Amanda got the call.. The day before my wedding

[George Jung]

Could the difference in immunosuppressant drugs between two people with perfect match organs be due to the fact that one has lupus and the other not.   I thought a perfect match meant no life long anti-rejection meds.  Do the immunosuppresive meds keep lupus at bay? 

Sorry if this is off topic but someone I know was recently diagnosed with lupus and we were talking medication.

[poohkari]

OH MY GOD! What a dramatic story to come upon. I was wondering what happened to Amanda, but since I don't read this transplant forum (I dont want to get too amped up about it yet!) I had no idea.

Oh, Amanda! If I had read this earlier, i'd have robbed a bank, packed up the NxStage and Wade and I would be there to raise some hell! It sounds like you did a good job though!

You are in my thoughts and prayers - and I have the gut feeling you're going to be alright, you're a fighter! 

[angela515]

Could the difference in immunosuppressant drugs between two people with perfect match organs be due to the fact that one has lupus and the other not.   I thought a perfect match meant no life long anti-rejection meds.  Do the immunosuppresive meds keep lupus at bay? 

Sorry if this is off topic but someone I know was recently diagnosed with lupus and we were talking medication.

From what I understand about perfect match transplants is they still need the anti-rejection meds, at least for the first year. I maybe wrong on that... but the only people I know that are completely taken off anti-rejection meds are people who get transplants from identical twins (there never even put on anti-rejection meds)... and I believe perfect match transplants that have been going or over 10+ years... However  I am sure each doctor does there own thing and so forth, so it could be different everywhere... Karol.. where's the info on this?

As for the anti-rejection meds controlling Lupus, no.. they do not. However, Prednisone plays a major role in helping put Lupus in remission and keeping it there... so in some transplant patients the doctor might want to keep or start Prednisone in a transpant patient with Lupus to keep their Lupus in remission.

In my situation, my Lupus has been in remission since 1999, and I was on Prednisone for the whole 5 years of my first transplant... and I was taken off of it once I went back on dialysis in 2004... since I wasn't on it for the last 3 years, and my PRA was 0%, my surgeon wanted me to stay off of it for this perfect match organ, and so far so good.

Great question George... I am interested in finding out this info as well, because if in the future I could come off of Prograf and Rapamune and still have a great working kidney, I would think t would be a very kewl thing...

[Falkenbach]

Gosh, I'm interested in this subject too. Cyclosporin is ruining my ankle and knee joints and I can't get my life back until this problem goes away! Neph has said that he doesn't want to reduce or remove my cyclosporin until 6 months have passed, so I'm stuck with it for the time being at least. I hope the damage isn't permanent.

Dad and I were apparently as close to a perfect match as you can get, without actually being perfect. But my understanding is that I am expected to be on the anti-rejection drugs for life.

Tell us all about it Amanda 

[Amanda From OZ]

Thanks again for the support everyone. 

OK well i just has an appointment with all the doctors, and this is the new plain.

I will be off Pred. in 3 months, then off it. But i will still be on two other anti-rejection drugs but very low doses for the first year, then after that i will only be on one.

Cycobully you said cyclosporin is ruining your ankles and joints, can't they change you to tacurmus (spelling). Thats what they usually change ppl to when they are having problems with cyclo.

[lola]

  xoxoxo







EDITED: Fixed smiley error-kitkatz,moderator

[angela515]

Ah yes, being weened and taken off Prednisone... I get what you were saying now. 

So glad you doing better now hun! 

[Wattle]

Thanks again for the support everyone. 

OK well i just has an appointment with all the doctors, and this is the new plain.

I will be off Pred. in 3 months, then off it. But i will still be on two other anti-rejection drugs but very low doses for the first year, then after that i will only be on one.

Cycobully you said cyclosporin is ruining your ankles and joints, can't they change you to tacurmus (spelling). Thats what they usually change ppl to when they are having problems with cyclo.

 Hi Amanda,   

What med protocol are you on? What meds do you take for the transplant?   

