- Posts: 46
- Thank you received: 3
!!! DISCUSSION GROUP RULES !!!
1. You must be a registered website user in order to post and comment. Guests may read only.
2. Be kind and helpful, not rude and cynical.
3. Don't advertise or promote anything. You will be banned from the group.
4. Report problems to the moderators. THANK YOU!
Please advise, facing tough decision
- Kjenkinsap
- Topic Author
- Offline
Please Log in or Create an account to join the conversation.
- Sandi
- Offline
- Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
- Posts: 12436
- Thank you received: 2377
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
Please Log in or Create an account to join the conversation.
- tamar
- Offline
- Posts: 469
- Thank you received: 62
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
Please Log in or Create an account to join the conversation.
- Kjenkinsap
- Topic Author
- Offline
- Posts: 46
- Thank you received: 3
Please Log in or Create an account to join the conversation.
- Kjenkinsap
- Topic Author
- Offline
- Posts: 46
- Thank you received: 3
Please Log in or Create an account to join the conversation.
- Sandi
- Offline
- Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
- Posts: 12436
- Thank you received: 2377
Please Log in or Create an account to join the conversation.
- Kjenkinsap
- Topic Author
- Offline
- Posts: 46
- Thank you received: 3
Please Log in or Create an account to join the conversation.
- Kjenkinsap
- Topic Author
- Offline
- Posts: 46
- Thank you received: 3
Please Log in or Create an account to join the conversation.
- Vdeutsch85
- Offline
- Posts: 723
- Thank you received: 121
Please Log in or Create an account to join the conversation.
- Kjenkinsap
- Topic Author
- Offline
- Posts: 46
- Thank you received: 3
Please Log in or Create an account to join the conversation.
- Sandi
- Offline
- Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
- Posts: 12436
- Thank you received: 2377
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.
Please Log in or Create an account to join the conversation.
- Kjenkinsap
- Topic Author
- Offline
- Posts: 46
- Thank you received: 3
Please Log in or Create an account to join the conversation.
- alisonp
- Offline
- Posts: 1052
- Thank you received: 119
Please Log in or Create an account to join the conversation.
- Kjenkinsap
- Topic Author
- Offline
- Posts: 46
- Thank you received: 3
Please Log in or Create an account to join the conversation.
- Sandi
- Offline
- Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
- Posts: 12436
- Thank you received: 2377
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.
Please Log in or Create an account to join the conversation.
- alisonp
- Offline
- Posts: 1052
- Thank you received: 119
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
Please Log in or Create an account to join the conversation.
- Kjenkinsap
- Topic Author
- Offline
- Posts: 46
- Thank you received: 3
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.
Please Log in or Create an account to join the conversation.
- Kjenkinsap
- Topic Author
- Offline
- Posts: 46
- Thank you received: 3
Please Log in or Create an account to join the conversation.
- alisonp
- Offline
- Posts: 1052
- Thank you received: 119
Please Log in or Create an account to join the conversation.
- Kjenkinsap
- Topic Author
- Offline
- Posts: 46
- Thank you received: 3
Please Log in or Create an account to join the conversation.
- Sandi
- Offline
- Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
- Posts: 12436
- Thank you received: 2377
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.
Please Log in or Create an account to join the conversation.
- tamar
- Offline
- Posts: 469
- Thank you received: 62
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.
Please Log in or Create an account to join the conversation.
- Kjenkinsap
- Topic Author
- Offline
- Posts: 46
- Thank you received: 3
Please Log in or Create an account to join the conversation.
- Kjenkinsap
- Topic Author
- Offline
- Posts: 46
- Thank you received: 3
Please Log in or Create an account to join the conversation.
- Sandi
- Offline
- Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
- Posts: 12436
- Thank you received: 2377
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!
Please Log in or Create an account to join the conversation.
- Sandi
- Offline
- Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
- Posts: 12436
- Thank you received: 2377
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.
Please Log in or Create an account to join the conversation.
- eklein
- Offline
- Posts: 1353
- Thank you received: 167
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
Please Log in or Create an account to join the conversation.
- Kjenkinsap
- Topic Author
- Offline
- Posts: 46
- Thank you received: 3
Please Log in or Create an account to join the conversation.
- Sandi
- Offline
- Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
- Posts: 12436
- Thank you received: 2377
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!)
Please Log in or Create an account to join the conversation.
- tamar
- Offline
- Posts: 469
- Thank you received: 62
Sandi wrote: 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.
Please Log in or Create an account to join the conversation.
Stay Informed
IMPORTANT!
The Platelet Disorder Support Association does not provide medical advice or endorse any medication, vitamins or herbs. The information contained herein is not intended nor implied to be a substitute for professional medical advice and is provided for educational purposes only. Always seek the advice of your physician or other qualified healthcare provider before starting any new treatment, discontinuing an existing treatment and to discuss any questions you may have regarding your unique medical condition.
Platelet Disorder Support Association
8751 Brecksville Road, Suite 150, Cleveland, Ohio 44141
Phone: 1-87-PLATELET | 877-528-3538 (toll free) | or 440-746-9003
E-mail: pdsa@pdsa.org
© Copyright 1997 - 2024, Platelet Disorder Support Association. All rights reserved.
The Platelet Disorder Support Association is a 501(c)3 organization and donations are tax deductible to the fullest extent allowed by law.