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Plaquenil aka Hydroxychloroquine

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Post by californiacat Fri Sep 05, 2008 9:19 am

Plaquenil aka Hydroxychloroquine is an anti-malaria drug which is commonly prescribed for lupus.For many newly diagnosed sle patients, this will be the first medication which is prescribed for them.When on this medication you will need to get an eye exam every 6 months as it can cause eye damage but it is very rare.I have been on this drug for over 20 years and have never had any problems or side effects from it.Plaquenil helps with joint and skin problems and helps to keep lupus at "bay."This was proven to me because the few times I had decided to stop taking it, I ended up in very severe flare ups.So for me, plaquenil is a drug I plan to now always take.I learned my lesson well!!! Very Happy

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Post by kking Sat Sep 06, 2008 8:03 am

Hi Barb , Laughing
I too am on plaquenil, and have wondered if it is doing any good. It probably is , as I think I'm in a minor flare, and don't want to know what a major flare is!
I believe (but am not a dr.) that plaquenil will also settle in the cells of one's liver, therefore, the warning to avoid alcohol. (darn) drunken
Luckily, the eyes are good as are the organs.... do you know if this is correct? Please correct me if wrong. =)
I will definately take your word, that it helps to keep lupus at "bay"
xoxo
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Post by Poppy Sat Sep 06, 2008 8:58 pm

Hi Karen:

Don't forget plaquenil sometimes takes 6 months to "kick-in" . I really think it took that long for me. So, you may have to wait a bit to see if it's working. Very Happy
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Post by californiacat Mon Sep 08, 2008 1:47 am

Hi Karen,

In answer to your question about drinking alcohol while taking plaquenil....well all medications(I believe) can affect your liver, so it is probably best to avoid drinking.....I don't drink so it is one less worry for me!!!!!But like Poppy said, it can take months until plaquenil takes affect so be patient!!And from my past experiences, I do believe plaquenil really DOES help to keep lupus at "bay" so I highly recc. you stay on it my friend!!!!Take care.
Warmly, Barbara I love you

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Post by AbsolutelyFab Mon Sep 08, 2008 6:33 pm

I just started taking Plaquenil (the generic, I believe) on July 29th. That is just under 6 weeks ago. I have been fortunate to not have any of the bad side effects and any I did have lasted only a week or so. I am on a low dose of 200mg, as I was diagnosed with "early" autoimmune/inflammatory disease or Undifferentiated Connect Tissue Disease and do not have a dx of Lupus due to my lab tests.

I was wondering if it was working yet, but as of this morning...all of a sudden....I woke up feeling so much better! cheers I will keep everyone up-to-date as to whether this is just temporary or if the meds have finally kicked in!

Beth
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Post by Poppy Mon Sep 08, 2008 6:37 pm

Hi Beth:

I know I felt just like you - about the meds working. It took about 6 months for plaquenil to finally start working for me.

I'm so happy you are feeling better - that is great flower .
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Post by socalmonica Mon Sep 08, 2008 9:18 pm

Hi there, I too am on Plaquenil and have been for about a year and a half. It took about 6 months for me too see the effects and I did have some side effects at first but I have no side effects from it now. I think it helps a lot and will definitely continue to take it. It definitely helps with my skin issues. I have morphea on my neck, which hardens the skin, and it softened my skin. I also don't get the skin rashes or the malar rash on my face as bad anymore. I say keep taking it. Monica

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Post by Guest Tue Sep 09, 2008 3:18 am

Hi Everybody!!

I started taking the generic plaquenil in June, 400mg daily, and have been having nausea almost on a daily basis. Sometimes when I first get up and then again in the evening. I do eat when I take a pill. Just wondering if anybody else has had the nausea and how long it lasted. pale

I also have these horrible brownish raised spots on my thighs that just seemed to have broken out in the last month or so. It almost looks or feels like a wart but I don't think so. Has this happened to anyone else? confused


Last edited by christines555 on Wed Sep 10, 2008 7:04 pm; edited 1 time in total

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Post by kking Tue Sep 09, 2008 5:50 am

Hi all Wink

hi Christine - On my plaquenil bottle, it tells me to take it with food to avoid nausea. If I do happen to take it without food, I will feel sick to the stomach. Also, about your brownish spots, that looks like warts but aren't.... that is exactly what got me to the doctor for my initial dx... Doc, asked 2 others to come look because she didn't know what it was... .1 of them asked me if anyone in the family had RA... My dad.... that prompted Doc to order up tests for Ra..factor... normal = 47, mine came back 747! This prompted a referral to my Rheumy.... all because of spots on my leg, which were only on one leg, only from the knee to ankle, only on the inside. weird.


I definately will stay on the plaquenil, (its been 1 year so far) and I don't drink much, but do enjoy an ice cold one occasionaly on a hot day . But those are fewer and farther between. drunken

I will take the advice given to me to stay on the plaquenil, until further notice.... but it is still hard to tell if its "kicked" in.
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Post by yardman417 Wed Sep 10, 2008 5:22 pm

Hello
I have been on plaq for 8 yrs 200 mg 2x a day, when i first started it the late evening pill would make me sick, so i asked my dr about it he said for me to try and take both pills at the same time of the morn. I tried that and for me it worked no sickness and been doing it ever since.
flower Take care RAY
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Post by Guest Wed Sep 10, 2008 7:20 pm

Thanks for all the good advice. I see my rheumy on Friday and will ask him about the sickness and whether or not I can take both pills at once and I do take them with food. I also was given Ranitidine for nausea but still have it. I might just have to play the waiting game.

