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TOPIC: Promacta

Promacta 6 years 6 months ago #29192

  • SMorton1973
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My daughter was diagnosed with ITP in 2002. In the past 10 years we have treated mainly with IVIG. We had a short time of treating with Prednisone , but due to the side effects I decided to go back to IVIG. Due to scar tissue on her veins it is becoming harder to put in the IV and she is having a lot of anxienty when we have to treat. The results with the IVIG are very good ( the last time she was treated was 6 months ago ) , but she said she would rather take an oral medicine then be subjected to anymore IV's. Being that she is 15 I think she is at an age where I want to take her wishes into consideration. Promacta at this point is the only consideration for treatment I have at this point , since I refuse to let them remove her spleen. I was wondering if any of your children have been on Promacta for any length of times and how you feel about the medicine in general. I am worried about side effects and would rather have information from parents like me , instead of getting hand fed oppinions about their medicine from the pharamceutical company that sells it. any information would be appreciated. Thank you in advance.

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Promacta 6 years 6 months ago #29194

  • alisonp
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I think promacta is only available as a drug trial for children at the moment. My 14 year old son recently tried and failed to get on the stage two trial - you have to have liver results within a certain range and that proved nearly impossible for him. Three months of bad liver results were followed by an unexpectedly high count of 41, so we gave up! I think we are just going to go back to his normal "do nothing" approach.

I regularly correspond with another parent whose son is on the trial and he had the placebo for the first 12 weeks and has had no response at all to the real drug. She says its been ok to take, although there are dietary restrictions (nothing with calcium within a few hours)
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Promacta 6 years 6 months ago #29195

  • SMorton1973
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Her doctor told her today she would be willing to put her on it. That's why I thought it is out of the trial phase. We don't have to go back for another month. So I want as much input as possible before then. I guess I really posted this in the wrong section. Maybe one one of the Moderators can move it for me. Sorry.

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Promacta 6 years 6 months ago #29205

  • april
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There used to be a mom on here who had her 11-year-old daughter on Promacta. I believe they were on a trial. I think she was having good counts, but then she started getting reticulin in her bone marrow, and they took her off of it. Later on, I believe they chose to try it again, just because they were tired of restricting her activities. I think she had similar improvement in her counts, but last I heard, they were suspecting that she was developing lupus (not that she was developing it because of the Promacta, necessarily, but, who knows, really?) I haven't seen her post anything for along time. Hopefully, that means really good news. I believe her username was "tacsmom".

Personally, my gut feeling is that forcing the body to overproduce anything, is not going to have a good outcome in the longterm. And, it does nothing to change the fact that the body is attacking itself. If you aren't on a trial, or have good insurance, it's going to get very expensive, too.

If she wants an oral medicine, have you ever considered homeopathy? It's like Mary Poppin's medicine-the delivery medium is a tiny, sugar pill, with the active ingredient sprayed on. Never met a kid who didn't like it. Of course, it is necessary to find a good homeopath who can figure out the best remedy for her, as it is patient-specific, so needs to be individualized for your daughter, by a professional. Homeopathy is what cured my daughter's ITP. She was 12 at diagnosis, in the 3k-10k range, most of the time. She had little to no positive responses to the various treatments, and nearly died twice after having an anaphylactic shock reaction--first, after her 1st dose of WinRho, and the second after her final dose of IVIG. It took a bit to figure out the best
homeopathic remedy for her, but, once she got the right one, she went from 11k to 411k in less than
4 days.

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Promacta 6 years 6 months ago #29208

  • SMorton1973
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I never really considered homeopathic treatment , but will most certainly look into it. I wonder if our insurance would cover any of it. I have not really looked over the whole website here , but I am sensing that there are a lot of people that are not really big fans of Promacta ? I think I am just frustrated. We have been doing the same thing for 10 years. Granted , the results are ok ( she can go anywhere from 1 month to almost 6 months without treatment ) but I think just like any parent I really want more answers and better treatments. The IVIG may last a good amount of time , but her anxiety level goes way up each time we have to treat. And the last 3 times it took about 3 people over an hour to even get the IV in. I always feel like the bad guy , because eventho she begs me to just take her home I cant. And the doctors not being able to tell us what brought this on when she was 5 is even worse. :(

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Promacta 6 years 6 months ago #29212

  • Ann
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We can't get Promacta in England but I'm a big fan of Nplate which works similarly. Many adults are fans of both drugs. I think I'd be more cautious with youngsters though as the long term effects aren't known but in the end you have to do what you have to do.

I wouldn't do splenectomy and I wouldn't do homeopathy but that's just me.
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Promacta 6 years 6 months ago #29222

  • SMorton1973
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Thank you Ann. I do have to ask...why not the homeopathy ? I am trying to get as much info in the next 30 days as possible since that is when her next appt and probably her next treatment will be. I always feel like I am caught between a rock and a hard place. I would give my child any organ , blood or whatever else from me if I could just to make her better. This is a way has become just part of life to us , but she is almost 16 and I already worry about how her future as an adult will be affected by this. Its one thing to have her in my house and being able to take care of her , and another for me to ever sleep again once she is out of the house. On top of that I worry about if she will even be able to get health insurance anywhere once she is on her own...

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Promacta 6 years 3 months ago #30671

  • tacmom
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This is an old topic so I apologize for not seeing this earlier. I don't get on here as much as I used to because my almost 15 year-old has been doing so well. She is still on Nplate and it has been the best thing for her. IVIG, Rituxan, & Prednisone do not bring up her counts so we really don't have too many choices. She does have another autoimmune disorder, but we're not definite it is Lupus. Her latest bloodwork is the best it has been since diagnosis. She had all the markers for Lupus (positive ANA, dsDNA) before she was even on any drugs so it has nothing to do with any treatment she has done. She did develop bone marrow reticulin, but it is a rare side effect and it goes away after stopping the drug. We took her off for four and a half months and tried other treatments. My daughter decided herself that she wanted to go back on the injections. She was given the option of going on the Promacta trial, but she is not that great about remembering to take her meds everyday so that wouldn't be a good choice for us. I am also pro-Nplate because it is an injection I give her once a week and it only takes a few minutes to mix and give then she is done for the week. The one big con you have to look into, considering your daughter's scar tissue, is that she will have to have bloodwork done weekly in the beginning until they find the right dose for her that brings her count to a stable level. This will happen on either Promacta or Nplate. Once the doctor has determined what dose works for her, she will be able to go to monthly blood draws. My daughter has a lot of scar tissue as well, but she has always used one arm and has the other arm (both have great veins) when the nurses have difficulty getting a needle in. I hope you have found something that your daughter is comfortable with!
Pauline-mom of Tiffany (age 14) and Caitlin (Chronic ITP, UCTD -age 13)

Diagnosed: 03/02/07
Current count (Feb 2011): 138
Current dose: 1 mcg/kg

Treatments tried: IVIG (doesnt work), Prednisone (sometimes works with high doses), Nplate (2 years on it-worked, but had to be taken off due to...

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Promacta 1 year 4 days ago #63511

  • sandrajames
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I agree. You should really consider homeopathy because it is far better in terms of safety compared to other methods. Anything that is natural is good. Sometimes it does not do the job and thus other methods can be used. When I had an episode of wrinkles all over my face, I felt extremely uncomfortable and got a botox for wrinkles which did the job. Most of the time homeopathy works.

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