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kathlene
New Member


Date Joined Jul 2008
Total Posts : 4
   Posted 7/12/2008 7:04 PM (GMT -7)   
confused   Hi all,
        I feel like first saying..where oh where do I start! I was first told I had a trace of lupus after I had given birth to my second child while still in hospital. I had never heard of it. It wasn't until a year after my third and last child that I started getting treatment for it.
         My memories of my childhood were the nights my Mom would sit up rubbing my leg joints and using the heating pad.  Of course my Dr. told my Mom that it was growing pains..lol. I got sick easily. At age 6, I was hospitalized for what they thought was my appendix...and come to find out that I had a very severe kidney infection. Thank goodness they figured this out before taking me into surgery. I remember being very scared...and my Dr. had brought the surgeon in to meet me. I have a hard time really remembering much of my childhood. When I was pregnant for my second child, my joints were much more painfull and I knew at 24 it was not growing pains! Of course they did an ANA and it was positive. But was going to recheck it after I gave birth. It ended up that my son had a tumor and so I was going to give birth at a bigger hospital..a teaching hospital. That is when I first heard of it.
          Before I go into to much..I will say my father has 9 sisters and all of them have some form of autoimmune diease. I even lost one aunt when she was 42 , it was attacking her lungs. I am now 46....It has pretty much been impossible for me to hold down a job more then a couple months and now a few weeks. I have applied SSI. I first appiled for SSD but I am 3 credits under...getting disability. Doesn't seem fair...how can I build credits when I am unable to hold a job.
           Here I go rattling off...lol..I'll just start by telling you all my dx in order of dx...first was..SLE, you have it , you don't..you have a rare form. Then came sjogrens syndrome, raynaunds, firbromyalgia, myofasical pain.
          Of course there is so much inbetween but at this moment I am trying to research Rituxan for treatment of my sjogrens syndrome..ect. My Dr. is working with my insurance company now. So of course I am trying to find out all I can on it.
          Would love to hear your input whether it is worth the risk. I have so much to say..but of course just typing this much has worn me out..plus I have been having hot flashes and sweating..24/7.
  I am looking forward to getting to know you all. I will write more later..
Thanks so much and take care!
GENTLE HUGS,
Kathlene

AlwaysRosie
Veteran Member


Date Joined Jan 2005
Total Posts : 8616
   Posted 7/12/2008 8:01 PM (GMT -7)   
(((((((( Kathlene ))))))))

Hugs back at you! Welcome to the forum. So glad you found us. You are in a great place and there are some really special folks here.

I'm sorry I don't know anything about Rituxan . . . but others will be along in the next couple days.

Just wanted to say hello.

Blessings!

In His Grip

AlwaysRosie           "We can't control the waves, but we can learn how to surf!!"

Psalms 139

Co-Moderator - Lupus Forum

UCTD, Inflammatory Arthritis, Diverticulosis, (recent dx - Sjogrens, Crohn’s 4/08)

Clickable Links:  Lupus Resources    Lupous.Org   Lupus Criteria (4 of 11)   Lupus Chapter Locator


Barbara Lee
Veteran Member


Date Joined Sep 2003
Total Posts : 2889
   Posted 7/12/2008 8:48 PM (GMT -7)   
Hi Kathlene:

I've tried rituxan to treat my lupus. I had three IV infusions of the stuff. Unfortunately it didn't make a difference in how I felt. I had troubles with my platelet count dropping as well as my red blood cells. Once they dropped my Rheumy immediately stopped my infusions. I have several things going on with me and I'm thinking that my medications aren't helping much. I've got the lupus/RA/fibro/blood cancer, I think the cancer just makes things 100 times more difficult for my body.

I hope if you decide to try the rituxan works for you and you begin to see sounds of healing quickly from it. The infusions took 4 1/2 hrs to get it. They need to infuse it at a slow rate so that you don't have any side effects. If I can offer anymore help about rituxan, please don't hesitate to let me know.

Best Wishes,
Barbara
dx fibro, SLE, glaucoma, cateracts, bells palsy, depression, migraine headaches, gastreopaersis, chronic anemia, RA,MDS (Blood Cancer). Tons of meds.


Ginny
Veteran Member


Date Joined Feb 2003
Total Posts : 5514
   Posted 7/12/2008 9:35 PM (GMT -7)   
Hello Kathleen,
 
I don't have any experience with Rituxan either.  I'm glad Barbara was able to give you her experience with it.
 
Wow, for all your father's sisters to have an autoimmune disorder of some sort is profound. It certainly runs in your family and therefore makes you much more likely to have one too.  I'm sorry to hear of your pain and your frustrations with getting disability.  So many of us have been or are right now, dealing with it too. 
 
Don't hesitate to ask any question you need to, or to vent, cry, laugh, and be a part of our lupus family.  Welcome!
 
