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.
Hi. My name is jc. I believe I joined this group some time ago, then dropped it because I found it a bit much to keep up with several boards..and, I've been a member of the chronic pain board for some time. ( I have PHN from recurrent shingles.
My blood work for Lupas is, so far, negative..but, I've had false positives for syphilis a number of times. ( I guess that's become an acceptable marker?)
I've been being treated for Lupas for some time by my Immunologist..who declared a few months back that it was time to treat me for SOMETHING, rather than to continue to watch me die. ( complications from malnutrition.)
Anyway...the prednisone worked wonders for my hands and feet, which were making life pretty unlivable for me. I have finally reached the point with plaquenil that I'm, for the most part, down to only 5ml of prednisone a day.
This all leads to my question. I am exhausted. All of the time. I feel like I have no strength for anything. I've been told this could be from the plaquenil. I was wondering if anyone else has had this reaction to it.?
I never have stopped being nauseated by it...at about three four months of use.
If it did affect you this way..did you continue to use it? Did it ever get better?
Thanks for reading this long ramble.
And..thanks in advance for any answers.
Jc
My blood work for Lupas is, so far, negative..but, I've had false positives for syphilis a number of times. ( I guess that's become an acceptable marker?)
I've been being treated for Lupas for some time by my Immunologist..who declared a few months back that it was time to treat me for SOMETHING, rather than to continue to watch me die. ( complications from malnutrition.)
Anyway...the prednisone worked wonders for my hands and feet, which were making life pretty unlivable for me. I have finally reached the point with plaquenil that I'm, for the most part, down to only 5ml of prednisone a day.
This all leads to my question. I am exhausted. All of the time. I feel like I have no strength for anything. I've been told this could be from the plaquenil. I was wondering if anyone else has had this reaction to it.?
I never have stopped being nauseated by it...at about three four months of use.
If it did affect you this way..did you continue to use it? Did it ever get better?
Thanks for reading this long ramble.
And..thanks in advance for any answers.
Jc
I wish you luck,
Roni
I guess I kinda knew it could just be the Lupas.
Since the exhaustion is relatively new compare to the illness..
I think I was hoping the plaquenil is the cause..because then I could just stop it and feel less tired.
So...if it's part of Lupas...does it not get better between flares?
And...has anyone else had flare after flare, so that it almost seems non stop for years ( three ..almost four, in my case ?).
Of course I've researched it..but they never tell you what the folks who have it can.
Thanks again.
Hugs..jc