IVIG- Treatment for HIGH ANTIBODIES so you can GET A TRANSPLANT!!!!!

[pamster42000]

Hi Soraya,

I came upon your site Seven Lucky Stars back in Sept. 2007 looking for help for my daughter, Sarah who had a living donor but he couldn't donate because her antibodies were to high.  I sent you an email  asking you about the IVIG treatment. I remember receiving a reply Oct.2 2007 either from you or your Mom, just a day after my daughter passed away. I just sat there and cried because there was hope for Sarah way back in 2004 because Medicare would pay for the treatment at Cedar's. We were declined payment by Medicare at the S.D. transplant center in 2006 possibly because they were trying to start their own protocol for the treatment. It still upsets me that no one ever told us about Cedar's.

I am very glad though that you and your Mom are dedicated in spreading the word. You are very special people!

Pam

[phyl1215]

Hi, I'm new here and just started the IVIG treatments in an experimental trial here in Cincinnati, OH.  I do my second treatment on Thurs. and then 2 more next week, this is phase one, if it doesn't lower me enough to match my donor (my daughter) then I go into the second phase of treatment wihich is another month but more intensive treatments.  The research team is very excited and hopeful that this IVIG will be approved by Medicare and help thousands of kidney patients with high antibodies.  I am not on dialysis yet, very close and hopefully this IVIG will let me skip dialysis and go straight to transplant....I am 98% so this is worth the try for me.  Since this is a trial it doesn't cost me anything and they are only testing 50 people and I am #19.  I am very blessed.  I will update but won't know if it is working until end of Aug.

[phyl1215]

finished the first phase of the IVIG treatments, had several side effects but nothing I couldn't deal with so that is good.  Now I do a blood work up Aug. 31 and they will see if the treatments have worked if not on to phase 2.  They think this has workedin the first phase for one man in the trial in a similiar situation to me with a donor and one high antibody so I am crossing my fingers...as the rest have had to go into the more intense phase 2. 

[paris]

Hoping you have good results.   

[phyl1215]

Finished the first phase of treatment and it lowered my antibodies by 30%, still not low enough as I was at 98% but it is working.  I start 2nd phase of more intense treatments on Monday every Mon. & Thurs. for 4 wks.  It is low doses of IV chemo, one chemo infusion for 4-6 hrs. and 3 blood cleanings and hopefully in mid Oct. I will be down low enough to receive my daughters kidney.

[phyl1215]

Finished another phase of IVIG....had last Velcade treatment Thurs....thank goodness, sure didn't enjoy all the side effects.  Now I have 3 Plasmapheresis (which I'm scared about as I don't do dialysis yet) and I will know the results end of Oct.  All I know is that my 98% antibodies are down 30% after the first phase so they are very hopeful mine will drop enough and they have had one successful person that will get her transplant and 2 people that can't get from their donor but have moved to the top of the deceased transplant list so finally some success and I plan on being the 2nd to get their donor kidney!   

[paris]

It is always good to hear about good results.  I know you must be very excited.  The side effects can be yucky, but it will all be worth it.   

[mk]

phyl1215, don't be scared of the plasmapheresis. I had 5 of them in two weeks before my transplant when undergoing the protocol to reduce my antibodies and 4 after my successful transplant during my only antibody rejection episode. It doesn't take as long as IVIG. I was uncomfortable from my reaction of the reduced calicum  - it made me feel very weak and off but I was on dialysis and not very strong then. The first couple were OK but the last two were worse. During the second series I had no reaction at all other than needing a nap after since I felt tired. Your hospital should give you something to help the calicum problem if it occurs with you - here at home the hospital  gave me tums to replace the calicum which didn't work as well as the second series in toronto hospital where they inject calcium into the solution. This may not make sense but it will when you go through it. Probably the hardest thing was the insertion of the lines that are used to do the plasmaph. I should have asked for some atavin to ease me through the first time. If you don't have it in yet, ask if it can be inserted under ultrasound guidance - it was better that time.

