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enjoylife
Regular Member


Date Joined Sep 2013
Total Posts : 151
   Posted 5/10/2014 11:38 PM (GMT -6)   
Hi all, been following this thread through out the months. I was first diagnosed with Sjögren's syndrome then confirmed for SLE lupus. I usually post on prostate forum because my husband is considered stage 4 prostate cancer. He's been through so much.

When I found out why I was so tired at least it made sense of it all. Plaquenil is a wonderful drug, I've been in its for the last three months. I did have a major flare up this week. I need to ask you, to me a flare up feels like someone took your body and slammed it against the wall. It can't function and I am severely exhausted. I was doing so good but stress at work and at home hit hard this week.

Thanks for letting me vent.

Enjoylife, aka Cathy

Lynnwood
Veteran Member


Date Joined May 2005
Total Posts : 7723
   Posted 5/11/2014 12:13 AM (GMT -6)   
Yup, sometimes it feels like a big ole' wall slap. Good description! Take care of yourself - food, rest, pampering....you'll feel better shortly, I hope!
Lynnwood, Lupus & Sjogren's Moderator, Dx: 2002
DIAGNOSING LUPUS & LUPUS RESOURCES
"Life is far too important to be taken seriously." - Oscar Wilde

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 5/11/2014 12:32 AM (GMT -6)   
That's a pretty good description. Slammed in a wall, then ran over by semi convoy with a few hundred in it.

Welcome to the "my antibodies think I'm a giant germ" area of HW.

Sorry your husband is battling such a nasty disease. I hope they can fix him up soon.
Just pamper yourself for a few days and this flare will get better.
Joy
Lupus, Fibromyalgia, Glaucoma, Asthma, Hypothyriodism, Sleep Apnea, OA, Depression, Allergies, and benign familia tremors

When life throws you lemons....
Pick them up and throw them right back at them! :))

Angel96
New Member


Date Joined May 2014
Total Posts : 1
   Posted 5/11/2014 2:30 AM (GMT -6)   
Hello everyone,

My 17yr dtr is the one diagosed with this rear form of lupus called panniculitis. The lesions firms showed up right before or around her 16th birthday. The dr's original dx was lipoma, then cellulitis, then erythema nodosum when she had a bad flare in August 2013 when she had soar throat, fever, and the round lumps to her back buttocks arms and legs. The lesions resolved by Oct to Dec 2013. Then 1 lesion showed up the size of a nickle this January and my youngest dtr punched her there and now it has grown. The lesion is no longer round as it was before it is flat and bruised looking. She was out on plaquenil as the first choice but she could not tolerate the generic brand as she had vision changes. So, now she is on dapsone 25mg but I am not sure if she is tolerating this medication either at this time. She is having a fever of 103.9 f, chills, nausea, and dizziness the last couple of days. But I wanted to share a website came across while trying to look for alternative herbal/natural ways to control these outbreaks and i actually bought her some pills but it does not seem to be for Lupus panniculitis. But can be for SLE, discoid and 2 other types of lupus not panniculits. Here is the website ---shop.merryclinic.com --- I hope this helps some. If anyone finds something that may work for my dtr that is more herbal or natural please reply to almar807@hotmail.com or here..

Does Anyone here with lupus panniculitis get random fevers?

Thank you

enjoylife
Regular Member


Date Joined Sep 2013
Total Posts : 151
   Posted 5/11/2014 9:40 PM (GMT -6)   
Thanks Lynnwood and Couchtater your description is right on in regards to flare ups. At least now I know what is causing the misery. Like I mentioned, I couldn't have the little energy I do if it weren't for the plaquenil. But this last flare lets me know to try and reduce stress in my life and right now it's impossible. Today I'm better, btook both of your advice and rested, although had to do chores but rested in between. I realize that's the way it's going to be at times. Tough.

Angel, I don't know how to respond to you because I don't have that much experience with this. Hope you get advice.

Hugs to all and sincere thanks for being here.

enjoylife
Husband 58,dx 2005 psa 27, with bone mets
tumors on spine, 2011 paralyzed due to spinal cord compression, 3 vertebrae removed
radiation, two compression surgeries 2010/11, 3 month rehab, able to walk with aid.
taxotere, psa 161, 2011,
start zytiga, 2012, psa 11, psa 44, stop zytiga start xtandi 7/2013,
several small tumors in lungs, bladder, lesions on liver.
xtandi, psa 18.5, start jevtana 4/14
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