post transplant medications

[susan parry]

i am curious about what meds all of you are on post transplant.  i am on cellcept, rapamune, prograff, bactrum.  i am NOT on prednisone.  (not sure why?) i am on valcyte (take my last one of those on february 6 and will never in my life be so happy to get off any medication)  they scared the hell out of me in the hospital when they said it was a carcinogin and that i was the only one allowed to touch it as it could cause cancer. 

i am 5 months post transplant

thanks

[Wenchie58]

Prograf, Myfortic, Prednisone, Bactrim, Folic Acid, Aspirin, Aranesp, Lopressor, Norvasc, Zocor, Nexium and Glipizide

And now 15 months post transplant back on Valcyte due to a bout with CMV

[okarol]

Prograf, Myfortic, Prednisone, Bactrim, Folic Acid, Aspirin, Aranesp, Lopressor, Norvasc, Zocor, Nexium and Glipizide

And now 15 months post transplant back on Valcyte due to a bout with CMV

Oh no Wenchie! How are you doing?

Jenna's transplant was 3 years ago. She now takes Prograf, Cellcept, Vit. D & E, Calcium, baby aspirin, magnesium and Prilosec. She also takes bactrim twice a week. No Prednisone.

[susan parry]

i am sorry Winchie-hope your better soon

[rookiegirl]

Prograf, Myfortic, Prednisone, Bactrim, Vit D, Baby Aspirin.

I was on Valcyte for 3 months after my transplant.  4 months later I was put back on Valcyte for 6 weeks.  Now I'm off Valcyte unless my CMV comes back.

I'll be 10 months post transplant on Jan 20th.

My Dr's never warn me about handling Valcyte.  This made me curious after reading this thread.  So I went on WebMD to read about the meds.  This is surprising to me.  I know better now and I'm calling my Dr. because my husband have touched my meds and we never washed our hands afterwards.

=====================================
"Wash your hands well after handling this drug. Avoid contact with broken/crushed tablets and the liquid form of this medication on your skin, in your mucous membranes and eyes, and avoid breathing in the dust from the tablets. If contact should occur, wash the area thoroughly with soap and water. If this medication gets in your eyes, rinse them thoroughly with plain water.

Do not throw this medication in the garbage or down the drain. Special disposal is required for this medication. Contact your pharmacist for more information."

[jbeany]

Hmmm- glad I'm off the Valcyte.  No one told me any of the warnings, either.  Although, not sure how much I need to worry about not washing my hands after handling it - I just swallowed it, after all, so how much more damage could handling it do?  No one else ever touched my meds.  I'm CMV negative and so was my donor, thankfully.

Currently on 10 mg prednisone once a day, 1.5 prograf twice a day, 360 myfortic twice a day, and 10 mg simvastatin once a day.  I need to ask about vitamins at my next appointment.

[Chris]

You want all my meds or just immunosupressants? 

I have been on CellCept and Prograf for my transplant, no steroids. This was the program I choosed to go with because the other centers used steroids and I had fears about that after reading about them. I tried Myfortic for 3 months, but it was stopped using it because the cost was different each month when I didn't have to pay anything when I was taking CellCeptprior and after switching back.

500 mg of CellCept 2x A day, 2 mg of Prograf 2x A Day,  Norvasc in AM, Diovan PM, 325 mg Enteric Coated Aspirin for pancreas in am, Calcium + Vit D 2X A Day, Vit D, Multi Vitamin, Prosom when needed (well remembered for sleep),  2 meds for side effects of prograf, a skin cream to help prevent skin cancer. Think I remembered them all without opening my medical file on my pc.

[kellyt]

Holy Crap!  I wasn't told anything about Valcyte!  Glad I'm off that!  I was originally glad I was off because it as expensive (but willieandwinnie saved me there - thanks Friend   ), but now I'm also glad I'm off for the reasons given above.  Yikes!

I am 13.5 months post transplant and I'm on Prograf, Cellcept (have been holding this med since about August, but will begin again soon), Prednisone 4 mg (working on getting off), Bactrim (soon to be off), Pepcid, Acyclovire (spelling?), a BP med and a cholesterol med, and Tylenol prn pain.

[okarol]

These are all Antiviral Medications:
Zovirax® (acyclovir), Cytovene® (ganciclovir), and Valcyte® (valganciclovir)
Purpose   Used to prevent or treat viral (herpes) infections; used to prevent cytomegalovirus (CMV) disease

[kellyt]

My doc put me on the acyclovir so that I wouldn't get shingles due to some other medication I'm taking.   And the world goes round and round...

But I don't mind, cause it will also keep the cold sores away!   

[rookiegirl]

I wish I could be off Prednisone too.  I'm down to 10mg/day and according to my Dr, I'll be on it for life due to high PRA.  I wonder if anybody out there with high PRA have to take Prednisone forever?

