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Losing weight with ESRD - Kidney Failure

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TOPIC:   Low Prograf Levels (Transplanted Patients) 


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NANAOF3LUVSJC
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1/9/14 10:58 P

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My son is a kidney transplant recipient and has been on generic prograf for at least 3 years and is doing fine. But today his labs show low levels and his kidney doctor is puzzled to why so we had to go up on prograf.

There's a difference between interest and commitment. When you're interested in doing something, you do it only when it's convenient. When you're committed to something, you accept no excuses; only results.

One must eat to live and not live to eat.
- Moliere
"You will never regret choosing to work out today, but you will regret choosing to skip it." - Coach Nicole
"Follow the three R's: Respect for self, Respect for others, and Responsibility for all your actions."


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GLYNN08
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1/10/10 2:16 P

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I just started the generic Prograf - 3mg twice daily and was wondering if it would make a difference. I'm curious on the outcome. Did the doctor relate the low numbers to the generic? Thank you for posting this! :)



APRILMAY1956
APRILMAY1956's Photo Posts: 919
11/4/09 12:36 A

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My doctor told me he wasn't concerned yet, about 1 low level on the Prograf and that generic Prograf was OK. I'm still going to be vigilant with my labs from now on. -Leyla

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KOI239
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11/3/09 1:31 A

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I don't know what my Prograf levels are, but I take 3mg am and pm. Creatine runs around .7 My drug company wants to start me on the new Generic, but I have not checked with my doctor yet.


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APRILMAY1956
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10/25/09 1:59 A

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Hi Wan, Beth and Shari -I noticed my last prograf level was really low 4.5. I have to call the doctor next Monday, to find out what's up. I take 1 1/2 mg prograf twice a day. It may not be enough.
Another thing -my pharmacy is substituting generic prograf this time. I hope that it doesn't foul me up. Anyone else getting generic prograf or cellcept? My doctor put me on biweekly labs after cellcept was switched to generic. Now I don't know what will happen. Leyla


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BREEZE42
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10/14/09 8:03 P

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hi
i'am a transplant patient also i live in Maine i have been throguh 2 transplants andALSO HAVE bad VEINS !!! LIKE MAYBE 2 IF I'AM LUCKY .I GO EVERY 6 MONTHS NOW FOR CHECK UP BUT AM ON COUMIDEN ALSO . HOPE TO TALK TO YOU MORE I'AM NEW AT SPARK PEOPLE SO FORGIVE ME IF I DON'T ANSWER RIGHT OFF ITS NICE TO TALK TO SOMEONE WHO UNDERSTANDS WHAT WE ARE GOIN THROUGH SO HARD TO EXPLAINN ..LOL AS U PROBLEY KNOW WELL GOOD LUCK !! I GAINED WEIGHT FROM MY TRANSPLANT AND LOST ALL BUT ITS STARTING TO CREEP UP AGAIN ...PLUS I'M 44 AND MY TRANSPLANT WAS AT 22 ..(1ST ONE ) WENT BACK ON DIALYSIS FOR 1 YR AND GOT A 18 YR OLD CADAVER ..TTY SOON I HOPE MY FRIEND TOLD ME ABOUT THIS SPARK PAGE ITS GOIN TO BE INTERESTING ..

BETH



JOHNWU235
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9/29/09 12:46 A

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hello, i am Wan and new here.
i had an intestine transplant on July,2009.
now i have some trouble to handle my medication, such as prograf.

when i am at home the level of the prograf always low.
i have no idea why always like that.

do you guys have any this kind of experience?
is that relate to eating food with taking prograf?





SHANTIE_AIRHEAD
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2/4/08 3:51 A

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Yeah you may have to. I changed doctors after my transplant because it's a lot easier for me to have most of my medical appointments at Stanford (where I got the transplant) than to have this one at this place and so on. I also schedule it so that when I go to Stanford I'm getting 2 or 3 things done at once, like blood work plus seeing a doctor. And since I only have blood work every 3 months now, it's going to be a lot easier to schedule all my appointments around blood work days.

My transplant doctors have said that it's ok for me to get my blood work drawn through my AV fistula because I have such terrible veins. An RN has to draw the blood, it can't be done by a regular lab tech. And they have to be certified for drawing through the fistula. Before I had the blood drawn this way, I was being stuck 3 or 4 times each time I had my blood drawn, and there wasn't always the guarantee that they'd get sufficient blood. A few times the blood either clotted or hemolyzed as well. It was so terrible. I also have trouble with getting IV's and if I have to be hospitalized I usually get a central line put in.



