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Please advise, facing tough decision 9 years 5 months ago #34361

  • Kjenkinsap
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First let me say I'm so grateful I finally found this site. My almost 17 year old son had a bruise that wasn't going away over 6 weeks ago and his doctor did bloodwork and we were immediately sent to ER for cat scans, etc. he has been dx with itp - first platelet count was 6000 and with prednisone, platelets and ivig he went up to 112000 in a few days. Since that d/c he has been admitted two more times - and getting 2-3x a week blood draws. His #s have ranged between 52000 and 1400. He is no longer on prednisone as his hematologist said his body wasn't responding. The ivig gives him incredibly bad headaches that cause him to lay in bed with the covers over his head. We are seeing a pediatric hematologist tomorrow. Any advice on treatments that worked for your teen. He's handling this as well as he can but all these pokes and hospital visits are wearing him down. He starts his senior year this fall and I'm hoping to help him get to a good place. Also a year ago he started with new onset epilepsy. If I could take this illness from him I would. Any advice from parents or people living with itp would be greatly appreciated. Kim

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Please advise, facing tough decision 9 years 5 months ago #34363

  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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Kim:

I would advise you to watch this video. It was presented by one of the top ITP specialists. It has some very good information and will familiarize you with ITP a bit. ITP is different for children than it is for adults, but your son is so close I would think he'd be more on the adult side. IVIG is such a temporary treatment that the time it takes to administer and the side effects may not be worth the trouble. There are other treatments to try. I hope the second hematologist handles this better. Let me know how it goes tomorrow.

fhs.mcmaster.ca/medicine/hematology/ITP-2010/player.html
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Please advise, facing tough decision 9 years 5 months ago #34365

  • tamar
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Hi Kim,

I would say don't rush into any decision. Hopefully the pediatric hematologist you are seeing tomorrow is familiar with ITP. The best advice I can give you is find a doctor that you trust and also learn all you can about ITP so that you can actively participate in the decision-making regarding treatments.

Tamar

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Please advise, facing tough decision 9 years 5 months ago #34366

  • Kjenkinsap
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Thanks so much, for some reason the video isn't available but I did get a lot of good information by researching the link. I've read so much in the last month my head is spinning. According to the majority of things I've read his illness will probably follow the path of an adult with itp. I have my fingers crossed for more information today and my binder with all of his lab work ready.

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Please advise, facing tough decision 9 years 5 months ago #34367

  • Kjenkinsap
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Thanks, the more I read the more frustrated I get but I do believe knowledge is power. Luckily our schools are closed for summer so he and I have more time to navigate all of this. I do have my binder full of information and his labs ready to go.

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Please advise, facing tough decision 9 years 5 months ago #34370

  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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Hmmm, that's odd. I don't have any problems bringing the video up.

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Please advise, facing tough decision 9 years 5 months ago #34371

  • Kjenkinsap
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I probably couldn't because I was on my iPad. My son was watching a movie on my laptop. I will check out when he's done. My 21 year old son is coming with us for another set of ears. I have my binder full and lists of questions. Thanks so much.

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Please advise, facing tough decision 9 years 5 months ago #34387

  • Kjenkinsap
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This doctor appointment was more informative. Instead of just offering us rituxan and splenectomy we were given lots of options. This doctor wants to do a bone marrow biopsy to determine if problem is in producing platelets or if spleen producing antibodies is problem. We have been told that ivig isn't successful for my son, he has had 3 attempts without success and Bp drops very low and he gets unbearable headache the next day. Steroids haven't worked either. Today he discussed whinro, m-plate and promecta. His office actually gave us materials on itp and a booklet with resources from pdsa - the doctor spent over 40 min with us. So I like this doctor better but now more to research. Anything doctor also talked about finding the treatment that will get my sons numbers up while not interfering more than necessary with his day to day life. Any suggestions? Anything anyone has tried? I plan to watch the video as soon as my son is done watching his movie.

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Please advise, facing tough decision 9 years 5 months ago #34388

  • Vdeutsch85
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I am an adult, but have tried rituxan, IVGs and steroids without success. After doing research and seeing an itp specialist, I have decided to wait at least one year before considering splenectomy. I am currently on Nplate. I really don't have any side effects and live a pretty normal life. My counts are usually in the mid 80's or 90's. The goal for Nplate is not to normalize counts but have them around 50, which is safe. My dose will probably need to be adjusted again. I have been in it since April 16th and have had no crashes, except when I did not receive it one week. ( it's a long story). The only negative is having to get it weekly.