It was all worth it since it worked. My donor (my husband, my hero) and I became a perfect match with the IVIG and plasmaph. - TGH doesn't give the velcade. (You also have to have a donor even though we were very far apart with my antibodies) I did have the one antibody rejection episode 10 days after the transplant which meant some heavy steroids, more IVIG and more plasmaph. over 8 days but it settled everything and I am very well 7 months later and they have reduced my medications to reasonable levels - the side effects are there but SO much easier to cope with than dialysis and I feel way better than I did as I was in Late Stage RF.

I hope this helps and I hope that more of you out there get to have a transplant through this amazing process. I hope I haven't given too much information. I'm new at this. But I read this thread a lot as I was going through it. You helped so much.
cheers. Mary

[Wenchie58]

I had plasmapheresis twelve sessions post transplant due to donor specific antibodies.  Felt a bit weak after each session, but other than that, no big deal.  If I got dizzy during the session they fed me tums to bring calcium levels up.  It's SO worth it to get and/or keep a donated kidney!
Good luck!

[tamara]

Good ol plasmapharesis, had 30 days of it back in 99 due to TTP, the cause of my kidney failure and saved my life. Having the "couple" for the superkidney of Allan's was a breeze.....

[phyl1215]

Thanks for the info and support everyone.  I have now had my second plasmapharesis and the last one this coming Monday.  I had to have the cath put into my neck with 2 tubes hanging for the machine to hook up too.  The session went fine, 2 hrs. and I only had a blood pressure drop the first time and they corrected it quickly.  What an amazing machine and it really shocked me that I didn't feel anything!  I will be glad when it is finished though.  The project has done only 20 people so far and had 2 that will get transplants and two that got to the top of the transplant list and they are very hopeful I will get my kidney.  So there is good success so far and they told me if this trial works it will change the way kidney patients will be treated....very exciting to be part of this.  I do feel a bit more tired after this second round but otherwise doing OK.
Thanks again!

[tamara]

 

[phyl1215]

   Finished with the treatments!!!!  Have a couple more blood tests and will know the results around Oct. 28.  Glad it's all over.

[paris]

I am glad they are over for you also.  Let us know as soon as you get the results.  Sounds like it is all working for you and that is great.   

[Sunny]

I hope your results are good and I've got my fingers crossed for you.

[phyl1215]

They moved my last blood work up to Oct. 20 so I will know a little earlier.  I have had a bad week with side effects from the Velcade (chemo) seems the plasamaphaersis might have been the cause of this flair up.  My legs ache and feet feel numb/tingling and like I always have a pair of socks on.  I can't hardly sleep over 1 hr. at a time and finally started taking some Tylonel which helps a little and today got some Hydrocodone from the kidney Dr. so I can get some sleep.  My hands were doing the same thing but are pretty much normal right now and the feet do seem to have more feeling so I think this is very slowly going away, I hope so.  There is one other person in the study having the same problem so at least I'm not by myself....just wish it would stop, I hate having to rely on these pain pills but hopefully tonight I can get some sleep.   

[paris]

I hope the 20th brings great results for you      I'll be waiting with fingers crossed   

[phyl1215]

Well, I'm still waiting on the 25th.  Hopefully first of this week I'll hear....nervewracking!!!!

[phyl1215]

The treatments did not lower my antibodies enough to receive one of my daughters kidneys.  They want me in a new trial starting in Dec. to try and lower them more but not chemo and less side effects.  So they are not giving up and neither will I.  Just wanting this tingling and numbness from the last treatments to finally go away, it is really hard to walk, type, sleep and in general have a "normal" lifestyle.  I will keep you all up to date as things progress, thanks for all the prayers and support.  The treatments did lower my antibodies some  so I am in a better position on the transplant list now, so some good did come of it all.  Also found out the name of the study I was in was B-Cell Trargeted Desensitization Strategy not IVIG which is on one of the papers they gave me.....  The IVIG is what I will start in Dec. very confusing.

[paris]

Any change in the PRA is good news.   I did both IVIG and Rituxin(kills the b-cells).  Unfortunatley, they didn't make a difference in mine.  I will keep praying the next round of treatments make more of a difference for you.  Keep looking forward!   

[Sunny]

It takes a brave person to go through with any of these PRA reducing treatments. Hats off to those of you who have tried regardless of the outcome. I do hope the next round of treatments will be successful. Good luck.