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- May 23, 2011
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- 1,568
I have been asked a few times to share our experience with Tacrolimus. It is an immunosuppressant used for organ transplant recipients, and crohns is an off label use. She was put on it to prepare her for a subtotal colectomy, which I cancelled against a physicians advice.
10/3/2011: tacrolimus suggested
3/30/12 Her scope is done. She was unable to control herself all night and went in her bed a few times, but thankfully her doc said she was mainly cleaned out. Her stomach shows mild inflammation, which may be a side effect of all of the meds she has been on. Her small intestine is pristine (WOO HOO!!!), but her large intestine is still severe, worse than it was a year ago. I can't help but feel bad that the last 13 months of treatment was all for nothing...I have been torturing this poor girl with all of these meds for nothing. She has a bunch of polyps that he would have removed had her colon looked better.
4/5/12 We need to make an appointment with a surgeon.
He is putting her on Vancocin anyway, just in case she has an infection on top of her disease, but told us we need to go ahead with the surgery.
I am surprised that she has no deep disease: fissures, fistulas, but she is so severe that she needs a colectomy.
While she hasn't been on EVERY drug, she has been on every CLASS of drug and hasn't shown significant, reliable improvement.
4/12/2012 Today reinforced that we need to do something soon. Izz is on spring break...we went to the zoo. We were there 2.5 hours and visited the bathroom 5 times, plus had to stop once on the 30 minute drive home AND had to rush in as soon as we got here to go. She complained of pain for half of the time we were there (I pushed them in a double stroller...we never would have seen half of what we did without it).
Her c-diff is neg...we let her stop the vanco as taking it was making her vomit 4 x a day and (she claims) making her belly hurt.
Can't wait to get things moving here and get her feeling better!
4/15/2012 We are back on PRED in an effort to curb her weight loss (4# in 2 weeks). She was in the bathroom 16 times so far today and has a crazy rash. She had a birthday party today and sat on my lap for most of it while her friends danced and played.
4/16/2012 Still worried...she vomited up the little I got her to eat for breakfast, plus she was in the bathroom hourly last night and is bleeding again....I think I am going to suck it up and let him admit her for fluids, IV steroids, and possibly a new ng tube.
4/17/12 We are inpatient...more news as I get it!
4/19/12 Izz is feeling the same. She was having less pain in the hospital (due to being on clear liquids), but stooling just as frequently. SHe hasn't been nauseated since admission, though, nor has she vomited.
We are otherwise in a holding pattern.
4/20/12 Izz made it to school today but I had to take her brother to the pediatrician (30 minute drive) and we had to stop at seedy restrooms on the way there AND the way back. I can't wait to get her seen!
4/27/12We start Tacro Sunday, get bloodwork Monday, and start Bactrim Wednesday.
I have to drive 45 minutes to get it tomorrow...some days I hate living in a smaller community- but I am thankful we can get it and get her started.
So 6 am meds plus a supplement (still haven't worked her 3 other supplements back in), 2 mid day and 6 pm meds. No *wonder she's cranky! She's pretty stoked about no more Humi shots...although she got nervous when she saw me get mine out today lol! She wouldn't even face me while I was giving it
4/29/12 started tacro
4/30/12 She is the same...up all night (in bed from 7:30p-9a last night) and complaining of twice as much belly pain as usual. SHe does seem to have more energy when she *is* awake though...pred maybe?
5/5/12 Her frequency has decreased and volume has increased per bm...I am super excited that we may be trending upward with the Tacrolimus. I wish it was a drug that we could use long term...I *knew* I was going to have trouble with a drug that makes her better only to have surgery!
5/14/12She was sunny and sweet again today...
and it was the end of the day before I realized that since she got out of bed this am, she hasn't pooped at all!!! YAYAYYYAY! She is still having nocturnal accidents, but I am shocked that Tacrolimus has made such a huge difference.
...and of course, I am ready to message her doc and find out how they manage kiddos that ARE on Tacro long term (it is an anti-rejection drug but causes kidney failure). Even though the GI and surgeon warned me that so many parents hate to do surgery after tacro works its magic.
