Lupus Support Group

Lupus is an auto-immune disease in which the immune system cannot distinguish between threats (like viruses and bacteria), and healthy cells and tissue. As a result, the body produces antibodies that inflict cell damage, most commonly targeting joints, skin, kidneys and the nervous system. Join the group and find support for coping with lupus.

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amethystchic 11/03/2009

Hey all!! I hope everyone is having a great day!! I have a question to ask anyone on plaquenil. After taking it, does it make you feel all of sudden really tired? I recently started taking it in September and it seems like after about 5-10 minutes of taking it, I feel super tired and sleepy. I have read about the side effects and I do get the stomache discomfort but is the tiredness normal? I have to take two pills in the am and two pills i the pm...sometimes I almost want to just skip the dose in the morning because it makes me feel worse than if I don't take anything. I've also tried to take 1 pill every couple of hours and that still doesn't prevent the fatigue feeling....I even tried taking all four at one time....let's just say not a great idea!!! So if anyone can please enlighten me on what's going on or have had the same experience...please let me know....thanks!!

Gentle hugs to everyone...Phoebe.

deleted_user 11/03/2009

Hi there. No it never makes me drowsy. I have never though it help[ed me either. hugs Marilyn

deleted_user 11/03/2009

Yes, it amkes me so tired. I usually take one in the morning and one at night. Today I am going to take one in the evening and one at bedtime. It makes me dizzy also. I have been on it about a month. So far, I don't see any difference, but I guess it takes time.

tomsmom05 11/03/2009

After five months on it I haven't seen any improvement. I have had a lot of dizziness/ lightheadedness and the fatigue is worse. Maybe I need more time on it?

Allisonc79 11/03/2009

I just wish they could find something to help the fatigue. I think I would be so much more capable to handle this illness if they did. Thats the only thing that holds me down.

deleted_user 11/03/2009

Hi.
Are your capsules 200mg each? If so, I have never heard of anyone being on 800mg of plaquenil. That seems like a very high dose to me. Im not a dr. but you may want to make sure your not taking too much. You can look up the therapeutic doses online and it will tell you the highest dose you can take. Normally the dose for lupus is 400mg daily. Maybe that is why you are so tired after taking them. I doesnt normally cause drowsyness but pred. causes me to be tired sometimes too. Drugs can affect everyone differently. Maybe try taking it with food and see if that helps.
hugs

earthwalker 11/03/2009

I have been taking Plaquenil for quite a few years now, I don't think it's the Plaquenil making you tired....just good ol' Lupus. Taking it with food stops you feeling sick, and yes it takes a long time to kick in...I think about 3-4 months of continuous use. Your dose does seem high if the tabs are 200mg. I take 400mg a day and now 2 x Cyclosporin....not to mention all the other stuff (I swear when I walk you can hear the rattle!). Check in with your doc. if your symptoms persist, you may need a change of dose.

Mel1967 11/03/2009

Hi Phoebe,

I have been on plaquenil for many years and have not experienced a sudden onset of fatigue after taking it. While those of us with lupus never truly find anything to relieve fatigue, plaquenil is suppose to help with fatigue rather than create more from what I understand.

I'm confused about the dose you are on. You stated you take 4 pills a day? As Melissa stated plaquenil typically comes in 200mg tablets and 800 mg really seems like an aweful huge dose. The most I have ever taken is 400mg, I am currently on 300mg.

You might want to double check with your rheumy or prescribing doctor to inquire about your current dose and advise of your symptoms.

Hugs,
Mel

deleted_user 11/04/2009

Which doctor prescribe you the med? the primary or rheumy? I think your rheumy should know the dose by heart. Did your doctor tell you to take 2 tabs twice daily or you base on the label on your med bottle. I think there is probably some error or misunderstanding or miscommunication going on. I don't think there is a 100 mg tab, unless it is specially compounded. You definitely need to double ck with your doctor soon!
I have been on that for many many years and don't have sudden tirenss with it. Actually it helps with fatigue. If i don't take it, I will know later on during the day since I will feel very tired.

HarleyRyder 11/04/2009

I started taking Plaquenil in June. I take 200 mg twice per day with food (at lunch and dinner). I have noticed a BIG improvement in my fatigue and achiness, in fact I actually get a slight burst of energy just after taking it. I still have days where I feel crappy but my symptoms have improved and it's not every day. I'm grateful for any improvement. My biggest issues now are tendonitis in both ankles and unbelievable jaw pain. I'm seeing my rheum today so hopefully he'll have something that can help with that. I already take Mobic daily. Hope all of you are having a good morning!

amethystchic 11/04/2009

Hi all..thanks for all your responses!! I do take four 200mg tablets a day...when my rheumy started me on this drug, she said that she always starts her patients on the highest dose possible and then tapers them down as their symptoms improve! She says she does this to speed up the time it would take for the drug to take effect. I don't know....maybe i'll put a call into the office to double check with her....

deleted_user 11/04/2009

I agree with all the other comments about the dosage that you are on...you are taking too much!!! the usual dosages is 200mg/2X/day 1 in the a.m 1 in the p.m....you are obviously taking way too much & the toxicity to you liver could be serious....call your doctor to confirm this....also note that Plaquenil should be prescribed according to body weight.

goldengirl3 11/04/2009

I would still contact another doctor to clarify the doseage. I does not hurt to get a second opinion. Even a pharmacist helps me by answering my questions for drug interactions I just started planquinel and my rhummy told me the most I could go was 200m. tablets 2x daily. anymore was not good. I feel energized on the predisone. the plaquenil is too early to tell, but I don't feel tired, just alittle dizzy. stomach pain, nausea. good luck.

deleted_user 11/05/2009

I am very concerned that you are taking way too much plaquenil. I just googled the dosages of it and all of them say 400mg is what is prescribed for adults. It also says you should never double your dose. I would call a pharmacist asap and ask about taking 800mg daily. If they say this is toxic and NOT suggested I would immediately cut down to 400mg until you see another rheumy. Not all rheumies know what they are talking about or are good. we have all had negative experiences with some. Also, when I was very sick flaring, I asked my rheumy if I could up my plaq. dose instead of going on pred and he said I was on the highest dose possible (400mg). We are all just concerned about your safety. Please call a pharmacist or even the FDA drug department. You could be overdosing and causing irreversible damadge to your body.
Hugs

amethystchic 11/05/2009

Thanks everyone for your concern...i'm a little scared now...i'm calling RIGHT NOW!

deleted_user 11/05/2009

Im sooo glad you read this and are calling. Please let us know what happens
Hugs
Melissa

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