Starting IVIG with hopes to lower my 97% antibodies

[phyl1215]

I will start this thread here, please move if not in the proper place.

I had my colonoscopy today, Dec. 21 to stay the the transplant list.

Tomorrow at Christ Hospital I will do a Rituxan IV (6 hrs.) to reduce  the antibodies the B cells are making.

Next week I start the IVIG (at home, up to an 8 hr IV each time) one time a month for up to six months.  My daughter has been tested and passed as a donor for me and is a perfect match except for my one high antibody.  They did say I could do this treatment without a donor to get me higher up on the list.  It is not guaranteed to work on everyone and with my PRA so high it would probably take 2 or 3 times to see some results.  This is the same protocol that is  used at Ceders in CA but new at Christ Hospital in Ohio. 

I will update this thread monthly and will try to answer any questions or try to ask my team for you.   Phyl



Edited: Moved to Transplant Section - okarol/admin

[okarol]

I hope all goes well and you get your PRA lower.
Three members that I can think of had similar treatments. Tamara and Jill D got living donor kidneys and Vandie got one from a deceased donor.
  Good luck!

[phyl1215]

Thanks for putting this in the proper spot.  Nice to hear it has worked for others here.  I did great today with the Rituxan IV and should start IVIG on schedule next Tues.

[paris]

Good luck with the infusions.  I did both last year.  My PRA was 100% and unfortunatly, it didn't change mine.  But, miracles still happen and I got a new kidney Sept. 1st.    I hope miracles are happening in your life and your number will go down and you get a transplant.   

[phyl1215]

Yes, I saw you got your kidney and was so happy for you.  Sorry the IVIG didn't work, I'm hoping at least it will lower mine so I can get higher on the list but as you said miriacles do happen. 

[paris]

I do think the infusions were worth trying and would do it again.  Anything that can help us get our bodies be in a better place to accept a new kidney is worth doing.   Personally, I think it made my body be more prepared and ready for the kidney, even thought it didn't lower the #'s.       The IVIG made me run a fever and the Rituxin wore me out, but nothing you can't handle.   Good luck, I am hoping you get fantastic results.  One member here went from 98% to 3%!!!  That's is what I hope happens to you!!   Keep us posted.      

[phyl1215]

Had my first IVIG treatment at home yesterday to try and lower my antibodies.   It took from 9 a.m. to 5:30 p.m. due to a rough start as my PD night dialysis removed a lot of fluid and my blood was "thick" so RN tried twice to get blood then two more times in the other arm to get the IV in and then had to call another nurse to come and do both.....  anyway once it got going after 11 a.m. the first of seven bottles went in so slow (the company forgot to send a pump )it took over 2 hrs for the first bottle to empty then the other went in about 55 mins. each.  Which is what timing they wanted.  So hopefully all the kinks are out and the pump is on it's way to my house for the next month.  I will have blood work done on the 11th and so will my daughter and we will see if anything at all happened this first session.  My antibodies are so high they say I probably won't seen any results until after the 2nd time.  I had the Rituxian last week and it went fine, took about 5 hrs. at the hospital.  I have a bit of a headache (not bad at all) today and seem a bit jittery and I think that is from the steriod they gave me before the infusion, they premedicate with tylenol, benidryl and low dose steriod.  But all in all after being jabbed 5 times I am relieved it is over as I didn't know what to expect and the next one the end of Jan. should be a piece of cake! 

[phyl1215]

Last night I got the chills real bad and then headache got stronger and I am runniing a slight fever.  I feel better this evening, I hope this won't happen every month but if it does I can handle it and if it works it will be worth it.

[MooseMom]

I'm really glad you are updating us; I don't know much about this procedure and am learning a lot from you, so thanks!

[paris]

Phyl1215,  I ran a fever with each IVIG infusion.  It started at night after treatment and lasted a few days.  But, I kept thinking, if that is all that happens, it will be worth it.    My temp would get as high as 103, but I slept through those days.        Anything is worth trying and I am crossing fingers this is just what your body needs.       

[phyl1215]

I am feeling much better today, temp only got to 100.5, it was the headache that was the worst.  I was told I could get flu like symptoms and it could last up to 3 days but thankfully it only lasted about 24 hrs.  Everything seems to be in normal ranges again and I have some energy back.  Looks like it will be a quiet New Years Eve staying home....but that's OK.      HAPPY NEW YEAR EVERYONE

[paris]

Glad the fever is better and you have some energy.   I'm celebrating New Years Eve home alone -- and appreciating all the things the doctors can do to help us.  You are on the top of my list of prayers!  I'm thinking this is going to be a great experience with wonderful  results.   