Just wanted to share some fab news for a change
5/18/12 SO I discussed this with her doc at length. He is SUPER pleased with how she looks right now and tells me if she still looks/feels good in two months he will rescope her. If she has little inflammation, we can discuss long term tacro options. <3
5/19/12 Our Doc attended our CCFA take steps walk with us today...
he pointed out all I have been missing.
She was FLYING around the playground...laughing, playing, FULL of energy.
5/24/12 ...and more bizarre good news. CRP is down to 2.4. From 60's in April.
5/25/12 Talked to our Boston doc today (should have held off on calling her...ignorance is bliss) who is thrilled she is doing so well BUT feels that we have 5 months to plan her surgery. Organ transplant pts are on it long term because there is no other option; we have another option (surgical), which she wants to pursue. If it stops working (biggest if EVER) we are looking at emergent surgery, which we are trying to avoid.
5/31/12 UGH...she had an accident at school today
Not sure if this is a sign of things to come.
There has been a lot of stress at home-her dad is creating quite a bit of drama lately and I can only hope that it is affecting her and that she isn't going to flare. Plus he is stressing me out, which I am sure she is picking up on.
THe good news is she went to the nurse, got cleaned up/changed/finished going and went on her merry way.
6/18/12 She is still fairly healthy on Tacrolimus and Bactrim, with 2-3 episodes of diarrhea a day and fecal incontinence every one to two days.
7/16/12 Oh, and our CRP??? 1.4 After being in the 60's a few months ago, and not being "normal" for 18 months.
7/27/12 Her bowel is showing improvement with vasculature showing and scattered ulcerations. It is FAR better than ever before, although It still has some distance to go.
Her doc discussed her Tacro use with some peds GI's in Boston this past week. They AGAIN reiterated it is a BRIDGE therapy. When pressed, they claim that there is no documentation using Tacro long term for Crohns. (ummm...there aren't large, well documented studies for a LOT of drugs used for pediatric Crohns.)
12/22/13
Still on Tacrolimus therapy. We have had to increase her dose as she gained quite a bit of weight this year. (We test her Tacro levels, CRP, Potassium, CBC, etc with monthly bloodwork). She also takes Bactrim daily to avoid a certain type of pneumonia. She still has fecal urgency, and occasional leakage, but only stools once a day most days and rarely complains of pain.
There are still no other children under her physicians care on Tacro therapy.
It is an off label use, and it has been stressed to me that it may cause complications down the road. In my mind worst case is cancer or organ failure, both are risks with many other drugs we have tried. When I reread these excerpts and remember how ill my little girl was, I can only hope that we can cross that bridge when we come to it, if ever.
I have one friend whose little boy has been on Tacro for a while...they attempted to wean him and his symptoms returned...they upped his dose again.
Another acquaintance has a little one that has been on tacro (for another disorder) for 8 years- no problems other than those regarding dose.
Edited to add:
4/2/2014:
We traveled to Albany to seek out a second opinion. The doc we visited with would love to try 6mp, although he thinks it is unlikely to help. The risks are significantly lower, and he would like to see it fail before continuing long term tacro therapy. Barring that, he agrees with our path-continue tacro for as long as it will work, and no need to rescope at the present time. He isn't convinced her 24# weight gain last year is gi related, which is reassuring.
I haven't decided whether or not to try 6mp.
7/29/14:
After a week of worsening belly pain and resulting loss of interest in food, we had labs drawn Monday. Her Tacro level is higher than normal at 11, but her CRP is elevated for the first time in years at 22. She will need to be seen this week and likely rescoped.
08/27/14
Izzi started on Carafate and omeprazole. Her belly pain has decreased and she has far more interest in food. We are supposed to get a stool sample and xray, but haven't gotten it done yet. (I swear she only poops on days we can't make the drive lol).
09/14 stool sample normal. Crp still elevated.
