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Today is day 2 of Andrew's new meds and my husband and I wanted to know if many of those children taking Prograf or other antirejection meds see some of the side effects mentioned in the literature. Or really any side effects at all? If so what have you noticed? Thank you for any help in advance.
CellCept Lisinopril Zantac Proteinuria Pneumonia Cytoxan Prednisone Bronchitis
I started taking 4mg twice a day and last night, I noticed I had some tingling and slight numbness in my legs. Also, when I ws on prograf before, my hands were shaky. Other then that, I haven't had any serious side effects. Hope this helps!
Ive been taking Prograf since I was 16 and Im 20 now, and have never had a single side effect from it. This is why it was recommended for me to take it because it actually makes you feel normal, unlike high amounts of prednisone or cytoxan and there are no cosmetic side effects. Those medications actually make you feel sick (or at least it made me feel sick every day of my life). I love Prograf. It took a while to get where I am now (about 4 years) but I am slowly going towards complete remission.
Best wishes
Amanda
My son has been on Prograf since 18 months of age. He is now 7 1/2 and we have not seen any side effects of Prograf.
Thank you so much for the information! Has your son been able to be in remission?
My 13 yo started Prograf several months ago. She is on 4mg twice daily and has occasional shaky hands. No other side effects that I have observed. She is still on prenisone and lisinopril as well.
My son has been on 3mg of Prograf for the past 6 months and we haven't seen any side effects either. He hasn't ever made it to remission, but the doctor feels that the prograf is helping keep his proteinuria under some level of control compared to where he was. It was determined via testing last month that he has 2 genetic mutations, so really the prograf won't help him gain remission most likely, but his neph does think that i'll help keep his levels "stable", so that's why he's staying on it. Hope things go well for your son!
I read your earlier post about the genetic testing results. So if it is a genetic problem than the assumed reason for the scarring is not his body rejecting? It is all so complicated to me. Thank you for responding and blessings to you and your precious son!
My son is currently on Cellcept and we have been recommended to try another line of medication, as it appears that Cellcept is not effective. In a few days we are most likely going to try prograf. It is nice to hear that there have been limited side effects experienced, because as usual, it can be scary to do the reading. Have any experienced high blood pressure on the medication? We are hoping that our son has a positive experience on this medication once intiated.
Hi, Well I'm sorry to hear cellcept hasn't worked for your son. We'd heard some good things about it from a few others and were keeping that as a possiblity in case the prograf didn't work. My son has had no blood pressure problems so far and has been on his meds for 13 days. How long do they give the meds before knowing if they work? How long did you try cellcept?
Thanks so much for your response. My son, who is 6 years old began cellcept in May/09 and from then until now has experienced 3 relapses on the medication. The nephrologists determine how effective it is based on the medications ability to prevent these relapses from occurring. We are from Toronto and have received three different opinions (two from the states) and all three nephrologists are recommending that we try something else. The statistics for the success of prograf are high and we are trying to focus on the positive! :)
I wish your son only positive outcomes. Thanks again.
HI!
My daughter is currently taking 3 mg of prograf twice a day and has been for probably over 6 months. She has had no side effects so far and we believe it has helped keep her from relapsing so often.
My son Andrew is 6 years old and was diagnosed with MCNS when he was 4. He has had multiple relapses and several hospitalizations. Andrew has taken pred., cytoxan, and cellcept. The pred. worked for a while and then he became resistant (he took pred. for about 2 years) The cytoxan and cellcept did not work at all. For the past 8 months he has been only taking prograf and it has kept him in remission. He has had No side effects. He has had strep throat, 2 sinus infections, bronchitis, and pneumonia and he has not relapsed. It has been a great break for all of us!
My son is 13 yo and has MCNS and has been steroid dependant for 2 years. He has been on Prograf since March, and finally weaned off of Prednisone in August with no relapses since. He is so happy to be off of Prednisone, and has had very little side effects from prograf (2 mg twice a day). He occaisionally has mild shaky hands (intension tremors). He continues to take over the counter Zantac for his stomach, and has had no problems with stomach side effects. We have been blessed that he has not gotten sick with the immunosuppressant. The flu is rampant here in the Dallas area. We are very thankful for Prograf!!
dear Amanda
from your posts your satisfaction for prograf is clear but what is your doc's opinion on toxic effect of prograf in the long run. Also I would like to know of any time frame he has given u for prograf.My son's case and age is quite similar to yours. our doc is delaying starting him on prograf
Hi! That is wonderful news that your son is doing well! We are also in the Dallas area (Forney). I've noticed the last 3 days or so that my son doesn't seem as lethargic since starting on meds almost 2 weeks ago. We are praying that his kidneys are functioning better and that is why he feels a little stronger. It is also good news that the prograf hasn't made your son too susceptible. Thanks so much for the information.
It really isn't toxic. Indeed it is potent though. You just have to monitor your blood levels. I get a blood test every month and a half. We arent even considering lowering the dose or leaning off of it. I am doing so well that we arent worried right now. Maybe in a year or two they will consider it. It really isnt worth weaning off of it having 100% renal function and going back to 20% where I was at before I started it.
I hope that helps a little bit!
Best wishes
Amanda
Thank you all for the responses. I am so happy to hear about all the positive responses. My son is starting prograf tomorrow and of course I am nervous about the whole thing. He will remain on prednisone, and cellcept (cellcept for a month until weaned off).
I am wondering (jkemker2) is lisinopril that your daughter is on, is that a blood pressure medication? If so, do you remember when this need was identified?
My son, including our entire family just received the vaccination for H1N1. I am hoping for a positive outcome from here on in. :) I also hope that all of you continue to experience success. Thanks for your input. Syma
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