I should be off Bactrim in March.  I was told I only have to be on it for a year.  So, if this is the case I should only be on Prograf (2/2), Myfortic (3/3), Prednisone, Vit D (1/month), Baby Aspirin (1/day).

[susan parry]

thanks for the responses.  i take rapamune too (anyone else take that?) its an anit rejection drug. 

i am also on bactrum (they told me i would take this the rest of my life?) baby asprin, iron, lisinopril, lovastatin, and pepsid

the valcyte is scary and expensive. 

thanks so much

oh by the way kellyt love the cat picture!!

[openboat]

I'm on Rapamune (6mg daily) and Belatacept (monthly infusion) as my immunosupressives, also Lisinopril for HT and an over the counter multivitamin.  I've had leg edema and mouth ulcers from the Rapamune, but nothing too bad - it's certainly better than what people have had to put up with on other protocols.

I did take Bactrim and Valcyte for 6 months, I don't recall any warning about handling the drug but I got so much paperwork around my transplant time that it may have been in there somewhere.     I think I wound up with one leftover tablet - the extra dose I kept at work.  I'll have to make sure that gets disposed of.

[okarol]

I'm on Rapamune (6mg daily) and Belatacept (monthly infusion) as my immunosupressives, also Lisinopril for HT and an over the counter multivitamin.  I've had leg edema and mouth ulcers from the Rapamune, but nothing too bad - it's certainly better than what people have had to put up with on other protocols.

Hey openboat, Did you have the bone marrow done too? I thought I recalled you were in a study. Is that why the monthly infusions? Do they anticipate that eventually you will have no immuno meds? Thanks.

[BETTY55111]

I am 4 days post transplant and I am on Prograf 3mg 2x day, Cellcept 500mg daily,Valcyte 450mg, Bactrim DS 1x a day. I am on other meds such as insulin and  mds for Blood pressure

[kellyt]

Betty, you must have gotten a great kidney!  Congratulations!         I started on 4 Prograf a.m./p.m. and 4 Cellcept (250 mg each) a.m./p.m.   I'm on lower doses of both currently, though.

[BETTY55111]

I am now o  Prograf 5mg 2x day and Cellcept 750mg

[Chris]

Sorry they increased your meds BETTY.  They will get lowered again I'm sure, he first year is usually the roughest.

[rookiegirl]

Sorry I've been so behind on IHD.  Congrats Betty!

[openboat]

I'm on Rapamune (6mg daily) and Belatacept (monthly infusion) as my immunosupressives, also Lisinopril for HT and an over the counter multivitamin.  I've had leg edema and mouth ulcers from the Rapamune, but nothing too bad - it's certainly better than what people have had to put up with on other protocols.

Hey openboat, Did you have the bone marrow done too? I thought I recalled you were in a study. Is that why the monthly infusions? Do they anticipate that eventually you will have no immuno meds? Thanks.

Yep, they took bone marrow from my donor while they were removing her kidney and kept it on ice to give to me a week after the kidney transplant.  The study (http://clinicaltrials.gov/ct2/show/NCT00565773) is on the combination of daily Rapamune and a monthly Belatacept infusion, with half of the participants getting bone marrow from their donors.

So far everything is great, I have a 1-year biopsy for the study scheduled the first week of April.  If it shows no rejection then I get to come off of the Rapamune.  Weaning takes three months, once that is done I'll have the option of coming off the Belatacept as well.  I could be immunosupressive-free by October.   

[okarol]

I'm on Rapamune (6mg daily) and Belatacept (monthly infusion) as my immunosupressives, also Lisinopril for HT and an over the counter multivitamin.  I've had leg edema and mouth ulcers from the Rapamune, but nothing too bad - it's certainly better than what people have had to put up with on other protocols.

Hey openboat, Did you have the bone marrow done too? I thought I recalled you were in a study. Is that why the monthly infusions? Do they anticipate that eventually you will have no immuno meds? Thanks.

Yep, they took bone marrow from my donor while they were removing her kidney and kept it on ice to give to me a week after the kidney transplant.  The study (http://clinicaltrials.gov/ct2/show/NCT00565773) is on the combination of daily Rapamune and a monthly Belatacept infusion, with half of the participants getting bone marrow from their donors.

So far everything is great, I have a 1-year biopsy for the study scheduled the first week of April.  If it shows no rejection then I get to come off of the Rapamune.  Weaning takes three months, once that is done I'll have the option of coming off the Belatacept as well.  I could be immunosupressive-free by October.   

Great! I have been interested to hear how you're doing and will continue to watch your progress! Good luck!

[Romona]

I am interested too. Sounds promising.

[monrein]

That's fantastic and I'll be very interested in keeping up with how things progress for you.  Being free of the immunosuppression drugs sounds like a dream come true.  Best of luck openboat.

[Wenchie58]

As of my appointment today I am off Bactrim, Valcyte, Folic Acid, half my bp meds, lowered glipizide and added Vitamin D....I'm liking this road!

 

[kellyt]

Dang Wench!  That's amazing!  Congrats.