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Old 04-29-2009, 05:27 AM   #1
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Join Date: Dec 2007
Location: Tampa, FL
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MarilynM71 HB User
Plaquenil and rant about my RD

I was diagnosed with an autoimmune problem about a year-and-a-half ago. Sjogren's seems to be a factor according to the blood work, but my RD suspects Lupus - my ANA is outrageous, above the 1:1280 titre, and I've developed some intermittent skin issues. I've been on 400 mg of Plaquenil during this time.

It's worked great as far as reducing joint pain and fatigue, but now for the past 8 months or so, I am constantly sick - meaning, I am sick MORE than I am actually well, with a cold, sinus infection, and this month I've had bronchitis twice. Yes, twice in one month.

So in searching for more information to keep myself healthy, I've discovered that my RD should have put me on a strict diet along with recommending supplements to counter Plaquenil's suppression of the immune system. I have complained to him the last 3 visits about being sick all the time and he never made any suggestions, just moves on to his next question on the list. I am changing doctors because I feel his office is just too busy and patients are nothing more than numbers (or dollars).

Here are my questions. Do supplements truly counter the negative effects of Plaquenil or do you still find yourself getting sick a lot even with supplements and a super healthy diet? Is it safe to cut your dosage of Plaquenil in half? I'm worried that maybe 400 mg may be suppressing my immune system too much and I should pull back but not cut it out completely. And, has anyone here ever been as frustrated with getting sick as I am, and just stopped taking it and see what happens? I think given a choice between constant sickness and joint pain, I'd rather have pain and take Aleve.

If anyone can provide any suggestions until I close the bridge between doctors I would so appreciate it!

For anyone out there who is newly diagnosed, I can't stress enough to get a doctor who provides ample information without you having to pull teeth to get it.

Thanks,
Marilyn, aka, sick of being sick

 
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Old 04-29-2009, 07:00 AM   #2
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Join Date: Apr 2009
Location: Johannesburg
Posts: 221
Angel MJ HB User
Re: Plaquenil and rant about my RD

Hi Marilyn ...
i share your frustration re:sick & tired of being sick & tired.

re: meds : i stopped the meds & find myself on the other end of where you are coming from ... depending on your dx plaq need not be for ever but can help ...
i am confused ... is plaq a immuno-supp?
hope you get some 'real' insight soon ... hang in there.

 
Old 04-29-2009, 01:39 PM   #3
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Join Date: Dec 2007
Location: Tampa, FL
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MarilynM71 HB User
Re: Plaquenil and rant about my RD

Yes, it is an immunosuppressant... not nearly as much as some of the stronger drugs, but it does hinder an overactive immune system.

Two Nurse Practitioners told me people on Plaquenil are more prone to infections, and that I should be taking probiotics, something the RD never even mentioned!

 
Old 04-29-2009, 02:07 PM   #4
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Join Date: Apr 2009
Location: Johannesburg
Posts: 221
Angel MJ HB User
Re: Plaquenil and rant about my RD

aaah thanks.
sounds like you are doing the right thing by looking for a new doctor ...
what country are you in? i was given a link (not sure if i am allowed to give you a link?)
http://www.* removed *.org/directory/geo.asp
even had a listing in South Africa ... hope it can help you.
imonu-sup worry me as i live in a country rife with things like TB etc but the way i feel now i would gladly go back on meds tonight.
Good luck

Last edited by hb-mod; 04-29-2009 at 03:06 PM. Reason: Please don't post links and instructions regarding commercial websites as per Posting Policy. Thanks.

 
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