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Having issues with Plaquenil

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Posted 9/19/2011 6:05 PM (GMT 0)
I have been on this med now for 7 days and I do really not like it. I notice that I have lost my appetite and I use to be the type of person that loved food. Now when I do force myself to eat I get stomach pains. I know this is a side effect but I really can’t afford to lose weight I am 5'2 and weigh 90 pounds so I really don’t want to weigh any less. Not only have I completely lost my appetite but I have been having dream after dream every night remembering all of them. I never dream like this I don’t know if its from the med or just the overall stress of having to take the med.   Also I noticed the other day I took my Claritin medicine and I was passed out by 6:00pm I felt awful. Am I over reacting? Is it too soon to be having these issues? Should I switch from the generic to the name brand? This is all so new to me, I really want to give this med time to work but I am scared my appetite will never come back. I am going to address all this with my Rheumy at my up coming appointment.
Posted 9/19/2011 9:42 PM (GMT 0)
My appetite dropped a little during the first week on plaquenil. It did come back though.
Are you drinking milk with it? Are you taking it after you finish eating?
I take zyrtec with mine and don't experience any drowsiness.
The fatigue might be from the lupus flaring and the claritin just pushed you over the edge.
It took a full month before I starting feeling any difference from the plaquenil.
Posted 9/19/2011 11:05 PM (GMT 0)
I make sure to take my medicine after I eat. I hope my appetite comes back it just sucks to suddenly not be hungry anymore. I am from an Italian family and we like to eat! I guess maybe I was just overwhelmed with fatigue as I had an active day Saturday which consisted of being outdoors in the sun. Guess I will just wait and see what happens. Another thing I have noticed is that I have this lingering chest pain now, . I always had chest pain that comes and goes but this seems to stick around much longer.
Posted 9/20/2011 12:14 AM (GMT 0)
It might be a bit of heartburn or gastritis. Make sure though to wait 2 hrs before and 2hrs after taking the plaquenil to take an antacid.
Watch that sun. I find I feel worse when I've had too much of it. I'm prone to itching like crazy after too much sun.
Are you using a broad spectrum sunscreen and UV protective clothing (hat too)?
Posted 9/20/2011 12:58 PM (GMT 0)
I am having the same issues with Plaquenil...I am following the instruction...taking with food and a glass of milk...and I have been having the same problems with appetite..the only time I eat is when I have to take the medication... I am hoping to even out a bit..but I have had to discontinue the anti inflammatory because the stomach issues were so much more severe...

good luck
Posted 9/20/2011 1:16 PM (GMT 0)
Many people have stomach issues for 7-10 days, then things settled down.

Maybe try it with another liquid rather than milk? I don't have an issue with milk, but don't regularly drink it, so I wouldn't try it with plaquenil. Perhaps the issue is from drinking milk when you don't usually do so?

Just wondering...hope it gets better quickly!
Posted 9/20/2011 3:27 PM (GMT 0)
Couchtater: I think you are right about it prob being heart burn because it is a differnt type of chest pain than what I normally have which is sharp when I breathe in. Also I notice I am getting itchy too, see I have excema and I heard from somewhere that this drug can actually make skin conditions worse. My excema has been gone for awhile so I do not want it to come back. I do use make up with SPF but I never really do anything else.

mrsbubulz: I find myself only eating also when I take the med and its more of a "oh I have to eat" rather than a "I am hungry".

Lynwood: I hope you are right about these issues calming down.

I had high hopes for this med my appt is at the end of the month I told myself I would stay on the med until then to see what my doc has to say about all this.

Posted 9/20/2011 3:29 PM (GMT 0)
Are you taking the generic or the name brand? I had what I call "red polka dots" all over when I tried the generic...
Posted 9/20/2011 5:53 PM (GMT 0)
I too have no appetite. Before I became this ill I was a happy 198lbs food lover. I now weight 169. NONE of my clothes fit and at the moment I do not have the energy to go clothes shopping. I did not make the connection between the medication and loss of appetite, I thought it was just part of the lupus flare up. I take my medication in the middle of dinner as I have milk issues and stomach issues and it seems to buffer any painful stomach pain.
Posted 9/20/2011 10:38 PM (GMT 0)
Lynwood: I am taking the generic. I do not have red bumps just itchy skin for now.

Sickinteral: your loss of appetite can be from the med you should mention it to your doc at your next appt.
Posted 9/21/2011 5:31 AM (GMT 0)
LAWCHICK, I had tummy problems, including cramping and diarrhea, when I first started taking Plaquenil. It can last up to 3 months, but I endured it and am happy that I did. It's still a good idea to discuss your loss of appetite with your doctor.

And please let me reiterate what couchtater said: Stay out of the sun. If I want to flare, all I have to do is stand out in the sun for a few minutes and boom. It's my number one enemy.

Good luck with the Plaquenil.
Posted 9/21/2011 2:22 PM (GMT 0)
Patty the whole thing about the sun is I never really paid much attention to it. I never really thought about gettting sick in the sun. I have noticed that I would feel sick while out in the sun like very dizzy and stuff but I always just thought it was from being out in the sun you know like getting sick from heat. I never really attributed it to lupus as I was never officially diagnosed with having it until recently when my DR put me on plaquiline and said lets see if this helps.

Its great that you stuck to the plaquenil. I also plan on sticking it out to as its taken me so many years to get here.
Posted 9/21/2011 4:30 PM (GMT 0)
LAWCHICK, I hope that now you will pay attention to the sun. We lupies should never go outside without putting on sunscreen and covering up. It's a real pain, but well worth it, as being in the sun can cause a flare.
Posted 9/21/2011 5:38 PM (GMT 0)
Ah the sun....the last time I was in it was for about 20 minutes in early august...my entire body where the sun hit my skin broke out in this horrendous rash... and I felt like I was getting a flu....