10/14 izz is having belly pain and 8-12 bathroom trips a day, including nocturnal. Scopes scheduled for 10/10
10/10/14 upper endoscopy shows mild gastritis. Colonoscopy shows moderate to severe inflammation with a perfect ti. Histology to follow, but it looks as if our time with Tacrolimus is coming to an end.
12/2/2014 We were scheduled to start Simponi tomorrow, so I took Izzi off Tacrolimus 11/24. By 11/26, her pain had increased to a point I was uncomfortable with, so I gave her Tacrolimus again. While it isn't having the desired effect, it is certainly still making a difference.
Simponi is on hold as she is fighting a cold (x 2 months-ugh!) and I am unwilling to introduce another drug into her system until she is "well".
1/7/15 after facing admission, we finally got an answer (her 3 month cough is likely allergies) and got our loading dose of simponi.
2 shots-one in each leg after icing ten minutes. We chose to use injectors as izzi has shown some interest in injecting herself. She claims she hardly felt the injection. That evening she claimed she had less pain. (I wondered if this was partially for to the fact that the injection was far less painful than she anticipated). However, 4 days later she hasn't complained once of pain and is in the bathroom once daily and not at all at night (after weeks of pain, 8 trips a day, and regular accidents).
She will get a second dose two weeks from the first and labs at three weeks.
Right now she is still on tacrolimus but if she continues to do well I may discounting it...I am guardedly excited!
1/18 tried to d/c Tacrolimus again. restarted 1/21 due to worsening symptoms
1/21/15 dose 2 of simponi
the positive response from the first dose has worn off. She is back to regular pain, 8 bathroom trips plus nocturnal, and about 5 accidents a week.
2/20/15 dose 3 of simponi
possibly a reduction in pain. no other changes.
we are going to do simponi every three weeks.
3/13/15 dose 4 of simponi
We upped her tacro dose in early March, as her trough levels were low.
It appears simponi isn't helping, and our gi consult from ct tells us if she had no improvement with remi or humi simponi is unlikely to have an effect.
We will move onto entyvio, with uceris to bridge. She will need to be off tacro before starting either.
Isabelle had her last 4mg tacrolimus dose this morning, 4/24/15.
10/3/2011: tacrolimus suggested
3/30/12 Her scope is done. She was unable to control herself all night and went in her bed a few times, but thankfully her doc said she was mainly cleaned out. Her stomach shows mild inflammation, which may be a side effect of all of the meds she has been on. Her small intestine is pristine (WOO HOO!!!), but her large intestine is still severe, worse than it was a year ago. I can't help but feel bad that the last 13 months of treatment was all for nothing...I have been torturing this poor girl with all of these meds for nothing. She has a bunch of polyps that he would have removed had her colon looked better.
4/5/12 We need to make an appointment with a surgeon.
He is putting her on Vancocin anyway, just in case she has an infection on top of her disease, but told us we need to go ahead with the surgery.
I am surprised that she has no deep disease: fissures, fistulas, but she is so severe that she needs a colectomy.
While she hasn't been on EVERY drug, she has been on every CLASS of drug and hasn't shown significant, reliable improvement.
4/12/2012 Today reinforced that we need to do something soon. Izz is on spring break...we went to the zoo. We were there 2.5 hours and visited the bathroom 5 times, plus had to stop once on the 30 minute drive home AND had to rush in as soon as we got here to go. She complained of pain for half of the time we were there (I pushed them in a double stroller...we never would have seen half of what we did without it).
Her c-diff is neg...we let her stop the vanco as taking it was making her vomit 4 x a day and (she claims) making her belly hurt.
Can't wait to get things moving here and get her feeling better!
4/15/2012 We are back on PRED in an effort to curb her weight loss (4# in 2 weeks). She was in the bathroom 16 times so far today and has a crazy rash. She had a birthday party today and sat on my lap for most of it while her friends danced and played.
4/16/2012 Still worried...she vomited up the little I got her to eat for breakfast, plus she was in the bathroom hourly last night and is bleeding again....I think I am going to suck it up and let him admit her for fluids, IV steroids, and possibly a new ng tube.