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Please advise, facing tough decision 9 years 5 months ago #34392

  • Kjenkinsap
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Thanks for the information, I understand it's different for everyone but any knowledge is helpful. I'm keeping record of everything I read. Once a week is better than what he is doing currently.

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Please advise, facing tough decision 9 years 5 months ago #34393

  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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Kim:

It is generally assumed that most people with ITP have problems with production as well as destruction. That is fairly recent research (within the past few years). A bone marrow biopsy does not prove that production is adequate, but most doctors believe that it does.

pdsa.org/forum-sp-534/6-general-itp-discussion/11698-bone-marrow-biopsy-and-production-answers.html

bloodjournal.hematologylibrary.org/content/113/26/6511.full?sid=aaf83b48-93bb-4e7e-a5fe-204eaa0514a5

Despite normal or increased numbers of megakaryocytes observed in their bone marrows, platelet production appears to be inappropriately low in patients with chronic ITP. Levels of thrombopoietin in the circulation are only moderately elevated, if at all, likely due to uptake by platelets targeted for destruction in the RE system. In vitro studies reveal abnormal apoptosis and maturation of megakaryocytes which share antigenic targets with platelets such as GP IIb/IIIa. Indirect measurements of platelet production utilizing radiolabeled platelet survival measurements are consistent with an abbreviated response in the marrow compartment to the thrombocytopenia. Therapeutic intervention in ITP may increase the platelet count by increasing the numbers of platelets released into the circulation (corticosteroids), or increasing their circulating life span (splenectomy). The findings of inappropriately low levels of thrombopoietin and decreased platelet production by the bone marrow have afforded new opportunities for the therapy of chronic ITP. New agents mimicking the action of thrombopoietin at the megakaryocyte are capable of increasing platelet production and raising the platelet count.

www.ncbi.nlm.nih.gov/pmc/articles/PMC2789970/


All the biopsy will do is possibly rule out a few other medical disorders; it doesn't prove or disprove anything about ITP. It is usually only recommended if a person is over 60, prior to splenectomy, or if counts will not respond to any treatments. Your son did respond - he just didn't maintain the counts and that is normal with IVIG. The biopsy can give peace of mind to some people so it is good for that, but it is an invasive procedure that isn't always necessary. Usually, the blood smear will show enough to determine that a person has ITP. (Many of us have had the biopsy. Every single one of us have been told that production was adequate. That makes me wonder where the people are that have production problems. We know they exist due to research. I guess they coincidentally are the patients who chose not to have the biopsy.)

The doctor is right about finding a treatment that works and allows your son to have a normal life. That is the goal for most people and having a doctor that realizes that is great! It can take time to find that treatment since everyone responds differently. Rituxan has been successful for many people and can give remissions of a year or longer. Win-Rho can give a few weeks or months if a person is responsive. N-Plate and Promacta work for most but are maintenance treatments and the goal is not to maintain normal counts, only safe counts (50k). They all have their pros and cons.

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Please advise, facing tough decision 9 years 5 months ago #34409

  • Kjenkinsap
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Here we are again- Cam received ivig on Thursday - Friday his platelets went to 31. Today on Monday he is back to 18. So another round of ivig today with old doctor but clearly he cannot continue this type of treatment. So I'm reading up on whinro which is what doctor from our children's hospital recommends. This is so frustrating for my baby (and his momma). It helps to read other people's stories to see that this crazy illness is difficult for many people to get started on finding a treatment.

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Please advise, facing tough decision 9 years 5 months ago #34413

  • alisonp
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What happens when your son's count drops to its untreated level? I am asking because my nearly 15 year old seems to manage fine on a count between 10 and 20.Of course I prefer it when his count is in the 30s or more, but I am happy with less treatment.
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Please advise, facing tough decision 9 years 5 months ago #34414

  • Kjenkinsap
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I am all new to this. Right now the only thing is bruising He feels fine. We were surprised they dropped so quickly. Once he gets to low 20s he tends to drop to single digits within a day or so. Since this is new onset (about a month) they are trying to find what he will respond to. His dr goal is to get him above 50 because he plays baseball next month. This will be his senior year and he doesn't want to miss anything again. How long has your son been on treatment and what have you tried?

