Plaquenel Party

[Corella]

I am most peeved to say I have a rash across my cheeks from my little walk I did yesterday around the lakes. Looks like a malar rash but I dont think I have lupus, just sero neg sjogrens.

Do any of you get a rash on your cheeks? I hope it goes by saturday as I look like a dolly with painted cheeks.

[CAT1962]

Yes, I have Primary Sjogren's...no Lupus Dx. And I do get the strange malar/butterfly rash. The Rheumy I see says I "will eventually have RA or Lupus"...I'm not counting on it....

[Joe S.]

A rash across my face that looked like a moth sent me to find a rheumy. The quick Dx was lupus. after a couple of years of tests I was told Sjogren's.

[mshistory]

I am most peeved to say I have a rash across my cheeks from my little walk I did yesterday around the lakes. Looks like a malar rash but I dont think I have lupus, just sero neg sjogrens.

Do any of you get a rash on your cheeks? I hope it goes by saturday as I look like a dolly with painted cheeks.

My mother has acne rosacea and also gets the exact same rash when she goes out in the sun, so I think there are several different possibilities for malar rashes besides Lupus. Her rash can be treated with mild topical steroids like Desonide or hydrocortisone - since they are anti-inflammatories, I wonder if they would work for rashes caused by AI disease as well?

[Diane54]

I have been on Plaquenil since February of 2011.............it has been a God sent....my flares have been far and few since...I think I had one in June! My knees don't ache in the morning and my joint pain has subsided immensly! (Fatique is still a problem) Anyhow, Congrats! Hope it works as well for you!

[Julie]

I started Plaquenil 13 days ago.  I have been offered it for years and always turned it down due to the fact that I have horrible side effects to darned near every medication that I try.  The doc finally decided that it's time to give it a try.  Knock on wood..  I have had no side effects and hope it stays that way.  The only thing different that I have noticed is that I am constantly burping, but I think I read somewhere that gas can be a side effect until your body gets use to it.

I take 200mg twice a day, but can't swallow pills.  So...I crush it up and put it in yogurt.  I have to say, it is VERY bitter that way, but it's the only way I can.

I haven't had any alcohol with it yet because I was finishing up an antibiotic recently.  I do like a white russian a couple of times a month when we go out to eat.  I'm hoping that it won't interact with the Plaquenil.

Good luck to you !! 

[kwolfsheimer]

I don't think the Plequenil affected my vision that quickly-- don't know.  The problem was that my eye doc didn't do a baseline BEFORE starting the Plaquenil, so I may have just had bad peripheal vision before taking it. But he was very quick to tell me to get off of it. I was in the throws of other side effects so it didn't take much convincing.  You do have to go in to see an eye doc on a routine basis with this drug so if your rheumy didn't tell you, set up an appt and make sure that you tell the eye doc that you are taking Plaquenil. He/she will do a baseline color vision test and a peripheal vision test.  There have been cases of retina detachment, so you want to go in every three- six months for a check.

The rash that I had all over my palms was very noticable. Seems to be a side effect, but one that my rheumy said was a side effect that warranted taking me off.

I wish I had something for the joint pain -- so hold fast on the Plaquenil.

[Corella]

I had my baseline test done with the eye specialist at the hospital, he wants me to get another one done in 6 months and then every year.  I have an open appointment with him as he has said he will cauterize my tear ducts if my plugs fall out.

I went for a walk this morning, its so hot today and I have come back feeling all weak, tired and dizzy.

My rheumy ges booked up months between appointments, but always phones if I need to speak to him and he tells my GP what bloods to run and what to do.

But I have so many questions to ask, in fact I wouldnt mind saying 'I dont want this illness, you can have it' But I guess that doesnt work.

Countdown till Plaquenil day!  I am nervous of the gas and diarrhoea, I am having visions of total embarrassment here. (if you get my drift)