I have decided to become a vampire...LOL

I am trying to stick it out with the Plaquenil as well...I too am taking the generic for it.. but I have had no spotty rash...however I have noticed that my livedo reticularus ( the red lacy pattern to you skin) has become more pronounced.. My rhuemy told me my symptoms may increase before I see improvement..

Is that true..has anyone else had the symptoms increase before the Plaquenil really kicked in
Posted 9/21/2011 5:55 PM (GMT 0)
Hi mrsbubulz: I have noticed that my lymph node pain has gotten worse and also I feel more fatigued. I was hoping I would feel less fatigued but then again I havent been on it all that long. I had a kinda scary moment at work while I was sitting down I turned my head to look at something and I got really really dizzy like the whole room was spinning. I have to do a long drive tomorrow and now I am kinda nervous.
Posted 9/21/2011 6:57 PM (GMT 0)
Hey Lawchick,

yeah...definitely more tired...and my seizure activity as actually increased since I have been taking the plaquenil...and my aches and pains have increased as well..but she told me it will get worse before it gets better....lets hope it gets better

If you don't feel up to the drive...don't do it....please just be safe
Posted 9/21/2011 7:53 PM (GMT 0)
Now that I have been diagnosed with lupus, I can see where I may have been having flare-ups and not put all the pieces together. They lasted a few months and Dr could not explain why or what was happening. I am 42 now and this last flare has lasted about a year which has given me plenty of time to see all the right dr's while clearly sick. I had the spins for 6 weeks!!!! It was like I had two too many drinks. As I was recovering (spinning less) I had to take a cab everywhere or catch a ride. I hate the spins.

Lawchick have a plan B if the spins start.

Safe travels.
Posted 9/21/2011 11:17 PM (GMT 0)
Monday, I didn't take my usual time off to rest and do nothing. I spent the day running errands. I'm paying heavy for it now with a pain flare and fatigue. It's my first flare in months. :(
Posted 9/22/2011 1:09 AM (GMT 0)
Oh, you flaunted the "only do 1/2 a day" rule, didn't you? Now you have to rest for several days....lupus is a bugger!

Hope you feel better soon,
Posted 9/22/2011 10:50 PM (GMT 0)
I had diarrhea with the generic so I switched to the name brand. It takes my appetite away just a little bit. I take 400 mgs. I should probably take it first thing in the am. I could stand to lose some weight. LOL.....
Posted 9/26/2011 12:29 AM (GMT 0)
I take plaquenil too, but i think it is the lupus. when it flare, its on all of the reliable sites that lupus causes loss of appetite and loss of weight when active. I too have lost a bit of weight
Posted 10/1/2011 2:06 AM (GMT 0)
I was just diagnosed with MCTD last week. I have elevated RNP (1.6) and ANA is borderline. The tests for scleroderma, sjogrens and lupus are negative right now. I feel so overwhelmed and confused! It seems like the disease is a mystery disease and no one knows what will happen next. As of right now, I have mild symptoms; GI symptoms, inflammation, joint pain and fatigue, but nothing I can't live with. The rhumatologist wants to put me on plaquinil when I go back next month and I have mixed feelings. Is it worth all the side effects? And does it actually slow the progression of MCTD? Or does it just help the symptoms?

Also, has anyone tried a different diet? I saw a homeopathic doctor who suggested the paliolithic diet- mainly meats and veggies and no wheat/gluten/processed foods. His theory is all the processed foods may cause an inflammatory response in our bodies. He also gave me supplements to help with all my digestion issues. It's only been 2 days, so no real results yet.

I'm trying to get as much information as I can. Any information/feedback is greatly appreciated!
Posted 10/2/2011 4:53 PM (GMT 0)
Hi Need2Know:

I was apprehensive also before taking this medicine. I thought to myself "I can live with the fatigue" or "We'll the pain is so random is it really worth it?". I thought about the side effects and thought I'd rather just deal with it than to get sicker from a medication.

Right now however I am happy I went with the med. When I first started it my stomach did really bother me and I had other issues such as feeling dizzy or foggy like. Also I felt more fatigued. However I can say that my stomach is better along with the other issues I mentioned in this post and my fatigue has gotten better. I noticed the other day when I looked at the clock and saw it was 11pm and I was still up! I am not 100 percent as I still get pain but I think this drug can take a few months to feel the full effect.

Trust me I was soooo scared as I never took major medication before but with the coaching of both my Rhuemy and PC I took the plunge and right now I'm happy I did.

Just be sure to get eye exams every 6 months. Some say once a year is ok but I plan on going every 6 months.
Posted 10/3/2011 10:21 PM (GMT 0)
I was scared to take it also. I let it sit on my night stand for about two weeks before I finally started to take it. At that point, I could barley function and thought how much worse can it get. I have been on it for about a month. As long as I take it with food I can stomach it. The real issue is that I am never hungry and now at times have to force myself to eat. I was a plump 198lbs (5'9) and now 167. I have been in a steady flare that started April 2010 and hit its worst right before I went on meds a month ago.

I have changed my diet (No gluten, no dairy, no eggs and as little sugar as possible as well as eating as organic as possible.), added acupuncture and started the meds all about the same time but I have noticed a steady up swing in my health. Yesterday I did all floors in my house and made dinner!!!! I have also been able to work more as well. I am scared to get to optimistic as if it turns bad again I will be upset.
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