Plaquenil/ hydroxychloroquine

Jenny

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Anyone tried Plaquenil (hydroxychloroquine)?

It's for reducing inflammation in autoimmune diseases. Because my clinic has messed up (again) with ordering the low dose naltrexone I'm supposed to be starting, I thought I'd get this out of my chest full of drugs and and give it a go while I'm waiting for the LDN.

It's supposed to work well with azithromycin so I started that as well (and also Sam-e, which I've tried before and thought promising).

After one week I've had a remarkable improvement in pain. Before, almost any movement was painful, but now I'm almost pain free. So it could be due to any of the large number of other things I'm on, but since the Plaquenil is supposed to work on inflammation it's likely to be that. It's supposed to take a couple of months for full effects though.

I'm still bed bound much of the day so it hasn't had much effect on weakness and flu-like symptoms.

You're supposed to have eye tests if taking it for a longish period, but I'll have to stop it when the LDN arrives, so won't be on it longer than a couple of weeks.

Jenny
 

Kati

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Jenny I have been on plaquenil for a pre-existing conditon- for the last 15 years. (Got sick with ME/CFS since Nov 2008) If I was to stop plaquenil today, I believe I would much worse than what I am right now- They also use plaquenil in cases of lyme disease.

FYI I am taking the 400mg dose at bedtime- or in the evening and take with a bit of food not to upset your stomach. It's taken a few weeks before I got full effect. Good luck and please keep posted here on how you're doing with it.

On a different note , I wonder if Plaquenil would suppress XMRV activity, so if you had thoughts of getting tested, it might be best to get tested BEFORE you start the drug. I will get my results tomorrow- not sure if Plaquenil affects it or not.
 

Jenny

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Thanks Kati.

I'll only be on it for a short while as it's not compatible with LDN. I take 200 mg twice a day - I did get a bit of nausea at first, but that got better when I had a bigger breakfast with it.

I've been diagnosed with Lyme, babesia and erlechia (sp?) but I'm not convinced about the diagnoses and been on IV and oral abx for nearly 3 years with no improvement.

Jenny
 
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Two weeks ago I became 80% or more blind because of the Plaquenil. I am 62 and had a complete opthamology exame the first week in June. I was blind in one day on July 24th, same year. No advance warning at all....I just lost my sight in one day. I understand it is irreversible. Although I have read that this only happens to be 3 to 4 % of users, I am now one of those. Do not take Plaquenil or Hydroxychloroquine unless you accept the danger associated with it. It was all going so well because it alleviates pain, but at this price, I would not have done it again. Find something else.
 

WillowJ

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I went off it because my doctor said it was getting into the risk zone for eye problems, but best as I can tell (it takes a few months to see the +/- effect) my pain increased and my PEM increased, after I stopped. These were the same things I thought it helped, when I had started it.
 
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Kati, I was wondering how you are doing now? Are you still on the plaquenil? I'm thinking about trying it because my brother came down with a very serious auto immune disease CREST. One doctor was only giving him two years to live. I had to take him to and from a rheumatologist at Johns Hopkins and he was put on plaquenil and it put him into remission. He's been fully functioning living a full life now for 10 years. Since he's had success with it and I figure we are genetically very similar I was thinking about giving it a go. Would love to hear any updates you have regarding effects of plaquenil. Thanks! Laura
 

Kati

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Kati, I was wondering how you are doing now? Are you still on the plaquenil? I'm thinking about trying it because my brother came down with a very serious auto immune disease CREST. One doctor was only giving him two years to live. I had to take him to and from a rheumatologist at Johns Hopkins and he was put on plaquenil and it put him into remission. He's been fully functioning living a full life now for 10 years. Since he's had success with it and I figure we are genetically very similar I was thinking about giving it a go. Would love to hear any updates you have regarding effects of plaquenil. Thanks! Laura
I stopped Plaquenil eons ago prior to Cytokine testing and haven't needed to get back on it.
While it is a good drug, it is a good drug for what it's indicated for and CREST syndrome, lupus, Sjogrens and other auto-immune conditions will benefit from it. As a reminder it will only work if taken over the long term. In ,y case it took 5months to take care of my small joint pain. And you need a yearly eye exam while on it because it has some serious eye toxicity.

i do not believe Plaquenil has been formally tried (ie clinical trial) for ME, and it seems to me that the ME experts do not feel it's going to help us as a patient population but there will always be exceptions to that because of misdiagnosis and other factors. Like many other drugs including Rituximab, it works on a subset of patients but not all.