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Post by Guest Mon Sep 15, 2008 1:11 am

I do take plaquenil with food and am still having the nausea not every day but then I'll have it for a couple days in a row. I am taking 400mg a day and some days I just took 200mg only so I wouldn't feel sick. It is too soon to tell if the plaquenil is doing anything, I've only started it in June. So when I saw my rheumy on Friday, he gave a script for the brand name since I am currently taking the generic brand of plaquenil. We shall see!

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Post by californiacat Tue Sep 16, 2008 2:45 am

Hi Christine,

As I have said before I have been on plaquenil for over 20 years and have never experienced any side effects from it.Ofcourse we are all different, but I had a thought that perhaps your nausea could be from the prednisone??And I may be wrong, but I thought Ranitidine was more for reflux or an antacid???Also I have never noticed any difference in the generic verses the name brand of plaquenil.I guess the bottom line is that we all react differently to medications....don't know if I was any help, but just wanted to share my experiences.I hope you soon feel better Chris and know I am thinking of you my dear friend!!!! I love you

Warmly, Barbara cheers

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Post by laura Sun Feb 21, 2010 3:02 pm

ive been taking plaquinil on and off for the past five years and have found that it does make me nauseous but my doctor said to choose between the joint pain or the nausea and so i generally kept on the pills, then they discovered that im allergic to wheat which developed from having sojgrens and this helped alot with any nausea, and apparently it is happening a lot now that people with sojgrens or sle do develop an intolerance for wheat so that maybe something to check out? also just incase obviously it warns on the bottle not to go in excessive sunlight when i asked my doctor what would happen if i did go in the sun he said that i would probably just get a rash, well even though i was wearing sun cream i ended up with a sun burn that left my whole body blistered and this would have been because of the plaquinil. as for alcohol my doctor said it was ok to drink but to have no more than three or four drinks in a day and to have a glass of water in between each drink, basically just to pace yourself. laura

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Post by christines555 Mon Feb 22, 2010 4:18 am

Hi Laura,

When I first started hydroxychloroquine I was nauseous so I switched to the plaquenil and felt a little better. It took a while before the nausea went away. My rheumatologist had also given me nausea pills to help. I haven't heard that people with sle develop an intolerance for wheat. It is something I'll have to check out.

From what I have read, the sun is our enemy and can put you into a flare let alone the blisters and rashes. I do not believe it is because of the plaquenil but because of the sun. Even wearing sun cream may not be enough to prevent it.

What kind of doctor are you seeing?
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Post by socalmonica Mon Feb 22, 2010 6:42 pm

I believe I read when I started developing Sjogrens about the wheat issues so I think it is Sjogrens not the lupus. I haven't had any issues with wheat myself so I haven't really researched it but I do remember reading something about it with Sjogrens.

I have also read that Plaquenil makes you more sensitive to sun but I do agree with Chris that the lupus itself causes the problems with the sun too so either way, we have issues with the sun.

I myself haven't had issues with Plaquenil, other than at the very beginning when I first starting taking it. It has also really helped with my skin rashes and butterfly on the face. I don't really get that anymore. I'm sure it is helping with more too, but I do notice I don't get any of that stuff anymore. Smile I have taken methotraxate and am currently taking Imuran as well. I like it better than the methotrexate so far. Just switched to it at the beginning of the year. My doc also gave me an anti-nausea med like Chris' doc did for nausea as needed. I use it for flares as needed. I also take Topomax for migraines.

Monica

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Post by laura Tue Feb 23, 2010 9:07 am

i just want to take as few medications as possible so as long as plaquinil is helping with my pain i can deal with the nausea but yes, with the wheat my gp thought maybe i had celiacs as well and said that even though my blood test was negative for that it isn't really conclusive unless i had a biopsy but he referred me to my specialist who is an immunoligist, i was seeing a rheumatologist but his sticking point was my age so the immunoligist was my doctors next step and he's been really good, any way he said that i didnt have celiacs but infact that it is being discovered that any people wjho have sicca syndrome ( the dryness associated with sojgrens) are developing wheat problems if it effects your stomach because it makes it so dry, they may not be much publication about it because he said its just been discovered recently also he worked closely with a nutritonist so mayb he got some of that from her....

in answer to chris i see my GP most of the time my main specialist is the immunoligist but if i have other problems such as the hernia and ive had problems with my toes i see specialists in those fields but thats only for the duration of the related issue. i dont regularily see the immunologist because hes said just to see my gp unless its something major and we're just treating everything symptomatically which is all we can do,

oh Monica its good you could take the treatment for migraines from what ive heard their are horrible my mum suffers with them badley but for some reason cant take the medication.

and yes the sun is terrible its such a big change as when i was getting discovered i was learning to surf and i have to walk to and from uni everyday in australia the sun is inescapable haha

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