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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bny806 01/28/2013

Hello Everyone! I have a mystery illness, but all dr's seem to think it's autoimmune.. the rheumy initially said sjogrens, but now not sure.. anyhow.. they put me on plaquenil (I also do IVIG, as whatever I have has caused numbnes, tingling, muscle weakness etc). When I was on the plaquenil loading dose (i believe it was 300mg per day, it was amazing, i had NO joint pains and my energy seemed better too..

They then had me back down to 150mg a day and after a few weeks noticed my energy level didnt' seem as good, and my joints are pretty darn painful again.. .. they accidently kept me on the 300mg for about 6 months (an oversight by my dr).. anyhow, what is the "normal" protocol/dosage that most people take.. and if it worked so well at 300mg, but I can't be on that high of dosage forever, what is the next step?

deleted_user 01/29/2013

Mostly the dosage is based on weight. I am 90lbs and I am 200mg per day and have been for almost 3 years. I remember my rheumy doing the calculation to make sure I wasn't going to take too much

deleted_user 02/05/2013

I am on 200mg per day and I noticed when I forgot to take or didnt get my prescription over xmas and was off for 5 days I bout died. I hate to think i am reliant on drugs but I have now come to terms with the fact that when I dont take it I feel terrible.

My Rheumy when I last saw her said as the disease moves and fluctuates I may be able to cut back or may have to increase my dose but its all dependant on how im feeling etc. I would suggest that if your not feeling the greatest on a lower dose to ask to increase slightly and see if it helps. No reason for you to be in pain or feeling weak when it clearly worked before. :)

If they really want to lower the dose , try other therapies, I find swimming really relieves my pain but I also recognise if I have a really busy day one day the next day I better have off. Be nice to your body, massage, exercise in moderation!

GeLaGeE 02/05/2013

I just started treatment on the 24th of Jan this year and my Rheumy put me on 200mg twice a day. But that is also based on how much inflammation and my lab numbers. I go back in 3 months not sure what will happen then.

MButterfly 02/05/2013

I was on 300 mg for more than 2 years. If it works, really all you have to do is keep a regular appt with your eye doctor for every six months or so. Unless, of course, you have terrible side affects.

My dosage goes up and down depending on symptoms - but never under 100 mg....and rarely over 600 mg.

irisg806 02/06/2013

ive been on 400mg for quite a while now, 200mg pills twice a day

bny806 02/06/2013

Thank yall so very much!!! yea, I thought it was working - as one day I realized i was feeling better and had NO joint aches.. I thought it was just coincidence, it was hard to even remember what joint aches felt like ( i thought maybe i was imagining them haha).. and then when we backed down on the dosage they came back with a vengence..

I will get down on tthe floor with my kids and it feels like I have glass in my wrists!! Ouch!!!
Thank yall so much for the information.. I'm glad that it is telling that it helps - as I feel so lost in limbo land, i have a hard time with it!

deleted_user 02/07/2013

I always heard that the dosage was based on your weight.

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