4/17/12 We are inpatient...more news as I get it!
4/19/12 Izz is feeling the same. She was having less pain in the hospital (due to being on clear liquids), but stooling just as frequently. SHe hasn't been nauseated since admission, though, nor has she vomited.
We are otherwise in a holding pattern.
4/20/12 Izz made it to school today but I had to take her brother to the pediatrician (30 minute drive) and we had to stop at seedy restrooms on the way there AND the way back. I can't wait to get her seen!
4/27/12We start Tacro Sunday, get bloodwork Monday, and start Bactrim Wednesday.
I have to drive 45 minutes to get it tomorrow...some days I hate living in a smaller community- but I am thankful we can get it and get her started.
So 6 am meds plus a supplement (still haven't worked her 3 other supplements back in), 2 mid day and 6 pm meds. No *wonder she's cranky! She's pretty stoked about no more Humi shots...although she got nervous when she saw me get mine out today lol! She wouldn't even face me while I was giving it
4/29/12 started tacro
4/30/12 She is the same...up all night (in bed from 7:30p-9a last night) and complaining of twice as much belly pain as usual. SHe does seem to have more energy when she *is* awake though...pred maybe?
5/5/12 Her frequency has decreased and volume has increased per bm...I am super excited that we may be trending upward with the Tacrolimus. I wish it was a drug that we could use long term...I *knew* I was going to have trouble with a drug that makes her better only to have surgery!
5/14/12She was sunny and sweet again today...
and it was the end of the day before I realized that since she got out of bed this am, she hasn't pooped at all!!! YAYAYYYAY! She is still having nocturnal accidents, but I am shocked that Tacrolimus has made such a huge difference.
...and of course, I am ready to message her doc and find out how they manage kiddos that ARE on Tacro long term (it is an anti-rejection drug but causes kidney failure). Even though the GI and surgeon warned me that so many parents hate to do surgery after tacro works its magic.
Just wanted to share some fab news for a change
5/18/12 SO I discussed this with her doc at length. He is SUPER pleased with how she looks right now and tells me if she still looks/feels good in two months he will rescope her. If she has little inflammation, we can discuss long term tacro options. <3
5/19/12 Our Doc attended our CCFA take steps walk with us today...
he pointed out all I have been missing.
She was FLYING around the playground...laughing, playing, FULL of energy.
5/24/12 ...and more bizarre good news. CRP is down to 2.4. From 60's in April.
5/25/12 Talked to our Boston doc today (should have held off on calling her...ignorance is bliss) who is thrilled she is doing so well BUT feels that we have 5 months to plan her surgery. Organ transplant pts are on it long term because there is no other option; we have another option (surgical), which she wants to pursue. If it stops working (biggest if EVER) we are looking at emergent surgery, which we are trying to avoid.
5/31/12 UGH...she had an accident at school today
Not sure if this is a sign of things to come.
There has been a lot of stress at home-her dad is creating quite a bit of drama lately and I can only hope that it is affecting her and that she isn't going to flare. Plus he is stressing me out, which I am sure she is picking up on.
THe good news is she went to the nurse, got cleaned up/changed/finished going and went on her merry way.
6/18/12 She is still fairly healthy on Tacrolimus and Bactrim, with 2-3 episodes of diarrhea a day and fecal incontinence every one to two days.
7/16/12 Oh, and our CRP??? 1.4 After being in the 60's a few months ago, and not being "normal" for 18 months.
7/27/12 Her bowel is showing improvement with vasculature showing and scattered ulcerations. It is FAR better than ever before, although It still has some distance to go.
Her doc discussed her Tacro use with some peds GI's in Boston this past week. They AGAIN reiterated it is a BRIDGE therapy. When pressed, they claim that there is no documentation using Tacro long term for Crohns. (ummm...there aren't large, well documented studies for a LOT of drugs used for pediatric Crohns.)