Best wishes.
 

JAH

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i do not believe Plaquenil has been formally tried (ie clinical trial) for ME, and it seems to me that the ME experts do not feel it's going to help us as a patient population

Best wishes.
Dr. Montoya is using it as part of his toolkit of treatments for CFS. He uses anti inflammatories in conjunction with anti virals, and Plaquenil is one of the anti inflammatories that he uses.

I've tried it ( and am retrying it) and it has done nothing.

JAH
 
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Thank you all for your input. Yes, I read Dr. Montoya was prescribing plaquenil for ME and that piqued my interest bc of my brother's success with it. My brother was also on it 1 1/2 years. Jah, how long have you been on plaque nil? I guess we all respond differently to different meds/treatments due to the myriad of ME subsets.
 

xrayspex

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I have been intrigued about plaquenil as I have sjogrens and chronic pain....but I don't tolerate meds well most of the time so hesitant. I don't know if this would be any indication of how I might do with it---but I tried drinking tonic water after read about quinine being used in civil war times --thinking it might have homeopathic positive effect lol but it actually makes me feel bad, more like a herx
 

xrayspex

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Anyone tried Plaquenil (hydroxychloroquine)?

It's for reducing inflammation in autoimmune diseases. Because my clinic has messed up (again) with ordering the low dose naltrexone I'm supposed to be starting, I thought I'd get this out of my chest full of drugs and and give it a go while I'm waiting for the LDN.

It's supposed to work well with azithromycin so I started that as well (and also Sam-e, which I've tried before and thought promising).

After one week I've had a remarkable improvement in pain. Before, almost any movement was painful, but now I'm almost pain free. So it could be due to any of the large number of other things I'm on, but since the Plaquenil is supposed to work on inflammation it's likely to be that. It's supposed to take a couple of months for full effects though.

-----------
s

Jenny--fyi I took z-max for first time like in march/feb for pneumonia--and side effect was that my chronic neck pain and other pain in my body like teeth, back, feet--was incredibly reduced for a couple month
 

xrayspex

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Two weeks ago I became 80% or more blind because of the Plaquenil. I am 62 and had a complete opthamology exame the first week in June. I was blind in one day on July 24th, same year. No advance warning at all....I just lost my sight in one day. I understand it is irreversible. Although I have read that this only happens to be 3 to 4 % of users, I am now one of those. Do not take Plaquenil or Hydroxychloroquine unless you accept the danger associated with it. It was all going so well because it alleviates pain, but at this price, I would not have done it again. Find something else.
Adam--so sorry to hear this! how long had you been on it? someone told me that risk would most likely be on a higher dose and over years of using it?
 

Mel9

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Jenny--fyi I took z-max for first time like in march/feb for pneumonia--and side effect was that my chronic neck pain and other pain in my body like teeth, back, feet--was incredibly reduced for a couple month
I have just , accidentally, found that tonic water has completely removed my pain from Lyme ME. Others have found that?
 

xrayspex

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I have just , accidentally, found that tonic water has completely removed my pain from Lyme ME. Others have found that?
Mel interestingly when I tried tonic water about 5 years ago (after reading how quinine medicinal and I do better with homeopathic doses of things anyway) I felt worse--maybe its like herxing
I could try it again in very small infrequent amounts and see what happens
love the taste :)
 

knackers323

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is there anything that works similar to plaquenil with out the associated eye issue, or that may work better?

its suppossed to take at least a few weeks before any improvement is seen but i get benefit within hours of taking 100mg of plaquenil.

ive seen this effect a number of times now.

it must quickly reduce inflammation. i was completely exhausted and very tired yesterday. i took 100mg dose and with in a couple of hours i wasnt tired anymore and the overwhelming exhaustion had greatly lifted.

after previously taking it for about a week i was able to go for a bit of a easy jog with no payback, depression lifted, felt light and almost normal intead of that heavy drained feeling. eager to see more results i upped the dose and must have lowered my immune system too much as i got/increased what appeared to be an ear/teeth infection and went off it.

id say it is no cure but definately worth a try. as always, everyone seems to respond diferently. i wonder if the fact it helps gives any indication on what is going on in the body and where to look/test for further answers?