Ginny
I can do anything through Jesus Christ who strengthens me. I have learned in whatever state I am in,to be content. Phillipians 4:11-13

34 years old. Diagnosed with lupus in 2000. Fibromyalgia, anti-phospholipid syndrome(APS)(stroke),Sjogren's, Raynaud's, seizure disorder-(miraclulously disappeared!), Libman Sach's Endocarditis, vasculitis, sacroiliitis, arthritis (neck) . Prednisone, Imuran, Coumadin, Clobazam, Amitriptyline, didrocal, Cozaar, calcium, Cykolokapron, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus


joinery
Regular Member


Date Joined Oct 2007
Total Posts : 323
   Posted 7/13/2008 7:01 AM (GMT -7)   
Welcome Kathleen, I'm sorry your dealing with all this!!! Hope you can find the right meds that will help. I don't know about Rituxan. SSD might take time to get I was turned down once the 2nd time I got a lawyer they may be able to help you. Hope you start feeling better soon. Take Care... Debbie
Asthma,Lupus,H.B.P.,Dermatomyostis,Gastrparsis,Acid Reflux   
                Panic Attacks,Osteopenia,Thyroid  
  Reglan,Protonix,Synthroid,Plaquenil,Quinacrine,Flexeril,Zetia,Zoloft,Xnanx,Celebrex,Abuterol,  
  Advair,Diovan,Actonel,Prednisone on and off Eye Drops,VitaminD.     
 
 
 
 


hippimom2
Veteran Member


Date Joined Jul 2005
Total Posts : 5403
   Posted 7/13/2008 8:29 AM (GMT -7)   
Hi Kathleen and welcome. I'm sorry you have been through so much and that you still haven't qualified for disability. From what I've heard it can take a very long time and several appeals. I think the disability people hope that you will get worn down and will give up trying.

I'm glad you found us - we are very supportive here and it's nice to come to a place where you know people can really relate to what you are going through. Take care and I look forward to hearing more from you.
Diagnosis:  UCTD (lupus) 2006; Raynauds 2006; Sjogren's 2006; lupus symptoms began 2003; UC 2008; CFS 1991; Mono 1985
Meds:  Plaquenil 400mg; Prednisone 5-10mg; Tramadol 100mg 3-4x daily; Doxepin 25-50mg; Prevacid; Evoxac; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain; Artificial tears

 

Clickable:  LUPUS INFORMATION & LUPUS RESOURCES.

Please allow HealingWell to continue helping others by donating: http://www.healingwell.com/donate/

 

Co-Moderator: Lupus and CFS Forums



kathlene
New Member


Date Joined Jul 2008
Total Posts : 4
   Posted 7/13/2008 9:56 AM (GMT -7)   

Thank you all so much!! My doctor actually wants me to try rituxan more so to handle my sjogrens syndrome. It seems it is what gives me the most trouble beside the fibro of course these days. I feel my lupus has been better since I have had a hysterectomy..I do use a estrogen patch so I don't have to take oral, because you have to take a much larger dose if you take it orally. I have to change a patch twice a week and I take ville-dot 0.075. I have read that they think hormones have an effect with Lupus. And I think they are right. I have found that trigger point injections do help with the neck pain we all have.

Gosh, I wish I wouldn't tire out so fast so I could write more..in time I suppose.

Take care,

Kathlene


AlwaysRosie
Veteran Member


Date Joined Jan 2005
Total Posts : 8616
   Posted 7/13/2008 12:04 PM (GMT -7)   
Hi Kathlene,

I sit in a recliner with my feet up and use a laptop. I've got a thin flat book under it so it doesn't get too hot on my thighs . . . . If you have any way of saving up all your birthday, christmas, mother's day etc. to get one . .. its been a huge blessing to me. I have a terrible time sitting at a desk to use a computer. I know I am really, really fortunate to have one . . . Wishing all my Lupie friends had one too.

Blessings!

In His Grip

AlwaysRosie           "We can't control the waves, but we can learn how to surf!!"

Psalms 139

Co-Moderator - Lupus Forum

UCTD, Inflammatory Arthritis, Diverticulosis, (recent dx - Sjogrens, Crohn’s 4/08)

Clickable Links:  Lupus Resources    Lupous.Org   Lupus Criteria (4 of 11)   Lupus Chapter Locator


Audrey Ann
Veteran Member


Date Joined Jul 2005
Total Posts : 815
   Posted 7/13/2008 1:14 PM (GMT -7)   
Greetings, Kathlene! Welcome to HW! I am sorry to hear of all your struggles and hope you can find good advice from the many members here. I learn new ideas and concepts from this site everytime I visit. Everyone here is very helpful and very knowledgeable.

My prayers are with you!
Prayers,
Audrey Ann
 
Lupus and RA and LOTS of Medications!
 


 


MJLD
Veteran Member


Date Joined Jul 2007
Total Posts : 1048
   Posted 7/13/2008 1:51 PM (GMT -7)   
Kathleen,
Welcome to healingwell. I hope you can get the right meds to get you feeling better. My doctor was going to use Rituxan one time for cerebritis. But, she said it would only be as a last resort because of the potential harmful side effects. Do your homework. God Bless You, Judy
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