12/22/13
Still on Tacrolimus therapy. We have had to increase her dose as she gained quite a bit of weight this year. (We test her Tacro levels, CRP, Potassium, CBC, etc with monthly bloodwork). She also takes Bactrim daily to avoid a certain type of pneumonia. She still has fecal urgency, and occasional leakage, but only stools once a day most days and rarely complains of pain.
There are still no other children under her physicians care on Tacro therapy.
It is an off label use, and it has been stressed to me that it may cause complications down the road. In my mind worst case is cancer or organ failure, both are risks with many other drugs we have tried. When I reread these excerpts and remember how ill my little girl was, I can only hope that we can cross that bridge when we come to it, if ever.
I have one friend whose little boy has been on Tacro for a while...they attempted to wean him and his symptoms returned...they upped his dose again.
Another acquaintance has a little one that has been on tacro (for another disorder) for 8 years- no problems other than those regarding dose.
Edited to add:
4/2/2014:
We traveled to Albany to seek out a second opinion. The doc we visited with would love to try 6mp, although he thinks it is unlikely to help. The risks are significantly lower, and he would like to see it fail before continuing long term tacro therapy. Barring that, he agrees with our path-continue tacro for as long as it will work, and no need to rescope at the present time. He isn't convinced her 24# weight gain last year is gi related, which is reassuring.
I haven't decided whether or not to try 6mp.
7/29/14:
After a week of worsening belly pain and resulting loss of interest in food, we had labs drawn Monday. Her Tacro level is higher than normal at 11, but her CRP is elevated for the first time in years at 22. She will need to be seen this week and likely rescoped.
08/27/14
Izzi started on Carafate and omeprazole. Her belly pain has decreased and she has far more interest in food. We are supposed to get a stool sample and xray, but haven't gotten it done yet. (I swear she only poops on days we can't make the drive lol).
09/14 stool sample normal. Crp still elevated.
10/14 izz is having belly pain and 8-12 bathroom trips a day, including nocturnal. Scopes scheduled for 10/10
10/10/14 upper endoscopy shows mild gastritis. Colonoscopy shows moderate to severe inflammation with a perfect ti. Histology to follow, but it looks as if our time with Tacrolimus is coming to an end.
12/2/2014 We were scheduled to start Simponi tomorrow, so I took Izzi off Tacrolimus 11/24. By 11/26, her pain had increased to a point I was uncomfortable with, so I gave her Tacrolimus again. While it isn't having the desired effect, it is certainly still making a difference.
Simponi is on hold as she is fighting a cold (x 2 months-ugh!) and I am unwilling to introduce another drug into her system until she is "well".
1/7/15 after facing admission, we finally got an answer (her 3 month cough is likely allergies) and got our loading dose of simponi.
2 shots-one in each leg after icing ten minutes. We chose to use injectors as izzi has shown some interest in injecting herself. She claims she hardly felt the injection. That evening she claimed she had less pain. (I wondered if this was partially for to the fact that the injection was far less painful than she anticipated). However, 4 days later she hasn't complained once of pain and is in the bathroom once daily and not at all at night (after weeks of pain, 8 trips a day, and regular accidents).
She will get a second dose two weeks from the first and labs at three weeks.
Right now she is still on tacrolimus but if she continues to do well I may discounting it...I am guardedly excited!
1/18 tried to d/c Tacrolimus again. restarted 1/21 due to worsening symptoms
1/21/15 dose 2 of simponi
the positive response from the first dose has worn off. She is back to regular pain, 8 bathroom trips plus nocturnal, and about 5 accidents a week.
2/20/15 dose 3 of simponi
possibly a reduction in pain. no other changes.
we are going to do simponi every three weeks.
3/13/15 dose 4 of simponi
We upped her tacro dose in early March, as her trough levels were low.
It appears simponi isn't helping, and our gi consult from ct tells us if she had no improvement with remi or humi simponi is unlikely to have an effect.
We will move onto entyvio, with uceris to bridge. She will need to be off tacro before starting either.
Isabelle had her last 4mg tacrolimus dose this morning, 4/24/15.
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