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VTDave
Member
Username: Duen

Post Number: 5
Registered: 10-2009
Posted on Monday, November 30, 2009 - 11:34 pm:   Edit Post Delete Post Print Post

Hi Buddies,

Over the last couple weeks I have had my prograf reduced from 3 mg to 1 mg twice a day Unfortunately I've seen very little improvement in the burning in my face and the nervous twitching that leaves me aching too much of the day. I have kept working ever since this nervous system problem started 6 months ago.

I don't have any problem with my back so not up for alot of testing when prograf is known for these side effect in enough of the population that take it. It has been a good drug for me but I think I need to try Rapamune as it may be I can't tolerate the calcineuron inhibiting drugs for now.

What threw me for a curve is they say I need to do a 24 hour urine test as I supposedly can't change med's if I'm dumping protein into my urine.

I'm l wondering if anyone else has changed from Prograf to Rapamune for nervous system side effect and how long till things improved? I am beginning to fear that some damage has been done to my body and nothing may make a difference as dropping my dosage hasn't helped me.
panchitaruiz
Member
Username: Panchitaruiz

Post Number: 49
Registered: 01-2009
Posted on Sunday, December 06, 2009 - 08:21 am:   Edit Post Delete Post Print Post

I haven't changed, so i don't have any advice, but i just wanted to wish you the best of luck and i hope it turns out well.
Francesca

fulminant hepatitis
Liver transplant '07
UCLA
garben
Member
Username: Garben

Post Number: 7
Registered: 10-2007
Posted on Sunday, December 06, 2009 - 11:00 am:   Edit Post Delete Post Print Post

Hi VTDave,

The only side effect I have with my prograf is the twitching or trembling. This only happens to me when my tacrolimus levels are too high. I am not sure if you get copies of you lab work, but you may want to start looking at those levels.

When I first received my transplant I was on a high dose of Prograf and I was shaking all the time. They finally drop my dosage to .5mg every 12 hours. I have been taking this dose now for about a year and a half. I still see fluctuations in my tacrolimus level on my labs.

It seems to take months for me to get this to the right level. I hope this helps in some way.

Good Luck and God Bless!

garben
Garben

Liver Transplant, 2/28/07
Memorial Hermann, Houston, TX.
VTDave
Member
Username: Duen

Post Number: 6
Registered: 10-2009
Posted on Tuesday, December 08, 2009 - 09:04 pm:   Edit Post Delete Post Print Post

Thanks for the post Garben. I guess it's a huge deal changing to Rapamune...so they will have .5 mg pills shipped to me but I will have to go on weekly labs...

does anyone know how long they would require weekly labs drawn?

Still awful sweating in face at time but I seem to have longer good periods and hope the .5 will bring more good feeling.

sure wish there was a test to see if my body appears to have accepted my donated liver.

The say .5 mg is the lowest therapeutic dosage...don't suppose it would be too good to get tiny does by injection but I just want to be the best me.

Dave
papillonbleu
Forum Leader
Username: Papillonbleu

Post Number: 1537
Registered: 10-2007
Posted on Wednesday, December 09, 2009 - 09:30 am:   Edit Post Delete Post Print Post

Dear Dave,
I hope that your transition to Rapamune will go well for you and that the symptoms that you are experiencing due to the Prograf will end. I am on Prograf 2mg twice daily and will still sometimes get a little bit of tremor in my hands but nothing too bothersome. It was much worse right after my transplant but gradually got better over time. I am sorry that you have had more trouble with the Prograf. I assume that they would want to do weekly labs until they see that you are stabilized for awhile at a good level on the Rapamune, and then taper off the number of times for labs if you continue to do well. I will keep you in my thoughts and prayers. Best of wishes.
Bobbiejo
Forum Leader-Multivisceral
dx: GERD 1995, gastroparesis 2002, pseudo-obstruction of the bowel 2004
multivisceral transplant, 6 organs, 10/06/05
University of Miami/Jackson Memorial Hospital

VTDave
Member
Username: Duen

Post Number: 7
Registered: 10-2009
Posted on Wednesday, December 09, 2009 - 10:04 am:   Edit Post Delete Post Print Post

Actually I'm staying put on Prograf to see if I improve on the .5 mg twice a day dosage. I am not looking forward to weekly labs so hope that just till they see a steady trend.
Joe Berry
Member
Username: Joe910

Post Number: 89
Registered: 08-2008
Posted on Wednesday, December 09, 2009 - 11:33 am:   Edit Post Delete Post Print Post

