plaquenil questions

Hey all,

Just teleconferenced w/ Dr K yesterday. He's putting me on plaquenil. The thinking is that since my autoimmune issue is out of control and my ANA is through the roof, plaquenil could help lower than inflammation. In addition, it would be a prophylactic for Corona and would help w/ any infections if there were any we dont know about. He's adding clarithromycin since they work so well together and it would also be antiinflammatory, and we could kill any residual spirochetes if there are any. Win/win/win.

My question is that the reason I stayed away from plaquenil in the past is that my rheumy warned me that there's a link between plaquenil and psoriasis. Psoriasis runs in my family, and I did not want to poke the beast. Dr K did not think it was an issue, and I trust him. But was curious since so many on here have tried it, did anyone on here develop psoriasis while taking it?

In addition, what do you guys think of clarithromycin? Any side effects I should be aware of? I've never tried a macrolide. My biggest concern right now is that I may actually have SIBO and thats responsible for the uptick in my autoimmunity, so I'm wondering if now is the wrong time to be experimenting w/ abx. Anyone else develop gut issues after using it?

My SFN has spread full body. It literally feels like someone poured gasoline on my body and lit it on fire, even my face ears and nipples burn today. I'm lathering myself in CBD lotion and lidocaine/ketamine cream. Happy friday right

Post Edited (dcd2103) : 5/1/2020 5:59:25 AM (GMT-6)

Girlie said...
Sorry to read your SFN has worsened... that sounds horrible!
Nerve pain is the WORST!

Biaxin has the risk of long qt

I didn’t have any issues tolerating it.

And you should get your eyes checked on Plaquenil.

Thanks! Long qt?

I believe that Long QT is also a possible side effect of Plaqueil. There are many drugs that list this as a possible side effect.

First, I am also sorry to see things have gotten worse for dcd. Hoping you find some relief and methods/information that can help.

This, I do not believe is a coincidence, but I saw above the comments about a long QT and have been experiencing an irregular heartbeat after taking Plaquenil in mornings. Have stopped zithromax , which has caused it past. But my heart has gone crazy each morning for a few minutes since starting Plaquenil. Couldn't figure out why as it has seemed to normalize in last few months.

Used clarithromycin years ago and had problems with it, but that doesn't mean you might, dcd. But mine was more like an allergic reaction, not stomach.

dcd - First with you, good your creatinine is normal. Another point in your favor is, from all I have read over the years, chronic kidney problems do not cause back pain, but kidney stones, infection can. So that could be more of an acute problem, which can be taken care of. And it could be inflammation. Or the inflammation is simply causing back pain. This is not minimizing your situation by any means, but meant to give you at least some hope and peace of mind.

As far as the chemo, your call to make. I've read a lot about that with stem cell. It could be a good idea, but, as you have mentioned, very big step and has its concerns. But you will do what you have to do, and I respect that. Your in-depth research abilities will see you through. If you are like me, the worry and anxiety with all sometimes makes my mind go south. which is not saying yours has. You will know what to do and when to do it. Your intelligence will override the anxiety or worry.

Haven't been on plaquenil long enough to know if it will help. I do believe it is causing the crazy beats with my heart in mornings. Will watch that. Had a hand and elbow x-ray today, and it was normal for my age. That doesn't mean it's not RA as early RA problems may not show up on an x-ray. Wish he had done an ultrasound.
The orthopedic doctor said it just doesn't seem like autoimmune, but it could be too early to tell. New blood tests taken yesterday may help see if something is developing in blood now.


Either way, if it is RA, which I pray it is not, it means it is very early in process. In 10 days they are going to do x-rays of my neck and back, which have hurt for a long time, which means it wouldn't be early.

I've ordered Cytoquel, a product I used to use to help with cytokines/inflammation. Did problems you are now experiencing just jump on you all at once?

Seems stress really messes with me also as far as pain goes. It doesn't make sense for there to suddenly be pain in my right hand, feet, one shoulder and amplified back pain. Who knows? No one.

Hang in there and stay as calm as you can - not that I do. I can see your mind works like mine, as you want answers and a correct path to getting better NOW. Totally get that.

running wild said...
Is it possible for Plaquenil itself to cause a herx? Feel bad - seem to feel lightheaded, dazed when I take it. Is it also killing?

I believe Plaquenil was originally used for prevention/treatment of malaria.
So, it’s possibly hitting Babesia.

Dr H prescribes it for lyme and co - not sure if he’s wanting it to target Babs.. or if he believes it’s also good for bart and/or lyme.