[poodiesmom]

Hi. I have been diagnosed with lupus for nearly 5 years. I just finished 5 consecutive days of IViG infusions(8 hours each day). It was decided that I try IViG because my white blood count was virtually non-existent due to autoimmune neutropenia. I also have Sjrogens, Raynauds, and vasculitis. Has anyone on this site ever done the IViG infusions?

Nancy in Texas

 

[KarolH]

Hi Nancy in Texas. I am Karol in New Jersey and YES, I have done IVIG but not for Lupus. I had this when they thought I had Multiple Sclerosis. Notice I said "thought" as I had this dx for 3+ years before they finally got it right.

Anyway, welcome to a great place. I hope the IVIG went smoothly for you and will help the wbc count come up some. Sounds like you have a few auto immune things going on and I know you will find much needed support here from people that will know what your dealing with first hand.

Hope to get to know you better and come join us in the chat room sometime.:wink2:

You may want to post a Introduction of yourself in the Newly diagnosed section. You can go there and see what some of the other members have said in their posts.

 

[onetay]

Hi Nancy,
Welcome to the site and I am sorry but I have not had the treatment you discribed. I did want to stop in and welcome you. I hope to see you in the chat room sometime.

 

[cmfinnis]

Hi nancy!

Yes! I have had ivig - as you have described - at high dose for 5 days. But now i'm supposed to be having it every three weeks for one day. . . .

I have lupus (diagnosed 2004), antiphospholipid syndrome, and hypogammaglobuliansemia, pernicious anaemia, asthma.

The high dose ivig made me feel great - it took about 3/4 days as I can recall (it was in may 2006) and the fatigue went massively down as did my serositis. I also have neurological, CNS, lupus which affects my brain and spinal cord so i'mm hoping the next lot helps this.

I'm like you and have immune deficiency issues, so for me cyclophosphamide and rituximab are out as my immune system couldn't cope with them. So I'm on pred, aza (previosuly MMF) and they now want to add in the ivig again. To tell the truth I'm a bit nervous about it and have put it off for over a year (!) but now I'm feeling fed up with my lack of quality of life and can't wait to give it a go!

How are you? Did you find it ok?

Great to meet you!

Take care,
love Cathy x

 

[LolaLola]

Hello Nancy,
Just wanted to welcome you. I am afraid I don't have any experience of the treatment.

Posting an Introduction would be good as there are many here who will want to welcome you and do what they can for you.
X Lola

PS Who is Poodie?

 

[poodiesmom]

Hello from Poodiesmom

The IViG treatments went without a hitch. However, I had blood work done 3 days after finishing the 5 days of IViG and my white blood count (specifically the neutrophils) had not risen any. I am really discouraged. My hematologist said she would give me one more week to see if I will have an improvement in the white blood count. If not, she said we will have to talk about severe immunosupression. I have no idea what that means. I have already tried Plaqinel, CellCept, and Rituxan. I am discouraged.

Oh, and poodie is my daughter Judith's nickname. She is my miracle. She was posthumously concieved using the frozen sperm of my late husband. Her due date was one year to the day of his death. She is a senior in high school now. The years have just flown by.

 

[Lily]

Hi poodiesmom,

I'm sorry the IVIG doesn't seem to have worked, do you know if there is often a delayed response? I guess not if he is already talking about other means of sorting this out.

By severe immunosuppression he may mean either Cytoxan or Rituxan probably.

Hugs to you and let us know how you get along.

love
Lily

 

[debatat]

Hi Nancy

I just wanted to say hi. I havent had the treatment you are having, so I cant help you with that, but I hope that you get success with your treatment and start to feel better soon.

Deb

 

[cad]

Hi Nancy,
Just wanted to say hia and welcome. I haven't had this treatment either so can't help with that but just wanted to say good luvk with and I hope it does help.

Take Care

Cassie

 

[LolaLola]

Lovely to know who Poodie is. I am so glad you were able to have her.
x Lola