When my meds have been changed, I do weekly labs for four weeks, then resume monthly.
Good luck!
Joe Berry, Peoria, IL USA
Diagnosed with PSC and UC in 1990
Liver Transplant 10-17-2007
Northwestern Memorial, Chicago, IL
Wilson
Member
Username: Wilson

Post Number: 2
Registered: 07-2007
Posted on Monday, December 14, 2009 - 07:33 pm:   Edit Post Delete Post Print Post

I don't know if this helps, but I was initially put on prograf after my transplant, however, my tremors were so severe they switched me to Cyclosporine right away. It took over a month before the tremors finally stopped. The reason that it took so long could be because my tremors were so severe. My hands shook so bad I could not even feed myself, and it took a couple of weeks before I could sign my name again. Since then the tremors have totally stopped. Hopefully all your symptoms will also disappear. BTW I had labs drawn monthly for two years post transplant (liver), and they have been every other month since then.
wilson
Meagan
Forum Leader
Username: Newheart14

Post Number: 539
Registered: 01-2009
Posted on Monday, December 14, 2009 - 07:46 pm:   Edit Post Delete Post Print Post

Duen, welcome to Transplant Buddies.

I thought it was the prednisone that give us the tremors. I shook pretty good for the first year and it was difficult eating, but it eventually stopped. I have not experienced any burning in the face.

I am having problems with my hip, knee, thigh at the moment and I am wondering if this is due to the drugs. I will be finding out soon and will let everyone know. Like you, I have been getting some twitching in the leg as well. My prednisone is down to 2.5 mg/daily and my prograf is going to be reduced to 2.5 mg twice daily.

I do hope you will be feeling better soon.

Meagan
First Combined Heart-Liver Transplant
Performed at Toronto General Hospital, Toronto, Canada
February 14, 2008
http://www.facebook.com/people/Meagan-Casimir/1149907559
http://www.tgwhf.ca/sites/testyourlimits/
Yesterday is history, tomorrow is a mystery, today is a gift, that is why it is called the present.
Mohan
Member
Username: Mraghavan

Post Number: 10
Registered: 12-2009
Posted on Monday, December 14, 2009 - 08:02 pm:   Edit Post Delete Post Print Post

I started on 2.5 mg of Prograf twice daily, was brought down to 1.5 and was raised back to 2.0 and have been kept at this level for the past 3 months.

I am having migraine headaches, tingling in my feet, and twitching in my legs. My doctors are saying that Rapamune will have fewer side effects. But since I am only months out of my transplant, they want to continue to keep me on Prograf.

Regarding the visits, I was called in to clinic every other day for two months. I am now at once a month, and I am told that I will be that way for awhile.

All I can add is that I can completely relate to what everyone else is going through.
Mohan
Liver Transplant 04/18/2009
University of Colorado Hospital
VTDave
Member
Username: Duen

Post Number: 8
Registered: 10-2009
Posted on Tuesday, December 15, 2009 - 10:23 am:   Edit Post Delete Post Print Post

Hi All and hope you are able to enjoy the holiday season upon us.

My Magnesium level is back in the normal range so glad the cheaper discount store Magnesium Oxide worked out for me...but it did cause more bm's...I will back off to 750 mg and see how my labs are next week.

I am hoping my .5 mg Prograf arrives in the mail today...I have periods of feeling ok for part or most of some days. I hope the new lower dose takes me to a cruising altitude above the turbulence.

It has helped me greatly to read your posts and the sharing of information associated with this website. All my symptoms are recognized by the drug maker even if my doctors and nurses like to play coy at times or say things like "have you been to your primary care physician? or have you been to a neurologist?....Sheesh! Dave
Jeffery
Member
Username: Jeffery

Post Number: 29
Registered: 06-2009
Posted on Wednesday, December 23, 2009 - 08:40 am:   Edit Post Delete Post Print Post

Hi Duen,

I started out on Prograf and pred. but the tremors were to much to handle. Mayo told me that men have more problems with Prograf that woman. I switched to Neoral but at my first return visit 6 months post TX they found that my Kidney function dropped to 50%, so then they started me on Rapamune along with the Neoral. I was on both until my 1 year annual. I have been on Rapamune (2mg/day) for seven years now, and my Kidney function has improved some.

As per labs, I had them every week for the first year, then every two weeks for the second year, then monthly for the 3rd and 4th year. Now I have labs quarterly.

About Rapamune, some people have serious problems with maintaining the trough level. They can jump up to toxic levels with no change in doses. So please keep informed of your levels. Also the side effects I have from Rapamune is joint pain and acne, but am dealing with it.

Blessings, and Happy New Year

Jeff

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