symptoms had resolved. Now in week 4 there back- my face, head body aches, incredible fatigue, little nauseous just basically feel like crap. My question is " Does plaquenil cause a herxheimer reaction and if so, to virus? or am I dealing with bacteria or fungal infection?

I started this journey in April with a high CPK due to skeltal muscle damage. Doxyclycline, prednisone did not help. We assumed it was due to high EBV, Coxsackies, Herpes virus titres. Now months later, I am on LDN 4.5mg, Valtrex 1000mg. Prozac 10 mg, all these antivirals and I am not feeling too much better.

I still have the feeling that the reason behind the high viral load is because of some kind of bacterial/fungal infection! That the source of CPK was never found, and all these antivirals have been of very little use! Feeling very frustrated!

I also want to point out my main symptom was extreme leg weakness which resolved after moving from moldy house. So what does extreme mold sensitivity, plaquenil herxing, and a high CPK have in common? It sounds fungal in nature but I don't have any fungal symptoms???? So confused, sorry for rambling......
You are probably not herxing, for several reasons: It occurs when you take an antibiotic against endotoxin-producing and similar bacteria; the reaction begins shortly after you start the antibiotic; it usually goes away by itself.
https://en.m.wikipedia.org/wiki/Jarisch–Herxheimer_reaction

Plaquenil is an anti-malarial and anti-inflammatory, so unlikely to cause an inflammatory reaction (and the malaria organism is not a bacterium).

You can have high CPK levels when you are healthy, plus medical tests can give a false positive.
https://en.m.wikipedia.org/wiki/Creatine_kinase

People with CFS/ME typically feel lousy in the absence of overt infection. Valcyte or Famvir (not Valtrex) may or may not help; if they do, it can takes months or years. Doxy never helped me; I don't know if it's helped anyone else. I took Plaquenil for a long time, then stopped because I was worried about the rare but irreversible side effect of blindness. I don't know about Prozac. I am currently taking LDN. I was starting to do better but I crashed after a series of social events.
 
Last edited:

Wonkmonk

Senior Member
Messages
1,006
Location
Germany
I was prescribed Plaquenil approximately a month ago. The first week was very difficult, kidney/back pain, salivary gland swelling, body aches, fatigue. By week 2 most symptoms had resolved. Now in week 4 there back- my face, head body aches, incredible fatigue, little nauseous just basically feel like crap. My question is " Does plaquenil cause a herxheimer reaction and if so, to virus?

Hello, roxnhead, if you're still here: I decided to give Plaquenil plus Valtrex a try last week and it feels very much the same as what you describe. I also have kidney/back pain, swollen tongue and hands, body aches, sweating, and feeling a bit nauseous.

Maybe it is not a herxheimer reaction like with antibiotics, but I am wondering if this is actually a real negative effect or if it may be part of the effect of the drug, i.e. a sign that it might be working. For instance, Dr. Lerner wrote in his studies that an initial worsening upon starting with Valtrex for EBV predicts good response.

Did you continue the treatment? Did it help?
 

Pearshaped

Senior Member
Messages
580
Hello, roxnhead, if you're still here: I decided to give Plaquenil plus Valtrex a try last week and it feels very much the same as what you describe. I also have kidney/back pain, swollen tongue and hands, body aches, sweating, and feeling a bit nauseous.

Maybe it is not a herxheimer reaction like with antibiotics, but I am wondering if this is actually a real negative effect or if it may be part of the effect of the drug, i.e. a sign that it might be working. For instance, Dr. Lerner wrote in his studies that an initial worsening upon starting with Valtrex for EBV predicts good response.

Did you continue the treatment? Did it help?
Hi @Wonkmonk may I ask how it went ?
Did it do anything for you ?
 

Wonkmonk

Senior Member
Messages
1,006
Location
Germany
Hi @Wonkmonk may I ask how it went ?
Did it do anything for you ?

Hi Pear,

sadly, it didn't help at all and if I remember correctly I even felt a bit worse. I didn't do it for very long. Some will say it's important to stick to the therapy for longer to see an effect, but I don't really believe in that. Maybe I'm wrong, but I felt very strongly that it wouldn't help even if I did it longer.

What I am doing now and what has really improved my situation a lot is adjusting my diet in very strange ways, like not combining fat and protein and avoiding certain spices and sugars. It doesn't fit with any known (or at least known to me) food intolerance or dietary syndrome, but it really helps and I am currently trying to figure that out. I wrote another thread on this.

In my case, which is certainly not a typical CFS/ME case, I think diet plays an absolutely central role and I don't think that medications (at least the widely discussed ones) are going to help me.

Kind refards.
 

Pearshaped

Senior Member
Messages
580
Hi Pear,

sadly, it didn't help at all and if I remember correctly I even felt a bit worse. I didn't do it for very long. Some will say it's important to stick to the therapy for longer to see an effect, but I don't really believe in that. Maybe I'm wrong, but I felt very strongly that it wouldn't help even if I did it longer.

What I am doing now and what has really improved my situation a lot is adjusting my diet in very strange ways, like not combining fat and protein and avoiding certain spices and sugars. It doesn't fit with any known (or at least known to me) food intolerance or dietary syndrome, but it really helps and I am currently trying to figure that out. I wrote another thread on this.

In my case, which is certainly not a typical CFS/ME case, I think diet plays an absolutely central role and I don't think that medications (at least the widely discussed ones) are going to help me.

Kind refards.
Hi,
oh how sad.
thank you so much for the feedback.
Glad to hear you find improvement in something else.
 

Wonkmonk

Senior Member
Messages
1,006
Location
Germany