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APRILMAY1956
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2/4/08 12:04 A

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Hi Shari and other members-I don't have a problem with the pharmacy-they have been great. They call me when the doctor doesn't respond. I may have to find a new doctor. / AprilMay1956


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SHANTIE_AIRHEAD
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1/31/08 1:18 A

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AprilMay--
I too get my meds delivered, and I had a tough time getting my delivery schedule on track as well--but for the opposite reason as you! A few years ago my Prograf was decreased from 3 mg both day and night to 2 mg/day and 3 mg/night. I chose to use up the prescription I already had but with the new dose, and in the meantime the new prescription arrived. However, I've never had a problem with the doctor faxing the prescription. My pharmacy calls me once a month to verify which meds I need refilled, and I tell them whether or not there have been any changes and/or whether or not I've run out of refills on a given med. They do this about a week before I'm due for my refills, so that gives them enough time to contact the doctor for the new prescription. Next time try calling the pharmacy directly and telling them of the change, then they can verify it with your doctor and get you the new prescription a lot quicker.



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APRILMAY1956
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1/29/08 2:06 A

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Shari - My Prograf had to be increased due to the low levels on my last 2 labs. What was rough, was I get my anti-rejection meds through the mail, and my doctor took his sweet old time faxing the pharmacy. I'm a week behind starting the new dose. I guess I'll wait till late next week to get my labs done again. Fluff-I have the shaking and hair loss like you do from the Prograf. What is eyritis or iritis? Thanks again./ am


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SHANTIE_AIRHEAD
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1/17/08 10:18 P

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I don't really know much about the medication, but my doctors at Stanford University Hospital (where I received the transplant) told me about a similar study a few years ago; I opted not to take part, since I already agreed even before the transplant to take part in a study that tracks transplanted kidney function over the first 5 year period after transplantation. I believe I have one more session of the study to complete, and that will be either later this year or early 2009. A good resource for medical information in general is WebMD.com. Try looking up the medication there and see what you get. Anyway, good luck to you whether or not you take part in the study!

Shari



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FLUFF-N-STUFF
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1/17/08 8:25 P

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Hi I had a transplant in July of 2006. Have any of you had the side effects from prograf? I seem to have got everyone except the seizures so far.
I went to NW Memorial in Chicago for the surgery, and they say my kidney function is perfect, so I can go on a research study for rasemune (I probably spelt that wrong) Sorry. Have any of you heard anything about the study or others on it?

Hi I am Fluffy

Fantasy Forrest dorm at
GonnaBFit University


 
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SHANTIE_AIRHEAD
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1/15/08 8:51 P

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I agree. After a couple of months of the Prograf being low, perhaps it's time to adjust the dosage. Different people respond to the meds in different ways. I've been on a 2 mg/day and 3 mg/night dosage for probably the last 2 years, and I've never had problems with low levels on lab days at all. Anyway, good luck getting this issue resolved.

Shari



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APRILMAY1956
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1/14/08 12:54 A

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My latest creatinine was 1.01, but my Prograf was 3.4, I'm going to have to call the doctor tomorrow as this is the second month in a row that my Prograf levels were low. I'm getting concerned. / Leyla


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SHANTIE_AIRHEAD
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1/12/08 11:08 P

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Leyla, thanks for the input!

Hope everyone's new year is going great so far; I know mine is! I just saw the transplant doctor on 1-10-08 and I'm now down to blood work every 3 months! Creatinine is steady @ .8, so that's good. How's everyone else doing?

Shari



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APRILMAY1956
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1/12/08 1:40 A

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Shari - I got my transplanted kidney from a 46 year old woman and my current creatinine is 1.2; so that goes with your doctor's theory./ Leyla


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JAMIE4496
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12/28/07 10:11 A

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I'll have to quiz my nephrologist regarding the male-female creatinine. I like to keep him on his toes. (He probably hates to see me coming.)

Happy New Year Teammates!
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SHANTIE_AIRHEAD
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12/22/07 3:44 A

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The last time I was in the hospital, back in October, one of the doctors who saw me gave me an interesting bit of information. It seems that generally, a donated kidney from a female tends to run with slightly higher creatinine (around 1.2) than that of a male (around .8). Kind of weird how that goes huh? He had asked me whether my kidney was from a male or female, and I said I didn't know. Then he asked me what my creatinine usually runs, and when I told him around .8 or .9 he told me that bit of info! And on that note, I hope everyone here has a great holiday.



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APRILMAY1956
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12/22/07 12:25 A

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Merry Christmas Team- Good job on your creatinine levels Jamie and Shari. I have to repeat my labs very soon. Will keep you posted, but so far my creatinine has been 1.2 lately. Still feeling good and I have been doing more walking lately.
All my best to the team. -Leyla


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SHANTIE_AIRHEAD
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12/19/07 9:49 P

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Merry Christmas everyone! I'm on every other month labs now, so the last time I had them done was when I was in the hospital the week before Halloween--they had gone back to the normal range, from the creatinine being a staggering 2.1 to a respectable .8 or .9!

