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.

912 Members

7,373 Posts

0 Online

PolarBear427 03/16/2011

Hi!

I am pretty much a newbie I guess since I haven't posted in this group much ... yet. I have only recently been diagnosed (sort of) with Lupus. My main diagnosis so far has been fibro, then UCTD (Undifferentiated Connective Tissue Disease). My new rheumy is going to be having me do more specific blood tests in a few weeks to see if things can be clarified.

In the meantime, she is starting me on Plaquenil. I took it in 2004 when I was initially diagnosed with UCTD and it didn't do anything for me. She wants to try it again thinking that it may help now. She said it may even help me wean off of the Prednisone. She also said it will also act to protect my liver. I am on sooo many medications that I really hesitate to start another one. I was wondering if anyone else has been given this by their rheumy for those reasons and has it helped?

Thanks for reading this. I appreciate any help you can give me. :0)

Also, anyone else have a lot of swelling, especially in your legs, ankles? Have you tried compression stockings, the zippered kind? My pain doc has written a prescription for me to get thigh-high compression stockings to wear at night. My legs hurt soooo much all of the time. I am also on diuretics.

Ok, well, thanks again!!!

Hugs,
Sheri

deleted_user 03/16/2011

Thanks for the advice on the stockings will defo look into it. I have hepatic lupoid and fibromyalgia, amongst other things I take prednisolone and plaquenil, when I initially went on the plaquenil about 15 years ago it was in the hope that it would reduce my prednisolone levels and have taken varying amounts of both medications over the years. I have been told by my Rheumy that the prednisolone is to reduce inflammation and control things, the plaquenil is an antimalaria used for inflammation so I take it that inflammation would include organ inflammation. Hope this helps a little and that things improve for you soon...let us know how you get on with the sexy stockings? :-) Warm hugs x

deleted_user 03/16/2011

Hi PolarBear. My rheumy has me on plaquenil and cellcept, and until just today, I've been on prednisone too. I've been weaning off prednisone and I'm hoping I won't flare it like in the past.

I've been doing really good on the Plaquenil and cellcept. At first, I didn't think either helped me, but the inflammation and swelling I had in my hands is not nearly as bad as it used to be, and I don't have the terrible pains I used to have. I started taking Plaquenil in September and cellcept in November or December (can't remember). If your rheumy recommends it, it is worth a try!

Wishing you success in your treatment and sending warmest regards your way! : )

deleted_user 03/16/2011

I hope you feel better, I am a newbie and just started taking prednisone and then added plaquenil, the prednisone is helping i have not noticed anything from the plaquenil yet, but they said it could take weeks to work. I have noticed an increase in my depression and anxiety, is this how you feel? anyone? also does anyone have advice on what pain meds are good? right now I take percocet, but i would love to know if there is a better one. :-)

bookkeeper64 03/18/2011

I've been on prednisone since I was diagnosed in Sept 07. We have tried all kinds of other meds including plaquenil and increasing my imuran. I had allergic reactions to plaquenil and increasing my imuran just started affecting my liver instead of my kidneys like the lupus did. I just can't seem to be able to get off the prednisone. As for the compression stockings, the kidney clinic recommended that I try them for the swelling in my legs. By the end of the day I could barely even bend my ankles which made it very difficult to go up and down stairs in my basement suite. I have been wearing one pair that my parents bought for me since Monday. I take them off to go to bed at night. My legs don't get tired now and aren't painful by the end of my day. I just bought the trouser socks one over the counter. As I'm in Canada, it may be different up here. Over the counter ones cost $28 but prescription ones cost $110. I was told to make sure that the socks are two fingers below the back of your knee so that it won't cut off circulation. If they work for everyone like they do me, I would happily recommend anyone with swelling problems in their legs to use them. I like them so much I bought another pair. I hope something helps for you.

deleted_user 03/20/2011

The plaquenil helped me although it took at least six months before I could see a difference. I was then able to wean off of the prednisone.
I hated the side effects of the prednisone, but between it and methotrex, it did slow the progression. They initally gave me 5 years and that has been over 12 years ago. I've had good and bad days, but I'm thankful. Just make sure to do the field vision test prior to and every six months while on the plaquenil. I wish you much success.

Join the Conversation