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  • #300325
    JBJBJB
    Participant

    I've been on 400 mg plaquenil since last Dec (2007). My symptoms have been under the control. Some literatures recommended not to take this medicine while on AP. Others seemed to not worry about it.

    Interesting thing is “Plaquenil is an anti parasite medicine developed to treat malaria. Plaquenil is slow acting, so any relief in rheumatic cases may take 3 to 6 months. Plaquenil does not appear to suppress the immune system greatly” http://www.cmo-usa.com/drugs.html

    Is mycoplasma is also considered as some type of parasite??? Since it does not suppress the immune system greatly, would this also be helpful to get mycoplasma under the control???? I am just trying to reason it with myself.

    Thank you in advance for your input and thoughts!!!

    JB

     

    #312984
    Maz
    Keymaster

    [user=266]JBJBJB[/user] wrote:

    I've been on 400 mg plaquenil since last Dec (2007). My symptoms have been under the control. Some literatures recommended not to take this medicine while on AP. Others seemed to not worry about it.

    Is mycoplasma is also considered as some type of parasite??? Since it does not suppress the immune system greatly, would this also be helpful to get mycoplasma under the control???? I am just trying to reason it with myself.

    Hi JB,

    A few of us here have been on plaquenil in combo with abx. BonnieLou just mentioned that she was on it and John was also on it and weaned off over time. I used it as a recommended Lyme treatment briefly in the beginning, because of its anti-protozoal (malaria is a protozoal infection) and Lyme cyst-busting properties. Although, I had to come off it when I started getting visual disturbances after 4 1/2 months. I didn't have any ill effects stopping cold turkey, but it was still early days.

    So, no problem, as far as I know, with plaquenil being contraindicated with the tetracyclines (or the macrolide abx that I was also taking at the time…Biaxin). It's probably more a question of whether it's contraindicated with any of the other meds you're taking, but Dr S probably would likely have spotted that, if so.

    As far as I remember, that the biggest concerns are to watch for visual disturbances (blurred vision, blind spots, flashing lights)and macular degeneration (regular eye tests every 6 months), as well as possible toxicity (should get liver enzymes and kidney function tested periodically). There may be other things, but these are the side-effects that I remember as being uppermost in my mind, at the time.

    Just adding an edit…you asked if mycoplasma was some type of parasite. According to Dr Brown and other researchers, it can't strictly speaking be called a bacteria or virus…it sort of has its own catagory, being a cell-wall deficient myco-bacteria. But is it a parasite? Yes, because anything that depends on a host for its existence is a parasite. It's not protozoal in nature either, though, as far as I know…that's why protozoal infections need other meds (like Flagyl or Plaquenil). However, again…if memory serves, I do believe Doc Brown felt that some DMARDs had some antipathogenic properties that might actually have some affect mycoplasma (like plaquenil and gold), but cautioned that their overall long term use and buildup of toxicity often outweighed their benefits.

    Peace, Maz

    #312985
    JBJBJB
    Participant

    Maz,

    You confirmed everything in my mind PRECISELY!!! Everything I am wondering, you explained it to a T. Thank you so much!!! 

    I just started to reduce it from 400 mg to 200 mg. I hope I will eventually take it off. I just started adding fresh garlic in my diet. It's going to kill all the parasite :roll-laugh: big time!!!  

    #312986
    mom
    Participant

    JBJBJB,

    I went a rheumatologist about a year ago to sell her on the AP and she tried so hard to get me to get on biologics even though I had drug induced lupus from remicade 3 years prior.
    Anyway, she said we can meet half-way and I can be on antibiotic (doxy) as long as I also take plaquenil. I got the rx and filled it but never picked it up. A year later, I'm same or worse that a year ago. So, I often wonder if I should add a DMARD to my regimen.

    Also, I see an opthalmologist yearly since I have Sjogren's as well as RA, and he said that recently it was decided that plaquenil eye damage is so rare that you should only need yearly check ups.

    #312987
    JBJBJB
    Participant

    My MCTD was also drug induced. I was told I had drug induced Lupus in the beginning and later was told MCTD…. and now I am heading to systemic scleroderma. :crying:

    Thanks for the information. It's always good to know what other doctors said. I have talked to Dr. S in Iowa and also professor N. about plaquenil. They both think I should wean it off once I see some improvement. I actually reduced it from 400 mg to 200 mg two weeks ago…. I can feel the pain now…:doh: herxing better, more pain…

    I never realized how true “no pain no gain” is until I started AP. Let's hope this AP will work.

    #312988
    Michele
    Participant

    Hi there JBJB et al,

    Dr. S recommended that I stay on Plaquenil and prednisone until I was feeling better too. I really didn't think 1 mg of pred and 250 mg of Plaquenil was doing much for me because I was always in pain. When I backed off of it I really can't say whether I herxed more or that those two meds were actually suppressing some of the pain afterall. But I sure had an increase of pain for several weeks after going completely off of those. I've stayed off of them.

    It was interesting the eye specialists comment when I was going on Plaquenil and when I went off it. Going on it, he said only 5% of people have eye problems with plaquenil and if you have an eye exam every 6 months you can catch any problem before it becomes harmful. At the six month checkup when I reported being off of plaquenil, he was very happy and said it was much better for my eyes to be off of it!!!

    Another interesting thing I noticed was that the “air starvation” I so often had really subsided after going off plaquenil. It started about the time I started on plaquenil. So I do wonder what other things were going on with that medicine. Maz mentioned the anti-protozoal effect and I have wondered if I was herxing in my lungs with Plaquenil.

    JB, how is your rib cage pain? Has that eased off? Have you ever noticed an “air starvation” sensation with Plaquenil or has it only been rib pain?

    Michele

    #312989
    bonnielou
    Keymaster

    Hi JB — as Maz said, I am on Plaquenil and minocycline. I also started at 400 mg, went to 300 mg (alternated 1 tablet, 2 tablets every other day), and I am now down to 200 mg daily. My husband is an ophthamologist, and he also thinks eye complicatons are very rare — though they do happen.

    I am not sure how long I will stay on the plaquenil. I feel really good right now and I am reluctant to change anything. And I know my rheumatologist will be happier if I stay on the plaquenil. So I am going to hold steady right now — maybe by late summer I will cut back to 100 mg — just take one every other day. We will see.

    Bonnie Lou

    Bonnie Lou
    RA 02/07,AP 10/07
    Minocycline 200mg MWF; Plaquenil 100mg 3 days/week
    Fish Oil, Ubiquinol, Turmeric, Vit C (2 grams) , MultiVit, Magnesium, Astaxanthin, D3 (5000), probiotics and a daily dose of yoga!

    #312990
    Parisa
    Participant

    My husband has been on plaquenil for a year.  His lyme doctor is using it as a cyst buster and also because of its antiprotozoal effects (babesia).

    #312991
    Michele
    Participant

    Hi Parisa,

    With the babesia, did your husband experience “air starvation?” If he does, has he noticed Plaquenil's effect on this symptom? I'm still trying to figure out how that fits into my overall health picture.

    Thanks!

    Michele

    #312992
    Parisa
    Participant

    Air hunger is a little hard for him to quantify as he has pulmonary fibrosis which causes shortness of breath.  I don't think plaquenil is enough on its own to tackle babesia, you have to take it with other meds like mepron, malarone, artemisinin, etc.   I do know that he was a little withdrawn/down when he started it something that I always attribute to a babesia herx for  him as he seems to get that way whenever he starts a new babesia type med.

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