Comment

Comment by Joe on April 10, 2013 at 3:10pm

Any new advice for Neoral caused kidney damage?

Comment by Alan Brezin on April 8, 2013 at 10:46am

I am reading a lot of complaints about muscle pain. If you are also taking a statin drug to lower cholesterol make sure this Coenzyme Q10 blocker is not the culprit! I currently take 50 mg Gengraf twice a day with no problems. I have taken Cyclo, Neoral, and another generic for Neoral over the years. Whichever the lower dose seems to be the main factor in reducing side effects. I also take Myfortic twice a day and no other anti-rejection meds.

Comment by Chuck on March 17, 2013 at 2:37pm

I have been on Neoral 125mg for 5 plus years. I also take Myfortic. I had a liver transplant in 2007. This past year I have had problems with diarrhea. My doctor put me on Welchol and that has pretty much stopped the diarrhea.  

Has anyone in this group had any of these problems and if so what was done? Did your doctor change your meds from Neoral to some other anti-rejection meds.

Thanks for any responses. 

Comment by Joe on March 12, 2013 at 12:53pm

My pain is liver pain when I try to reduce the Neoral but I will check out the fish oil info, thanks

Comment by India Rose on March 12, 2013 at 11:42am

Joe- I suggest you start taking fish oil for the kidney disease and pain.  See our fish oil discussions.  Also, I am surprised you are still taking immuran.  I pushed my Drs. to switch me to cellcept and it extended the life of my kidney transplant.  It is a much better drug.  My Drs. told me it would not make and difference but agreed to switch me and it slowed down the chrionic rejection.

Comment by Joe on March 12, 2013 at 11:29am

I had 2 liver transplants 24 yrs ago but I'm still on 100mg Neoral bid & 50mg Imuran. I have kidney disease now, from the Neoral, so drs are advising me to reduce & d/c it but this is now the 4th time I've tried to reduce it to 75mg and I always have pain! Talk about "...between a rock and a hard place" Any advise? Thanks, Joe.

Comment by Cktsmom on March 12, 2013 at 10:40am

My daughter also started on liquid cyclosporine in 1986 and is now taking 125 twice a day of Neoral......no major issues, although she seems stuffed up a lot and has some back problems (probably from years of skating)...healthy and 6 months pregnant with her second child....ps...there is a Quarter Century Club on FB and Yahoo for those of you transplanted for 25 yrs or more...enjoy the day all

Comment by Laurel on January 12, 2013 at 10:13pm

I too have severe muscle cramps. I drink a lot of water and exercise.My potassium and magnesium are fine. I take a supplement of D and magnesium per doctor's orders.I even went to see a neurologist. I guess I have to live with it. I liked prograf way better.I will bring it up to my post transplant team again.I got my first migrain (just wavy lines, no pain) in a decade. They are very rare to me and not in my family. Maybe you are on to something.

Comment by Lauren on January 12, 2013 at 9:30pm

I had my liver transplant over  25 years ago. I started on cyclosporine in liquid form and graduated to Neoral pills ieel n my teens. I now take 1 25 mg pill daily . Over the years have expierenced chronic sinus problems and digestive issues. In my late 20's started getting muscle and joint pan and migranes.  Dr's believed I could have had fibromyalgia when I developed the muscle and joint pain, but after my extensive research on cyclosporine I feel that this is just part of the package . As long as I keep up with excersising  the muscle and joint pain disapears. As far as the migranes , i  take migrane meds when needed. Other than those issues I am very lucky to be as healthy as I am today and thank god for the parents that decieded to donate their little girls organs after a horrible car accident, without them I would not be able to be here now.  Hope all of you stay as positive and healthy this new year!!!

 

Comment by becky on January 11, 2013 at 6:15pm

I had a pancreas only transplant 2008. At first I took prograf, but after a severe reaction to it and over 3 weeks in hosp sent home on rapamune. I felt great! 3 mos later I developed rejection problems. The Surgeons had to go back in to repair some damage. After a month in hosp was put on cyclosporin gengraf. since then have had neurological tremors, ticks, wierd inside spasms, muscle and joint pain, high bp, cholesterol, chronic kidney disease excessive body hair all side effects from the drug. Working with tx drs to try getting off of it. I'm currently taking  100mg am and 75 mg pm. My tx pancreas is functioning well thank God. My body isn't functioning well and my prayer is to find another med without compromising my body any more. Yes, I'm so grateful to have a second chance atlife without diabetes. No regrets ever!

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