[MyssAnne]

Amanda, I am so glad it's going much better for you, finally!

[Romona]

Amanda you are remarkable! 

[Falkenbach]

Cycobully you said cyclosporin is ruining your ankles and joints, can't they change you to tacurmus (spelling). Thats what they usually change ppl to when they are having problems with cyclo.

Hi Amanda

My neph doesn't want me to change or reduce the cyclo until I've been on it for 6 months, as he feels it would increase the risk of rejection. At the moment, I'm at the 3.5-month mark. I just had an MRI on my ankles (and knees? not sure) yesterday to check the situation out further, so we'll see what he says once he has those results.

[Amanda From OZ]

Ok the med protocol i am on is -

prednisone - 15 mg (off it within 3 months)

cellcept- 750 mg

prograf - 4mg ( stopping at 3 months)

My results for today have improved a lot more also. My Creat. is now 90. 





 

[RichardMEL]

wow 90! that's amazing.... mine's like over 1000 lol!

you go girl!!!

[Wattle]

My results for today have improved a lot more also. My Creat. is now 90. 
 

    Woohoooo Amanda! GO SLEEPY GO   

[okarol]

My results for today have improved a lot more also. My Creat. is now 90. 
 

    Woohoooo Amanda! GO SLEEPY GO   

Yahoo!  Now maybe you'll change your kidney's name to Spunky! 

[RichardMEL]

I'd vote for Spunky.... I mean Amanda is spunky so that totally fits!

shhh don't show her boyfriend that ... or I could be needing more than a kidney!!!!

[MyssAnne]

LOL!!! Richard, Richard, Richard.  What ARE we gonna do with you. one of these days.....
Actually, though. Spunky is a good name!!!  I like it, and Amanda sure is, isn't she?  One heck of a strong woman.

[paddbear0000]

My results for today have improved a lot more also. My Creat. is now 90. 

I'm confused! I know down there, your creat value is different than here in the US, but what is the normal range? I see yours is down to 90, but RichardMEL's is over 1000, so I'm not sure what to base them on. Oh, and BTW,  on the kidney!!!

[Falkenbach]

My Creat. is now 90. 

That's incredible! And fantastic! I've never done better than 100, and I did a dance even then.

Now maybe you'll change your kidney's name to Spunky!

Why not? My mum gave my kidney a name - Sidney.  Sidney the Kidney.

[Falkenbach]

I'm confused! I know down there, your creat value is different than here in the US, but what is the normal range? I see yours is down to 90, but RichardMEL's is over 1000, so I'm not sure what to base them on.

The normal range is between 60 - 120.

I *THINK* (and I could have this wrong) that what we call a creatinine reading of 120 is what you would call 1.2  - can anyone confirm that I've got this correct?

So Amanda's is doing excellently  - Richard's is extraordinarily high, I didn't even know it could get that high 

[Joe Paul]

Ok the med protocol i am on is -

prednisone - 15 mg (off it within 3 months)

cellcept- 750 mg

prograf - 4mg ( stopping at 3 months)

My results for today have improved a lot more also. My Creat. is now 90. 





 

Thats great Amanda, glad your kidney is alive and well!!!

[glitter]

I'm glad everything is going fine! 

[Romona]

Wonderful news. So happy for you!

[angela515]

Ok the med protocol i am on is -

prednisone - 15 mg (off it within 3 months)

cellcept- 750 mg

prograf - 4mg ( stopping at 3 months)

My results for today have improved a lot more also. My Creat. is now 90. 





 

Awesome!! 

[hala]

I *THINK* (and I could have this wrong) that what we call a creatinine reading of 120 is what you would call 1.2  - can anyone confirm that I've got this correct?

120 is not 1.2 
here's a clinical unit conversion :   http://dwjay.tripod.com/conversion.html
to convert from the large numbers (i.e. 120, 130, ..1200) to the small ones, use (µmol/L) to (mg/dL)
so, 120 would be 1.4