[phyl1215]

Thank you Paris.....you are on the top of my list too.....It will be a good 2011.

[rsudock]

thanks for the updates!

xo,
R

[-Lady Noir-]

Wow.. this sounds similar to Plasmapheresis. Is it the same thing?

Mike had an incompatible transplant, so he had to have 4 sessions of plasmapheresis, which were AWFUL, but they managed to lower his very high antibody count to an acceptable level just in time to have the transplant!

I wish you the best of luck!! 

[phyl1215]

Thank you Lady Noir.  No it is not the same as plasmapheresis, I had that last fall and didn't help at all and it was hard on me too.  The IVIG puts antibodies from 100's of donors into my system and hopefully tell my body that I have enough antibodies and for me to quit making them.  Sounds simple but that is what they believe this does.  It doesn't work on everyone....maybe I'll be one of the lucky ones this time.

[Riki]

My doctor doesn't want to do anything like this until there's a donor to compare to.. He told me that he doesn't know a whole lot about it but he's going to research it and talk to some of the other doctors to see what they say

[phyl1215]

Well, of course, the first IVIG treatment didn't work and I will have the second one tomorrow, at least they are doing this at my home.  Specific numbers are not known yet so we don't kown if it worked at all or percentages if it did, I should know that this week.  As you know everything seems to be a waiting game.   So here's to hoping, wishing and praying this next treatment works.   My hospital just started doing this program and I am like the 3rd one doing it Riki, by all means have your Dr. find out about it, it does work and many.

[rsudock]

sending positive vibes  all goes well!!

xo,
R

My doctor doesn't want to do anything like this until there's a donor to compare to.. He told me that he doesn't know a whole lot about it but he's going to research it and talk to some of the other doctors to see what they say

riki we must be living in a parallel universe my doc told me to "stay level headed" while he researched it...still haven't heard.

[phyl1215]

Had the second treatment this past Tuesday and it took 14 HOURS!!!!  We are not sure why it was soooooo slow but they didn't send a pump and maybe it was a small vein....at least I don't feel bad this this time just a tiny bit of a headache.  I was told that I will need the thrid IVIG treatment as not much change in my numbers the first time (this was expected).  So hopefully I will stay feeling well today and find out the results in 3 wks or so. 

[okarol]

I hope you get good results!

[phyl1215]

Everything has changed now.  The transplant team has stopped my high dose IVIG treatments because after 2 X's hardly any drop in antibodies.  They want to do a more aggressive approach doing low dose of IVIG one day, plasmapheres (spelling? blood cleaning) the next for up to 2 wks!!!  I have to have a heart catheritization this coming Tues. and if that is OK we will meet with my transplant team to go over the pros and cons of doing this treatment as it is a semi commitment for me to have a transplant which would have to be done within 5 days if the antibodies drop. 

It does scare me to have the heart procedure because of the dye they use, which is what caused part of my kidney problem in the first place but they are giving me something to help protect the kidneys and Neph is asking them not use use as much dye.  I still have about 12% function while doing PD and want to keep it for as long as I can until a transplant. 

So I am a bit overwhelmed now and will just take this one step at a time....if I get approved Tues. by the heart Dr. then on to the big meeting March 1 to decide if I want to do this and when this would all take place. 

Wish me luck!

[paris]

I do wish you much luck.  I'll be keeping you in my prayers as you go through the catheritization and through the treatments.  We're all hoping this ends in a successful transplant   

[rsudock]

here's wishing you luck!! keep on fighting   

xo,
R

[phyl1215]

All transplant treatments have been put on hold for 6 months now.  I had the cardiac cath on Tues. and they found 3 main arteries blocked, one was 99%, next 90% and 75%.  What a shock, even my Dr. didin't expect to find anything....nothing showed uip on my stress test and I didn't have any symptoms, now that is scary.  Dr. put 3 stents in on Thurs. so no heart bypass, thank goodness.  I got out of the hospital Friday afternoon and very happy to be home.  They protected my kidneys as best they could as I still have about 12 % function left and on Friday the numbers stayed the same.  So I have a lot to be grateful for but I am a bit disappointed that we didn't get the go ahead to start the treatment program to lower antibodies and go to transplant.  At least I don't have to even think about that for 6 mths. now and hopefully was saved from a major heart attack.