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TOPIC: experience with cell cept

experience with cell cept 1 month 3 weeks ago #68837

  • gpT2
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Closing in on a year with ITP, our now 3 year old has not had success with NPlate or Promacta. After recent nosebleed and count of 4, docs had made decision to stop Promacta and start cell cept. Has anyone had experience with this drug on a 3 year old? Some discussion about layering on Rituximab later on, if deemed necessary. All insights are welcome. Thanks.

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experience with cell cept 1 month 1 week ago #68921

  • Hal9000
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Off hand, I can't recall a report on here of a child being treated with MMF / CellCept before.

For adults, MMF often works when one doesn't respond to steroids - which I don't think is the case here.
"Mycophenolate mofetil (MMF) for the treatment of steroid-resistant idiopathic thrombocytopenic purpura."
www.ncbi.nlm.nih.gov/pubmed/12756016?dopt=Abstract

I guess a dose of Promacta higher than 75mg was a missed opportunity?

IMHO, the combination Rituxan simultaneously with Promacta or Nplate has a better chance than of MMF working.

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experience with cell cept 1 month 2 days ago #68943

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Thank you, again, Hal9000 for your input. I cannot express how much I appreciate it. Today's count was 2, after almost 2 weeks of cell cept. Docs plan to add steroids to the cell cept regimen. Initial plan was to layer on Rituximab, but that isn't going to happen yet. My little grandson is very bruised, along with much pettichae. I just read your comments regarding a 10 year old girl and the use of increased doses of Promacta. Our guy only weighs about 30 pounds, so 75mg seemed like a lot to me. I was unaware of the higher dosing of Promacta until I read your comments. And, to clarify, he has not responded to previous steroid treatments. Unfortunately, this nightmare just seems to get worse and worse. I'm feeling pretty helpless.

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experience with cell cept 1 month 2 days ago #68944

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Cellcept can take weeks or even months to start to work. Is watch and wait not an option. It's usual for children.

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experience with cell cept 1 month 2 days ago #68945

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It is a scary medication, I'm sorry your grandson has to take it gpT2 !
I hope he does well!!
"Instead of wasting your time worrying about symptoms, just get it checked out" -Nieca Goldberg, MD

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experience with cell cept 1 month 2 days ago #68946

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JJ, Doctors felt "watch and wait" was not an option since he had a nosebleed while on 75mg of Promacta. His count was 4 at that time. And, as I said, he's bruised all over with multiple patches of peticchae.
Thanks for you input. I hate that he's been on so many drugs. And, to make it worse, none have improved his counts. It's a nightmare to imagine him having to be on this drug for weeks or months before a positive response.

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experience with cell cept 1 month 2 days ago #68947

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I agree MelA. It seems very frightening to me. It seems that each drug gets exponentially worse. And, as "powerful" as these drugs are,they do nothing for him. It's heartbreaking.

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experience with cell cept 1 month 1 day ago #68948

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Did your grandson ever try IVIG and Predinson combination? It was the only thing working for my 12 years old son at the beginning of his ITP journey. Yes, 75 mg Promacta is high for a 3 years old. Our hemo was very hesitated to increase my son’s dose to 75 mg back then even thought he is over 120 lb

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experience with cell cept 1 month 1 day ago #68949

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th8899, I do not believe he has ever had that combo. But, I thank you for sharing that option with us.

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experience with cell cept 2 weeks 4 days ago #69021

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Hi gpT2. My two years old daughter is on Cellcept since last September. It didn’t do miracles and doctors will probably decide to quit therapy with Cellcept after this whole Covid19 situation ends. However I could notice some improvement: her counts tend to be between 10-20 K now (before Cellcept it used to be between 0-10 without treatment), she had IVIG once while being on Cellcept and her counts went up to 150 and stayed high for a month which was like miracle (IVIG was usually no success before, counts used to go up to 40-50 K and go down after just a few days). Another very interesting thing - because of taking immunosuppressant she naturally gets ill more often and her counts go a little bit up every time she’s I’ll

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experience with cell cept 1 week 2 days ago #69124

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Karolina, was a bit surprised with this Cellcept treatment news. Went back and reread comments.

I've not seen Cellcept and IVIG treatment combination before with a row 2 (steroid alone and IVIG alone non responders) individual here. Then on top of that, you got a full count response, nice ! Hmmm, interesting. Recall that th8899's son (also row 2) responded well to Prednisone and IVIG combination. So it now looks like, for a row 2 individual, either Prednisone OR Cellcept, with IVIG, treatment combination works.

IMHO, the sooner she gets on Promacta or Nplate the better. It's a quality of life issue. As I think we've talked about before, remission is characteristic of row 2 given enough time.

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experience with cell cept 1 week 2 days ago #69125

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gpT2, I went back and reread comments.

Based on my interpretations of steroid and IVIG responses, the situation here is less clear. More of a guessing game. Thinking about Cellcept/MMF treatment outcomes. One possibility is that the Cellcept response is good. In that case (only row 4 is at work) perhaps treatment with that drug will lead to ITP remission.

A second possibility is that the Cellcept response is poor, with little to no rise in counts. In that case (possible row 1 & 2 at work) what I've mentioned before might be a good next treatment. That is, Rituxan/Rituximab concurrently with either Promacta or Nplate. Layering on a bit of steroids is probably good in this situation too.

A third possibility is that the Cellcept response is in between the two - aka a partial response. More guessing. Cross that path if the day comes.

Most of those that are row 4 will respond to a high dose of Nplate - which didn't happen here. So I think the second possibility that I mentioned has the highest probability of occurrence.

About neutropenia. If the doctor doesn't think Evans is applicable here, then perhaps neutropenia is a result of Parvovirus B19 infection and was one of the two viruses that triggered ITP?

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experience with cell cept 1 week 1 day ago #69127

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Hal9000, I do not believe parvovirus was one that tested positive, but I will try to go back in records and find that. Would you refer me to the site where these"rows" that you refer to can be found? I have seen you mention them in other posts and I am not familiar with them. And, when you mention one possibility of being a "good" response to cellcept, what is considered a "good" response? Thanks.

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experience with cell cept 1 week 1 day ago #69133

  • mrsb04
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gpT2
The rows are a theory that Hal9000 came up with about 3 years ago regarding platelet antibodies and treatment responses to particular antibodies . I doubt you will find much of an evidence to support it in any medical papers. I wouldn't worry too much about it.

Do you know if your grandson been tested for H Pylori? If not it would definitely be worth doing so.

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experience with cell cept 1 week 1 day ago #69138

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mrsb04,
Thank you for your response. I will check to see if he was tested for that. (He was negative to the parvovirus that Hal9000 mentioned.) How does H Pylori relate to ITP? I know it has potential GI issues, but I do not know the connection to ITP.
The following user(s) said Thank You: mrsb04

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experience with cell cept 1 week 1 day ago #69139

  • mrsb04
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gpT2
H Pylori is a known cause of ITP. So would be wise to ensure your little one has been tested.

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