MEAdvocacy.org Update and a Call for Continued Support
“I have tried raising money by asking for it, and by not asking for it. I always got more by asking for it.”
Discuss the article on the Forums.

Plaquenil/ hydroxychloroquine

Discussion in 'Antivirals, Antibiotics and Immune Modulators' started by Jenny, Feb 17, 2010.

  1. Jenny

    Jenny Senior Member

    Messages:
    1,247
    Likes:
    258
    London
    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
     
  2. Kati

    Kati Patient in training

    Messages:
    2,924
    Likes:
    4,655
    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.
     
  3. Jenny

    Jenny Senior Member

    Messages:
    1,247
    Likes:
    258
    London
    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
     
  4. adamslamb

    adamslamb

    Messages:
    1
    Likes:
    1
    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.
     
    JAH likes this.
  5. lnester7

    lnester7 Seven

    Messages:
    1,433
    Likes:
    1,395
    USA
  6. Jenny

    Jenny Senior Member

    Messages:
    1,247
    Likes:
    258
    London
    I tried it for a while. Did nothing. This thread is nearly 5 years old by the way.
     
    lnester7 likes this.
  7. lnester7

    lnester7 Seven

    Messages:
    1,433
    Likes:
    1,395
    USA
    Yeah I see is old but some get well then relapse and comeback but what got them into remission does not work anymore. So you never know if things apply still or not.
     
    catly likes this.
  8. WillowJ

    WillowJ Senior Member

    Messages:
    3,614
    Likes:
    4,054
    WA, USA
    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.
     
  9. LauraB

    LauraB LLB

    Messages:
    4
    Likes:
    2
    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
     
    catly likes this.
  10. Nielk

    Nielk

    Messages:
    6,138
    Likes:
    7,958
    Queens, NY
    I have been on Plaquenil for 1 1/2 years for RA. It has not helped with my ME symptoms.
     
  11. Kati

    Kati Patient in training

    Messages:
    2,924
    Likes:
    4,655
    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.
     
  12. JAH

    JAH Senior Member

    Messages:
    330
    Likes:
    243
    San Jose
    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
     
    catly likes this.
  13. Hanna

    Hanna Senior Member

    Messages:
    570
    Likes:
    563
    Jerusalem, Israel
    I have been taking Plaquenil for a year -not for my ME/CFS, but as part of my Lyme protocole. I noticed it has contributed to lessen my level of pain without doubt. Not more.
     
  14. LauraB

    LauraB LLB

    Messages:
    4
    Likes:
    2
    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.
     

See more popular forum discussions.

Share This Page