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KT0930
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« on: August 22, 2007, 06:38:01 AM »

I went to see the Neph yesterday, and he told me about a treatment that the University of Pittsburgh is using with some success on transplant candidates with high PRA's. Apparently, you get a really high dose of a medicine called Campath just before the transplant, another one right after, then are on lower doses of immunosuppressants for the life of the transplant.

I did some research, and Campath was originally approved for use on Leukemia patients, so it makes sense that it would be able to be used in our situation as well. Also, when the doc said "lower doses", I didn't realize exactly what he meant...we're talking three days a week or less of meds, and some studies, it looked like they didn't use steroids at all (woo hoo!!).

I was wondering if anyone else had heard of this, known anyone who had it done, etc?
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I received a 6 out of 6 antigen match transplant on January 9, 2008. Third transplant, first time on The List.
Romona
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« Reply #1 on: August 22, 2007, 01:20:54 PM »

I had my transplant done there. I don't take any steroids. So far so good. I take Prograf for anti rejection. I also take an Asprin daily and antibiotic 3 days a week. Those are the only drugs that I now take for the transplant. The others I take are for blood pressure and prescription strenght suppiilments.
Good Luck to you. Hope you get a transplant soon.  :)

I don't know if I had Campath or not. What happened around the time of the transplant is fuzzy.
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stauffenberg
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« Reply #2 on: August 23, 2007, 08:43:50 AM »

Campath is one of the many monoclonal antibodies which are used as 'induction therapy' in transplant medicine, as a powerful immunosuppressant for a few days at the very beginning of the life of the graft.  It is an extremely dangerous drug to administer, since it is so toxic is can cause fatal shock symptoms unless carefully monitored.  Like all monoclonal antibodies, once you have had it, even for a short period of time, your lifetime risk of infection and deadly lymphomic cancer is greatly increased.  Overall, these drugs should be avoided unless there is some special consideration which makes them necessary, such as a very high pre-existing antibody level in the transplant recipient.
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Romona
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« Reply #3 on: September 14, 2007, 01:48:56 PM »

I went to see the Neph yesterday, and he told me about a treatment that the University of Pittsburgh is using with some success on transplant candidates with high PRA's. Apparently, you get a really high dose of a medicine called Campath just before the transplant, another one right after, then are on lower doses of immunosuppressants for the life of the transplant.

I did some research, and Campath was originally approved for use on Leukemia patients, so it makes sense that it would be able to be used in our situation as well. Also, when the doc said "lower doses", I didn't realize exactly what he meant...we're talking three days a week or less of meds, and some studies, it looked like they didn't use steroids at all (woo hoo!!).

I was wondering if anyone else had heard of this, known anyone who had it done, etc?


I was a transplant clinic today. My doctor mentioned I was a candidate to be weaned off of Progarf. He wants another type of test done to see what my immune function is. I took a peak at my chart and I did have Campath. I may have been aware of it at the time of the transplant but I don't remember much. After he left the room a nurse came in and asked me to sign a paper about my records being used for research purposes and to be notified of studies I maybe a candidate for. He mentioned my Prograf levels have been holding staedy and he may go to every other day dosing.
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kelliOR
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« Reply #4 on: September 14, 2007, 03:34:06 PM »

I posted this on another threat earlier today.  I am very impressed with UPMC.


A friend of mine on another forum has had great success at UPMC due to a more individualized approach in immunosuppression.  Instead of shooting for a common level of immunosupression in patients (standard serum trough levels), UPMC has protocols of treating with monosuppression (prograf), in addition to testing the status of the individual's immune system.  Dr. Shapiro uses Cylex "Immune Cell Function" along with ELISA to monitor his patients.  This enables tapering of Prograf a few months post transplant.  These tests are continually used to determine how active the immune cell response is and treats that response with appropriate DOSES of prograf.

.........Its kind of like testing blood sugar.  When glucose levels are high, insulin is giving accordingly....   Insulin is not given to keep it at a certain level in the body. (Just an analogy)

This  "one size fits all" approach that is commonly used by measuring serum levels seems to ignore the fact that we are all individuals with very different donor organs, and we have very different immune systems.

I worry that some protocol standards over-suppress the immune system, and increase the risk of nephrotoxicity, CMV, BK virus, which eventually could lead down the path to rejection.

I would like to add that my friend did have campath induction prior to transplant, and now is on 5 mg Prograf weekly (2 years out).  His immune cell function is monitored closely.
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Denied PKD for years (Boy, was I good at it!)
Dragged kicking and screaming to dialysis (in center hemo)
Transplant from a friend March 24, 2006 at OHSU
Romona
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« Reply #5 on: September 14, 2007, 03:42:49 PM »

 Dr. Shapiro uses Cylex "Immune Cell Function" along with ELISA to monitor his patients.  This enables tapering of Prograf a few months post transplant.  These tests are continually used to determine how active the immune cell response is and treats that response with appropriate DOSES of prograf.

Dr. Shapiro did not do my surgery, but has been very involved in my treatment. I saw him today. I couldn't have the Cylex test today because it can not be processed on a weekend. I do an ELIZA test every three months.

Is your friend from Pennsylvania?
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kelliOR
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« Reply #6 on: September 14, 2007, 04:52:33 PM »

Hi Ramona !

So glad to hear of others' experiences at UPMC!  As I mentioned in the thread above, yes indeed,  UPMC has used both Cylex (also marketed as ImmunKnow) and ELISA as part of their protocol.  You are so very lucky to be a part of that experience.  I'm constantly impressed with the life work of Dr. Thomas Starzl.  Tell me, have you met him?  My friend (yes, from PA)  is heavily into research (professionally) and has nothing but absolute praise for this man's ingenuity.


Please keep us posted on your post tx treatment !! (perhaps a new thread?)  :)

Hugs,  kelli
PS--  ELISA every 3 months....how often Cylex?
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Shoot for the Moon.....Even if you miss, you'll end up among the Stars ........


Denied PKD for years (Boy, was I good at it!)
Dragged kicking and screaming to dialysis (in center hemo)
Transplant from a friend March 24, 2006 at OHSU
Romona
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« Reply #7 on: September 14, 2007, 06:31:21 PM »

I have never had a cylex done yet. I don't know when I will have it done. I didn't realize I was on such a different protocal as everyone else. I have never met Dr. Starlz, but hope to one day. I have met so many incredible people in Pittsburgh. I am on Team Pittsburgh for the 2008 games. I hope to bowl. I met some truely inspiring people. I talked to a man today, that I had met before but didn't know his story.
At 4 years old he had Wilm's tumor. One of his kidneys had to be removed. When he reached his thirties his remaining kidney and heart began to fail. Pittsburgh was the only place that agreed to do both organs. They did a heart first then did the kidney. He's 5 years post transplant and is doing great.
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Romona
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« Reply #8 on: September 18, 2007, 02:53:09 PM »

I talked to the lab at another UPMC hspoital that will do my cylex. I would be a shorter drive. Instead of close to two hours it would be an hour of highway tavel and no city driving. I'm going to call my coordinator tomorrow and get this set up. Today is a clinic day so I know she is very busy. I'll let everyone know what I find out.
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livecam
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« Reply #9 on: October 27, 2007, 02:24:08 PM »

Ok, semi funny reply here.  I've not heard of Campath but I do know all about Camplex.  It's kind of a dirty word where I work.  Actually it is a system that never really worked right...not kidney related.
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