Neoral-Cyclosporine

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Comment by Kristy on March 29, 2012 at 9:46pm

Can anyone explain how the choice is made between Cyclosporine and Prograff?  I am almost 5 months post oancreas ony transplant ad HATE the Prograff,.  In addition to the hand tremors, mihraine-like headaches, and MAJOR hairloss, it has made my kigney function drop (creatinie) drop what I consider drastically despite the docs playing it off as no big deal. ( ihave only 1 kidney and the creatinie was stabla t 1.4 for YEARS - in 5 months it is up to 2.4! Is the Cyclosporine kinder to the kidney?  How is one drug chosen over the other?  Are there benefits of one more than the other?  I am trying to prepare myself for next moths visit ti the clinic when I go CRAZY on them about the Prograff.  Funny, how they fail to tell you about ALL of the side effects, and only mention very few pre-transplant.  I almost think I would not have signed up for this, had I known whatto expect.  I don;t mean to sound ungreatful, but this transplant has so many medication side effects, I was almost better of with my Majorly uncontrolled diabletes.

Comment by Rebecca on March 26, 2012 at 4:34pm

Hello Jay! Yes, I still take the original Sandimunne Cyclosporine! I am going on 27 years post liver tx (this May). Liquid gold is what we used to call it. Very expensive. I take the capsule now. I am medically retired from the Army, so lucky for me, my meds are free.

Comment by Jay on March 26, 2012 at 7:59am

Would like to know who else is taking the original (NON-Modified) Sandimunne cyclosporin? It only came in liquid form when I started taking it in 1985. Found a generic form a couple years ago, but the FDA banned it's import from Canada.

Comment by oni on March 26, 2012 at 5:37am

Im 6 yrs post kidney trAnspalnt and my doc lowered my neoral to 25 mg twice a day, cellcept 2 x a day and prednisone 5 mg.. My crea looks good at .95 .

Comment by Doug on February 14, 2012 at 5:10pm

Rita,

At the beginning of the year  my insuranced swithched from using Medco to CVS Caremark.  My first experience with CVS Caremark was trouble filling my cyclosporine perscription.  This was the first time it was classified as a specialty drug for the 18years I have been on it and the first time I was told it was out of stock.  I contribulted to problems with CVS Caremark, but with your comment on shortage I may have been wrong.

Doug

Comment by Kathryn Flynn on February 13, 2012 at 1:26pm

You bet Lilybet-

I'm not knocking it- and it does work!!! Some of the hair stories, while true, was not so funny when I went back to the beach the first time or heard mommy your Hairy. Sorry about the typos.  Having some problems with a non-transplant pill.

Comment by Lilybet on February 13, 2012 at 12:53pm

I am not on the generic brand of Neoral, but would also like to hear some more about it. I have taken Neoral now for 12 and a half years since my kidney transplant. That half a year is important to all of us who have been given the gift of life in the form of a transplant!!!. My biggest side effect was the excessive hair growth (i.e. feeling like a werewolf). But as my dosage has lowered over the years that has subsided which I am very thankful for. After reading all these posts it looks like we have all been blessed with very minor side effects compared to some other anti-rejection meds.

Comment by Hostess Rise' on February 13, 2012 at 12:33pm

Check out some responses on FB in regards to Neoral.

http://facebook.com/transplantbuddies

Comment by Kathryn Flynn on February 12, 2012 at 4:30pm

From Kathryn Flynn to Hostess Rise'
Sent 16 hours ago

hidradynitis Water in ear??? Would love to talk about that.

 

I have been on neoral for 15 years. well..almost 16 now) and these are the sidefeffects I have exoerienced and my solutions. The docs have had me on anywhere from 100 2xday to now 175x day all dependent on the other little pills I take. I have heard enough problems with gengraf I am not going there until I am convinced by a doctor it is perfected.

 

Puffy cheeks (alas not the other cheeks)- will go down when/if you can lower prednisione (I am on 5 mg Advair inhaler)

Excessive hair growth and I do meaan excessive. Scissors and razors aand tweezers.

WARNING: If you get excessivel, excessive are hair growth at the beginning and see your "hair flying out the window" do not go home and try to cut it off with scissors. a Razor works better. Wrist to armpit.

Overgrown gums. Goood oral hygeine helps.

Migraines- no narcotics until tried other prescription solutions that have beeen developed. Ask the doc.

High blood pressure- pillls

 

Comment by Lauren on February 11, 2012 at 2:40am

I had my liver transplant in 1985  which I was 5 at the time and have been on cyclosporine ever since. In my mid teens they switched me to neoral and I had no new side affects on it since then. I am on just 25 mg  daily and then just take vitamins. I was always told however that I could never take the generic of neoral, it always has to be the brand because of the chemical compound in the generic is a little different.  Have done wonderful on this medication, just wish physicians that you have to see for other things that arise along the way knew more about the drug than just the name of it.

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