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Please advise, facing tough decision 9 years 5 months ago #34416

  • Sandi
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Kim:

IVIG will not get him above 50k so he can play baseball next month. It's very temporary and seems to not be worth the effort in his case. It's okay to make suggestions to the doctor or bring up other treatment options. I know you are new to this and probably spinning from all the information, but you're getting a pretty rough start here doing the same unsuccessful treatment. I can't imagine how frustrating that would be for both you and your son.

ITP is one disorder where you really have to advocate for yourself. Part of that is figuring out when the treatments are doing more harm than good. Most people do go through the line-up until they find one that suits them. This can take time and lots of patience.
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Please advise, facing tough decision 9 years 5 months ago #34417

  • alisonp
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:) Getting a good count for sports seems reasonable if you can!

Dougie has had ITP since he was 10 and a half . The first year he briefly tried a fortnight of steroids with little success. Then we went a couple of years without doing anything, then a try at IVIG which worked for a couple of weeks but gave him the headache from hell. In January he decided he wanted to try Rituximab, which got him to the magic 30 mark at least temporarily. I haven't taken him back for a count since March but we are both agreed that his count is back in the teens at the moment. He just gets on with life as usual - typical rebellious teenager, won't stop doing anything he doesn't want to stop, won't wear a bike helmet, won't be "sensible" about it. To be fair to him, he has never really had a problem despite his counts generally being 10-15. He does bruise pretty badly below 10, but thats not the end of the world.

Personally, I wouldn't try anything like rituximab until your son has had ITP for a while and you are sure it won't just disappear by itself, because it does sometimes - its a heavy duty drug for something that might just cure itself. In the meantime, the TPO drugs seems like a good option.

Good luck :)
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Please advise, facing tough decision 9 years 5 months ago #34419

  • Kjenkinsap
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Cams old dr had a standing order for ivig when under 20. We did bloodwork at his office because we get immediate results and the other lab wasn't set up yet. I called the pediatric hematologist and he said he wouldn't have given ivig because it's not working for cam and his veins have taken a beating. But he said not to worry about it today because hopefully it will keep him in safe zone until Friday.

He wants to do whinro Friday at our children's hospital but I don't like side effects. It scares me but so does all do the other treatment options. I do like his approach of wanting to not put cam through this weekly and getting his numbers up so he can play sports he wants.

The more I read and watch the more frustrated I get but I do realize that it is a disorder that reacts differently in different people. He gets blood drawn Wednesday but I told them no ivig again. Thanks for all support.

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Please advise, facing tough decision 9 years 5 months ago #34420

  • Kjenkinsap
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Thanks! I hope this disappears!!! Best of luck with your son as well!

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Please advise, facing tough decision 9 years 5 months ago #34421

  • alisonp
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Good luck with the winrho. Why is your son getting blood tests all the time anyway? 2-3 times a week seems way excessive

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Please advise, facing tough decision 9 years 5 months ago #34422

  • Kjenkinsap
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That's what the doctor ordered. I thought was too. The poor kids arms are looking awful and he isn't eating enough to maintain his weight. The new doctor called a little bit ago and he's taking over. He said to cancel Wednesday's blood draw because Cam has gone through too much. He said if Cam shows signs of bleeding bring him to the Children's hospital ER and call his cell and he will do whinro early. He did say Cam will have to have blood drawn Friday before treatment but that he has pediatric pts who get blood drawn every 6-12 months and that's his goal for Cam. So we are crossing our fingers.

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Please advise, facing tough decision 9 years 5 months ago #34423

  • Sandi
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Kim:

Some people have nasty side effects from Win-Rho and some have none. Hopefully, your son will be one of the ones who does not. I've had Win-Rho a few times and felt a bit flu-like, but I was still able to work that day. It's not used as often as it used to be since the black box warning came out a few years ago, but IVIG also recently got one and is still being used frequently. Just make sure they give him pre-meds (used to be Tylenol and Benedryl, I think) and monitor him. The standard protocol is to monitor for 8 hours afterwards. They used to just give it as a 5 minute IV push and send you on your way, but they are much more careful now.
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Please advise, facing tough decision 9 years 5 months ago #34427

  • tamar
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I'm one of those who had no side effects from WinRho. I had it every 3-6 months for several years (for a total of about 20 infusions).

