New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

Southpaw11
New Member


Date Joined Aug 2009
Total Posts : 14
   Posted 8/23/2009 8:35 AM (GMT -7)   

Hi,

I am new to the forum, not new to the autoimmune monster, however.  I had RA for 14 years, dx’d in 1996.  Suffered many deformities.  Then suddenly sjogren’s symptoms showed up about 5 years ago, and now July 2008 lupus symptoms showed up and by April 2009 lupus kidney failure caused me now to be on dialysis.

 

I am having a hard time with the diagnosis but taking it one day at a time to stay sane.  I really felt RA had done enough damage and taken enough of my life when the other things showed up, so now I was angry and fed up with autoimmune disorders and the fact there is no cure.  

 

I do have a question however, how do you cope with the skin problems of lupus?  My skin is a mess.  Always looking like it has a rash. I am taking prednisone so I suppose the prednisone could be the culprit as well just didn’t seem that bad before the lupus kidney dx and also the hair loss is really scary.

 

Well, I have tons of horror stories like that one but don’t want to depress anyone so will keep it light and short.  Hope you guys are having a super great day and hanging in there!  Hope to hear from you.

 

Thanks,

Southpaw


aimsgirl16
Forum Moderator


Date Joined Jun 2008
Total Posts : 1469
   Posted 8/23/2009 8:45 AM (GMT -7)   
Hey southpaw! Wanted to welcome you to HW! This is a great support group and great family.So sorry you are having to deal with all of this. I don't have any advice but hope you stay around and let us get to know you better! I know people will come by that have great advice!!

Amy

 

21 yrs old, Systemic Lupus , lupus nephritis , raynoids , Carpal Tunnel

Cytoxan, Prednisone, Lupron, Zofran, Mesna, Lisinopril,  Ambien, Flexeril, Ultram, Darvocet, Ferrious Sulfade, Calcium, Vitamin B12, Aspirin 81 mg, Vitamin C

The Old Normal is no more so I and we have to find a New Normal...

 


Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7019
   Posted 8/23/2009 9:23 AM (GMT -7)   
Welcome to HW!

Lupus itself can be the cause of both rashes and hair loss - our rashes are usually triggered by the sun and our hair loss often has to do with what meds we are taking. But that is the gross generalization!

What are your meds? Does skin get better w/kidney illness if we drink more water? Does kidney involvement affect the hair?

I bet someone will come along who knows the answers to those questions - we are usually more active during the weekday evenings than on the weekends!
Lynnwood, Lupus & Sjogren's Moderator
Life is far too important to be taken seriously. - Oscar Wilde, 1882


suejill
New Member


Date Joined Aug 2009
Total Posts : 1
   Posted 8/23/2009 10:44 AM (GMT -7)   
Hello,
I am also new here.  It seems that autoimmune diseases interact with each other.  I was diagnosed with lupus in 2005, since then have developed Reynauds Disease and Cryoglobulinemia.  My sister had and subsequently died from complications of lupus in the 70's.  I am convinced that the doctors really don't understand lupus any better than they did then.  They just have more sophisticated medications to try on us.  I don't blame the rheumatologists, but you the patient are your own best advisor.  You know what works and what doesn't - you know how you feel.
I am presently struggling with sores on my toes - they don't heal, and there is a constant scab especially on my large and second toe.  The biopsy came back "related to lupus".  I am trying to find a cream, gel or lotion that will allow me to wear shoes.  Anyone have the same?

Southpaw11
New Member


Date Joined Aug 2009
Total Posts : 14
   Posted 8/23/2009 10:21 PM (GMT -7)   
Thanks guys for the warm welcome.
 
Thanks Suejil.  Also, I get the sore too only they are in my mouth and they too never seem to heal.  This is all new stuff.  Supposedly, the folic acid they give us is to help with that.
 
Also the dietician at the dialysis center says we need protein to help us heal. the average person is to have 60 grams of protein but for me she has me eating 90 grams of protein and drinking protein drinks, etc.  Lupus seems similar to diabetes in that respect.  I know my mom had diabetes and started getting sores that wouldn't heal.   I have a sore on the roof of my mouth now and so irritated by it. can't wait until it heals.
 
I am wondering if some neosporin won't help you since it is on the skin..  ask the doc for suggestioms.  but totally agree with you about them not knowing much more than they did in the 70s.  My hands look like I never took anything for the RA and I have taken everything available including the rituxan and cytoxan.  I got meningititis with the cytoxan so they stopped it.  they are now not treating me with any immunosuppressants for that reason.
 
Anyway, hope you find relief soon. take care everybody.
 
New Topic Post Reply Printable Version
Forum Information
Currently it is Sunday, December 04, 2016 3:31 PM (GMT -7)
There are a total of 2,732,719 posts in 301,047 threads.
View Active Threads


Who's Online
This forum has 151202 registered members. Please welcome our newest member, Ed Ski.
325 Guest(s), 8 Registered Member(s) are currently online.  Details
notsosicklygirl, dacarte3, Michael_T, Gear, astroman, MauiViv, gilly2, Tall Allen


Follow HealingWell.com on Facebook  Follow HealingWell.com on Twitter  Follow HealingWell.com on Pinterest
Advertisement
Advertisement

©1996-2016 HealingWell.com LLC  All rights reserved.

Advertise | Privacy Policy & Disclaimer