Plaquenil side effect

[Zoe]

Not a good morning for me. I woke at 2am with hands and feet in horrible pain,sweating, and my face as white as a sheet. I just started going to an AP Dr. and have been taking Plaquenil 200mg a day for a month. He uped the dose to 400mg 8 days ago and now this. I am wondering if this is a side effect. All pass posts I could find on Plaquenil talked about it helping with inflamation, not causing it.

Any input would be great. I'm due to start Doxy next week,and I've read about feeling worse before feeling better but I don't know if I can do this. I have 4 kids, one still in diapers. I don't know how Im going to change her today.

I hope I feel better as the day goes on.

Thanks, Zoe

[Suzanne]

Zoe, I hope you call your dr. today to report this.  My young daughter takes Plaq (rx'd by her reg. rheum, but supported by her AP rheum) and since one of the 'negatives' about it is that it takes so long to build up in your system to start to work, an immediate reaction like this (if it is from the Plaq) sounds concerning to me.  We were told it would take at least three months to see it help inflammation (still waiting, but it oddly helped stomachaches and lowgrade temps!).

I hope you are feeling better and get some answers.

Mom of teen daughter with Poly JIA since age 2. Current med: azithromycin 250 mg MWF.

[mschmidt]

Zoe,

I agree–I would put a call into your doctor about this.  I was on Plaquenil for about 8 months, with no side effects at all but, everyone's body is different, and reacts differently to medications.  Since this is an immediate reaction, I think it warrants a discussion with your doctor.  Good luck, and let us know what happens.

Maria

[Maz]

[user=2247]Zoe[/user] wrote:

Not a good morning for me. I woke at 2am with hands and feet in horrible pain,sweating, and my face as white as a sheet. I just started going to an AP Dr. and have been taking Plaquenil 200mg a day for a month. He uped the dose to 400mg 8 days ago and now this. I am wondering if this is a side effect. All pass posts I could find on Plaquenil talked about it helping with inflamation, not causing it.

Any input would be great. I'm due to start Doxy next week,and I've read about feeling worse before feeling better but I don't know if I can do this. I have 4 kids, one still in diapers. I don't know how Im going to change her today.

Hi Zoe,

Plaquenil is an anti-protozoal medication, developed originally for the treatment of malaria, a relapsing/remitting febrile illness. It is use off-label for rheumatic diseases, because it was found to also have some anti-inflam effects, but it can takes 3 to 5 months to take full effect.

Is there any chance, at all, that you might have Lyme and the coinfection, babesiosis, which is also a common hitch-hiking friend of Lyme and is also a protozoan infection, much like malaria? If so, this could be die-off from this….but, as Suzanne and Maria say, it is important to report all symptoms to your doc, as this could also be some type of drug reaction.

Depending on the degree of inflam you are experiencing, it is very possible you will herx with doxy, Zoe. Important to understand the protocol before diving in, so if you get a chance to read the info on the main site and in the Scammell book, this should help you understand the rationale for using AP. It is not like immunosuppressive therapy…rather, it gets to root causes (infections) and, when they die off, will produce a short-term immunological reaction, called a jarisch-herxheimer effect or “herx” for short. When beginning AP and every time the protocol is changed or tweaked, herxes are possible. It's very important to read the material to understand what you may encounter and decide if this is the therapy for you. 😉

Peace, Maz

PS Is there a reason you are starting on doxy rather than minocycline for your scleroderma? Minocycline is the preferred antibiotic for scleroderma with its better tissue perfusion (greater lipid solubility so can penetrate tissues a little better than doxy). 

[Randy]

I lost my appetite while on Plaq, and about 30 lbs. My Mayo doc stopped the Plaq, saying it wouldn't help with Diffuse SD.

More importantly, I recall, Dr. F saying he doesn't like DMARDs because AP is trying to enhance the autoimmune system, not supress it. 

Maz and Kim – I hope I am not saying something wrong here, but that's what I recall.  Please jump in and slap me around if I said something terribly wrong.

Randy

Diffuse SD since Apr '07
AP since Feb '08
100mg Mino twice daily
Stopped Clindamycin IVs Aug 2019
"No one should profit over someone else's illness"

[Maz]

[user=223]Randy[/user] wrote:

More importantly, I recall, Dr. F saying he doesn't like DMARDs because AP is trying to enhance the autoimmune system, not supress it. 

Maz and Kim – I hope I am not saying something wrong here, but that's what I recall.  Please jump in and slap me around if I said something terribly wrong.

Hi Randy,

No, not at all – your insights are important!!! 🙂

My understanding is pretty limited in terms of this drug's chemistry…wish I had that kind of brain. As far as I understand it, though, Plaquenil is classed as a DMARD, but it's not clear whether or not it really has immunosuppressive props…more, anti-inflam props. Lyme docs use it all the time for its anti-protozoal props and are dead set against immune-suppression (to prevent bugs proliferating), so this drug is a really interesting one in this regard. There is some info on Wiki about how plaq works:

http://en.wikipedia.org/wiki/Plaquenil

“Hydroxychloroquine, by decreasing TLR signaling, reduces the activation of dendritic cells thus mitigating the inflammatory process.”

If you watch this short clip, it explains how antigens (bug toxins) are presented to dentritic cells:

http://envita.com/sections/disease/lyme/default.aspx

Plaquenil somehow slows down and modulates this process to mitigate inflam, but arguable whether or not this causes immune suppression. Designed originally to kill protozoan infections, like malaria, if there were truly immune-suppressing props, then the infection would likely proliferate and it wouldn't work so well for malaria either. Just fellow patient surmise on my part, though. 😉

Peace, Maz

[Kash]

Zoe
I did not have those side effects from Plaquenil, but I certainly have had side effects from other meds. Sometimes it is not the med, but the combo with others and our bodies are different.