I've had problems with my iron all my life. My regular nephrologist had given me paperwork to have an iron study done, and the time I was to do it was the week I had ended up in the hospital, so I just told my transplant doc about it and they had the labs drawn while I was still in-house...I ended up on iron pills. The thing is, I'm a very short person--only 4'8"--so a lot of OTC meds I just reach straight for the children's formulas, and take a dose that's about halfway between the dose for a 6-year-old and the dose for an under-12-year-old. That works for me. I see my regular nephrologist right after Christmas, and I get my labs the same day. I'm going to talk to him about how I take OTC allergy/cold meds and see if perhaps I don't need a full prescription strength iron tab, because those pills really messed up my stomach, even if I took them with crackers or something light. I have acid reflux already as it is, so I don't really need something else messing up my stomach on top of that. Anyway, you all have a great holiday season!

Hugs & Kisses,
Shari



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JAMIE4496
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12/19/07 8:30 A

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Hi Gang! Merry Christmas!
I think my family is going to wait until the after-Christmas sales to do our shopping (except for the nephew.) It just makes more sense to me. We are all old enough to wait a couple more days.

My labs are only every 3-4 months. My calcium was elevated last time and there was a chance I was going to have to change from cyclosporine (Neoral) to another immunosuppressant. It turns out that years of Neoral use can look like the same things that indicate a slow rejection. Only by changing medication can you know for sure without doing a biopsy (so my doctor says.) Fortunately my creatinine came down when I held off on the multi-vitamin for a week before another lab was drawn. He told me the elevated calcium could be what drove my numbers up.

Our weather in southern Indiana has been relatively mild so far. Our first snowfall was this past Saturday with no accumulation. We've also had a day in the 70's this month!

I'm so glad you are feeling good Leyla! Keep it up!

Edited by: JAMIE4496 at: 12/19/2007 (08:31)

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APRILMAY1956
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12/18/07 1:16 A

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Hi Sheri, Mary, Jamie, Pat, Dove and all others on this team- How are your lab results this month? My prograf was on the low side, but I was a hour late getting my labs done, because the lab was backed up. I need to repeat my labs soon.
How is everyone handling the weather? Ready for the holidays? I'm generally feeling good, How about everyone else? Happy Holidays! / -am-Leyla


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SHANTIE_AIRHEAD
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12/8/07 10:57 P

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My anniversary was terrific! In addition to taking myself out to 2 of my favorite eateries--one for breakfast, one for lunch, I baked a batch of brownies and went across town to my old dialysis clinic to see old friends and staff. It was great seeing people I haven't seen in 3 years, and of course I told the dietician and the social worker both about SparkPeople! There are several people at my old dialysis clinic who need to lose weight before they can get their transplants, so SparkPeople would be an ideal way for them to do so. I hope some of them sign up!



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APRILMAY1956
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12/8/07 2:50 A

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Shari - How was your anniversary day? My 3rd anniversary will by 5/11. I plan to celebrate when it rolls around. Take care./ am


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SHANTIE_AIRHEAD
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12/4/07 10:28 P

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Thanks for the well wishes guys! I plan on taking good care of this kidney for as long as I can! I hope everyone here has a wonderful holiday season. April, thank you. I sincerely hope the donor family is proud.



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JAMIE4496
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12/4/07 11:55 A

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Have a BIG TIME for your anniversary, Shari!
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APRILMAY1956
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12/4/07 2:43 A

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Shari - Congratulations on Anniversary #3, and here's wishing you many more. It's great that you and others on this team can relay their tips for success with dialysis and transplant on this page. It's a wonderful support. Your donor family can be proud of you. Sincerely - AM

Edited by: APRILMAY1956 at: 12/4/2007 (02:43)

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SHANTIE_AIRHEAD
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12/4/07 12:57 A

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For my first 2 anniversaries, my mom made a special dinner for me--I even invited some friends for the 1st one. This year I'm going to spend it mostly alone, although I do plan on going back to my old dialysis clinic to celebrate with the staff. I think I'll make up a batch of brownies to share with them. It's this Friday, and I have most of the day planned out. Thanks for telling me about the free dessert thing...maybe I'll cap the day off with a light dinner and then a movie!

Shari



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JAMIE4496
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12/3/07 8:10 A

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Shari, you are so right in continuing to remember your donor family, and their gift to so many. I did write a letter to my donor family (it was not easy.) It was just beginning to be allowed that you could actually meet the family if both sides chose to-- back when I had my transplant. I chose not to...I knew I would feel that I had to make them proud...as if I needed to prove that I was worthy of such a gift. (I know this is silly, but I also know how my mind works.) In a nutshell I told the family that I hoped I could have as positive an effect on as many people in my whole lifetime as their loved-one did in the short time they were with us.