There is a "regular" dose (50mcg/kg) and a "high" dose (75mcg/kg) but I actually convinced my doc after several years to do a WinRho taper and my last few doses were about 1/2 the regular dose....but still effective. In the beginning, the high dose did work better for me than the regular dose.
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Please advise, facing tough decision 9 years 5 months ago #34428

  • Kjenkinsap
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Thanks Sandi and Tamar. Every choice has bad side effects but my son has decided he would like to try this so we will. We like this dr's approach so we are going to cautiously trust him. This dr is a professor of hematology at a local college and has shown us research. He told us about the negative research as well so we are going to keep reading, stay informed and say lots of prayers. Thanks for the positive thoughts. I have needed some because I don't do well when I cannot fix things or control them. This is a fabulous cite and you are all amazingly strong people. Yep I'm gushing, it's been a long day in an uncomfortable chair. :silly:

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Please advise, facing tough decision 9 years 5 months ago #34429

  • Kjenkinsap
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In addition to the thanks for the input I wanted to tell you that they will be giving pre-meds. This hospital has its own ITP nurse who only works with ITP children and she explained process to me today and she included the pre-meds. :)

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Please advise, facing tough decision 9 years 5 months ago #34434

  • Sandi
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It's good that he is advocating research. A lot of doctors tell patients to stay away from the Internet. I never listened to that; research is key when dealing with a medical issue. You can trust www.bloodjournal.com for starters, and anything written by the PDSA medical advisors:

pdsa.org/about-us/our-medical-advisors.html

Sounds like things are getting on track now. Having a good doctor is important when dealing with ITP. I hope your son responds to Win-Rho - we will be interested to find out how it goes!

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Please advise, facing tough decision 9 years 5 months ago #34435

  • Sandi
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Tamar:

Did you have Win-Rho back when they did the IV push with no pre-meds? It's been so long I can't remember.

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Please advise, facing tough decision 9 years 5 months ago #34441

  • eklein
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I had Win-Rho with the 5 minute push and no pre-meds. I had very mild flu-like symptoms which did not interrupt my work day. I took tylenol. I had it about three times, it worked the first time but not after that.
Erica
And she was!
Diagnosed May 2005, lowest count 8K.
4/22/08: 43K (2nd Rituxan)
10/01/09: 246K, 1/8/10: 111K, 5/21/10: 233K
Latest count: 7/27/2015: 194K

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Please advise, facing tough decision 9 years 5 months ago #34442

  • Kjenkinsap
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Thanks. This website and your support has been a Godsend. I'm nervous for him on Friday but happy to be trying something that might work. He smiled this am when I told him he is done with twice a week blood draws. He was a preemie and had severe asthma when younger but grew out of it. Then started with seizures a year ago. Now this. This boy is my hero for how he is handling all this. I will let you know how he does. I've also given the pdsa handout/booklet the doctor gave us to my family members to read so they understand more. Thanks again and have a beautiful day!

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Please advise, facing tough decision 9 years 5 months ago #34447

  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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I didn't know you'd tried Win-Rho, Erica. You had the same experience as I did, except that it didn't work for me any of the five times I tried it. I have no idea why my hemo had me do it four weeks in a row when I had no response at all and counts were in single digits. If I knew then what I know now! I guess we are all a lot wiser.

Kim, I hope all goes well! It sounds like your son has been through a lot, so I hope this gets easier for him from now on (and you too!)

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Please advise, facing tough decision 9 years 4 months ago #34512

  • tamar
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Tamar:

Did you have Win-Rho back when they did the IV push with no pre-meds? It's been so long I can't remember.


Sandi, I always had a 30 minute drip, even though most other users in the discussion group were saying they were getting a 5 minute push (May 2002 was my first tx after the pred taper failed). On the other hand, I never had pre-meds. I asked about them before my first tx, and my doctor said we should try a round without to see if they were needed.

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