My heart goes out to you with being sick and having to care for small children. I went through years of that and the fact we lived in a new area I didn't have a support system. Do you have friends, family or church you could ask for help? I have in the past had a problem asking for help, but now I am over my pride and realize there are wonderful people who want to help.

Hugs

[Zoe]

Thank you all! I did call the doc. and the nurse was really surprised by all of the pain I am in. She suggested I go back to taking 200mg.
Maz I was trying to get away with not having the Igenex lyme test, but what you have told me makes sense. the lyme test at the dr.s office was negative and I thought I could get away with that. 200 dollars is hard to come by with a family of 6!!
I'm not sure why the Dr. choose doxy. I think he is questioning the SD! Even better reason to get the lyme test. Thanks again! Zoe

[Zoe]

Kash thank you for the concern. I do have wonderful parents and in-laws that help out a lot. and a ton of faith, have been teaching VBS this week at our church. I some times feel guilty because I knew I had this before I even had kids. It has really flared after the birth of the last one, but I would never trade any of them. Zoe

[Maz]

[user=2247]Zoe[/user] wrote:

Thank you all! I did call the doc. and the nurse was really surprised by all of the pain I am in. She suggested I go back to taking 200mg.
Maz I was trying to get away with not having the Igenex lyme test, but what you have told me makes sense. the lyme test at the dr.s office was negative and I thought I could get away with that. 200 dollars is hard to come by with a family of 6!!
I'm not sure why the Dr. choose doxy. I think he is questioning the SD! Even better reason to get the lyme test. Thanks again! Zoe

Hi Zoe,

Just a couple things that might be worth knowing in advance….if you do run IGeneX labs and find you have Lyme, most LLMDs (Lyme Literate MDs) work out of network and don't take insurance. If, however, you have PPO type insurance that allows you to see out-of-network physicians, it's possible to re-claim something back from their consults…whatever your carrier will cover, that is.

The other thing that came to mind is that, if you do find you have Lyme, then LLMDs often do prefer doxy, because it can be taken in the much higher doses needed for Lyme than minocycline, which can cause dizziness in higher doses. Early dizziness with even low doses of mino or the Harvard Protocol used by sclero patients (100mg twice a day, daily) is possible (usually passes when the body adjusts), but may be worse with higher dosing and also a greater chance of hyperpigmentation. For example, a Lyme doc might use 750mg tetracycline twice a day or its equivalent in doxy, which would be 200mg doxy three times a day. Doxy and mino doses are considered equivalent (i.e. 100mg doxy = 100mg mino), so 600mg mino would just be way too high for anyone.

Hope you feel better on your lower dose of plaquenil, Zoe!

Peace, Maz

[lee]

Just a side note.  Plaquenil is in the quinoloid family.

http://emedicine.medscape.com/article/1229016-overview

It is very similar to levaquin, levaquin is a quinoloid. You are herxing.

http://en.wikipedia.org/wiki/Quinolone

[Zoe]

Lee thanks for the links. Now I don't know if I was herxing or having tendon toxicity which is an adverse effect of hydroxychloroquine. Would dropping down to 200mg in one day make it go away that fast? feel so much better today! Thanks Zoe

[amyid]

Not the same side effect, but I had a terrible itching side effect on Plaquenil. The palms of my hands and soles of my feet would itch to the point I would darn near go insane. There was NO sign of any dermatological issues, no scaling, redness, etc. Just intermittent bouts of extreme itching at various times of the day. It would cause me to pull over in traffic, walk out of meetings, get up all hours of the night, etc. It took the docs a couple of visits before he suggested I go off the plaq. He said in my low dose (only 200mg) it is rare to get side effects, but since I had been on a couple of years it had built up. I went off for 6 weeks, and at about week 4 itching stopped. Went back on and within a month it was back. Stopped immediately and it hasn't returned.

Just wanted to share in case others experience this. My dr. had to research plaquenil more to find that side effect as usually they worry about eye issues, etc. but in case anyone is itching…it is worth looking into.

DX Rheumatoid Arthritis- 3/2008, Began AP 8/2008-continued various forms of AP through present. It's long and complicated- have a question re: my protocol, just ask 🙂

[Randy]

Hi Amyid,

Your side effect to Plaq sounds just like the same side effect to estrogen (due to progesteron) that my wife experienced – her side effect was pretty well known to us as Cholestasis.  She also had this due to pregnancy (not that uncommon).  Never the less, cholestasis can be caused by drugs, and in your case it sounds like Plaq was the cause.  You may be interested in looking into Cholestasis, as other drugs could cause the same thing to you, and it is nice to have a good hunch about what's going on.

Randy

Diffuse SD since Apr '07
AP since Feb '08
100mg Mino twice daily
Stopped Clindamycin IVs Aug 2019
"No one should profit over someone else's illness"

[amyid]

Hi Randy,

When we were investigating the itching, my dr. did a full liver testing work-up. Everything came back normal. I had mentioned Cholestasis, but he believed that wasn't it. Once I quit the plaquenil it stopped.

About 6 months later, I also had a full abdominal CT and nuclear imaging scan done to check my gallbladder function. The function was low…so it made me wonder if the itching had been bile related. But I still haven't had it like before, so I don't know.

But if it happens again, I will definitely bring it up again.

Thanks for your info!

DX Rheumatoid Arthritis- 3/2008, Began AP 8/2008-continued various forms of AP through present. It's long and complicated- have a question re: my protocol, just ask 🙂

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