I usually celebrate my TX anniversary like it was another birthday. I even get free dessert when I let the restaurant know what I'm celebrating! If it were me that was a part of a donor's family, I would derive joy out of knowing people who's lives were enriched are having a good time.


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SHANTIE_AIRHEAD
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12/3/07 12:55 A

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Jamie--as to that last sentence, I couldn't have said it better myself! I'm glad we have a long-timer like you here. I'm coming up on anniversary #3, and I'm grateful for every day I've had to this point and every day that I have after today. I still do think about the donor family sometimes, although I've chosen not to contact them. I realize that in their greatest moment of pain and sadness, they chose to give so many people, not just me, the greatest gift that could ever be bestowed on anyone. I HAVE to look at it as a gift, otherwise I will dwell on the loss and pain that the family has suffered, and that just does everyone a whole lot of no good. I hope everyone has a very happy holiday season.



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JAMIE4496
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12/1/07 7:50 P

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The lower Prograf level should not indicate rejection. The fact that your level is not where it should be means your immune system isn't suppessed enought to not notice your transplant. That doesn't mean you will lose the kidney! There may be a small amount of damage until your level is up, but with a new, healthy kidney, that will be nothing to worry about. There will always be a chance of rejection. I've had my kidney for over 11 years now and it's still always the first thing I think about when test numbers are off, or I get any kind of odd feeling in that area. You can't dwell on it, or you'll be missing the great new life you've been blessed with!


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DOVE27
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11/30/07 8:48 P

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Thanks for letting me know and for all the advice.
When I went for the follow up this week, my levels had dropped even more from 3.9 to 3.5 even with the increase in prograf from 5mg (2.5 9:am and 2.5 9:pm) a day. My Doctor again increased the prograf to 6mg daily. I return to see him on Monday for the results. I also plan on asking my Doctor if, decreasing level a sign of kidney rejection.
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LOVELYONE94
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11/29/07 6:18 P

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I am on cyclosporine and finding the right level can be quite challenging. It is very impotant to take your meds at the same time eveyday. That way your doctor will be able to adjust your meds if needed. It is very important to take the meds on time. This is one of the main causes of graft rejections. Take care....


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SHANTIE_AIRHEAD
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11/21/07 2:46 A

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For the first several months or even couple of years after a transplant, your doctor will increase or decrease your Prograf levels occasionally. Eventually you'll get to a dosage that keeps the blood level at a good rate. I started out at 4 mg each dose, then went down to 3 each dose. Now I'm at 2 mg day/3 mg night. One thing that might make your Prograf level a bit low is if you take it too many hours before your lab appointment. If it's been more than 12 hours since you took your last dose of Prograf, then your level might be a little low. If it's been less than 12 hours, it might be a little high. It's a fine line trying to get the dosage just right, but eventually you'll get to that point. Good luck!

Shari



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SHANTIE_AIRHEAD
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11/21/07 2:46 A

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For the first several months or even couple of years after a transplant, your doctor will increase or decrease your Prograf levels occasionally. Eventually you'll get to a dosage that keeps the blood level at a good rate. I started out at 4 mg each dose, then went down to 3 each dose. Now I'm at 2 mg day/3 mg night. One thing that might make your Prograf level a bit low is if you take it too many hours before your lab appointment. If it's been more than 12 hours since you took your last dose of Prograf, then your level might be a little low. If it's been less than 12 hours, it might be a little high. It's a fine line trying to get the dosage just right, but eventually you'll get to that point. Good luck!

Shari



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WOWEETOO
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11/21/07 1:14 A

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don't know as i have not been here long enough to know but there are a lot of people on here with a lot of information so just hang in there and they will be posting soon hugs to you for sure mary

TODAY IS LIFE THIS IS NOT A DRESS REHEARSAL

there is no cause when there is no effect km

i can do that, but not on a tuesday
for that is my day of thrust in the opposite direction -
off the starboard bow
over the hurdles,
and down the shute.

last is just the slowest winner. c.hunter boyd

people often say that motivation doesn't last. well neither does bathing - that's why we recommend it daily. zig ziglar

if i stitch fast enough do


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DOVE27
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11/21/07 12:59 A

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Today my lab results showed my prograf levels to be low, 3.9, and my doctor increased my dosage of prograf.
Can you tell me what happens to the immun. system when the prograf level gets too low?
I have to return in one week for lab again and will present this question to my Doctor.
My transplant was 9/10/06 and my levels have been running good until todays visit.


 
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