- Posts: 224
- Thank you received: 18
!!! 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!
Post Spleen Journey
- D.Mann
- Topic Author
- Offline
- Diagnosed October 2016 Steroids, IVIG, Rituxin, Promacta, Spleen removed, Rituxin again. Currently weaning off Promacta and Prednisone.
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.
- D.Mann
- Topic Author
- Offline
- Diagnosed October 2016 Steroids, IVIG, Rituxin, Promacta, Spleen removed, Rituxin again. Currently weaning off Promacta and Prednisone.
- Posts: 224
- Thank you received: 18
Please Log in or Create an account to join the conversation.
- tj1989
- Offline
- Posts: 32
- Thank you received: 8
Please Log in or Create an account to join the conversation.
- apantoj1
- Offline
- Posts: 89
- Thank you received: 12
Allie2
Allie2
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.
- apantoj1
- Offline
- Posts: 89
- Thank you received: 12
Allie2
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.
- D.Mann
- Topic Author
- Offline
- Diagnosed October 2016 Steroids, IVIG, Rituxin, Promacta, Spleen removed, Rituxin again. Currently weaning off Promacta and Prednisone.
- Posts: 224
- Thank you received: 18
Please Log in or Create an account to join the conversation.
- Hal9000
- Offline
- Give me all your platelets and nobody gets hurt
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.
- mrsb04
- Offline
- ITP since 2014. Retired nurse. My belief is empower patients to be involved as much as possible in their care. Read, read, read & ALWAYS question medics about the evidence base they use.
- Posts: 2166
- Thank you received: 628
Please Log in or Create an account to join the conversation.
- apantoj1
- Offline
- Posts: 89
- Thank you received: 12
Allie2
Please Log in or Create an account to join the conversation.
- Cindy1
- Offline
- For 7 months, platelets crashed (as low as 1,000) every 10 days between IVIG treatments. I got cured 10/2017 after taking parasite destroying medicine and Rife US tx.
- Posts: 295
- Thank you received: 30
I am sad and sorry that you have to go through all this! 7,000 platelets and be admitted. I hope it is a short admission and that you are back to feeling better and work again soon. My heart and good thoughts go out to you.
Be Well,
Cindy
Please Log in or Create an account to join the conversation.
- D.Mann
- Topic Author
- Offline
- Diagnosed October 2016 Steroids, IVIG, Rituxin, Promacta, Spleen removed, Rituxin again. Currently weaning off Promacta and Prednisone.
- Posts: 224
- Thank you received: 18
Monday count 5, IVIG in the office and continue 50mg Promcta
Wednesday count 7, IVIG in office and up Promcta to 75, admitted to hospital due to hemoglobin 1 point from transfusion level and still bleeding.
Thursday count 6 hemoglobin up 0.5. IVIG, IV steroids twice, 75mg Promcta. I also received IV of something that will coat my GI tract to help stop the bleeding.
Friday if no bump in the count Rituxin 1 of 4 and IV steroids.
Hemo said he was going to throw the kitchen sink at me if needed to get the count up. Will probably try NPlate after I get out of the hospital for maintenance.
Please Log in or Create an account to join the conversation.
- EmilyK
- Offline
- Diagnosed jan 2015 at age 50 with 13,000 platelets.
- Posts: 454
- Thank you received: 67
Please Log in or Create an account to join the conversation.
- apantoj1
- Offline
- Posts: 89
- Thank you received: 12
Allie2
Please Log in or Create an account to join the conversation.
- momto3boys
- Offline
- Posts: 508
- Thank you received: 140
D.Mann wrote: Well my Hemo has named his special ITP patient.
Monday count 5, IVIG in the office and continue 50mg Promcta
Wednesday count 7, IVIG in office and up Promcta to 75, admitted to hospital due to hemoglobin 1 point from transfusion level and still bleeding.
Thursday count 6 hemoglobin up 0.5. IVIG, IV steroids twice, 75mg Promcta. I also received IV of something that will coat my GI tract to help stop the bleeding.
Friday if no bump in the count Rituxin 1 of 4 and IV steroids.
Hemo said he was going to throw the kitchen sink at me if needed to get the count up. Will probably try NPlate after I get out of the hospital for maintenance.
I'm so sorry that you are having such a difficult time of it. Does your doctor hold out any hope of the splenectomy having any positive effect on your counts at this point? Or is he just considering it a failure and moving forward with other treatments?
Hang in there! Thanks for keeping us all in the loop.
Please Log in or Create an account to join the conversation.
- D.Mann
- Topic Author
- Offline
- Diagnosed October 2016 Steroids, IVIG, Rituxin, Promacta, Spleen removed, Rituxin again. Currently weaning off Promacta and Prednisone.
- Posts: 224
- Thank you received: 18
Platelets have started increasing today. 4am blood draw was 17, up 10k finally and bleeding seems to have stopped or at least slowed significantly. Still will start the Rituxin today but probably no more IVIG unless the bleeding resumes.
Thank you all for your thoughts and prayers. I hope that the updates help someone get through a difficult treatment search.
Hal9000 how are you going to incorporate this treatment barrage into your spreadsheet. I may need my own column or tab. :lol: :lol:
Please Log in or Create an account to join the conversation.
- Hal9000
- Offline
- Give me all your platelets and nobody gets hurt
I can't recall ever reading an old post about someone saying that they are currently treating for a clot...
Please Log in or Create an account to join the conversation.
- D.Mann
- Topic Author
- Offline
- Diagnosed October 2016 Steroids, IVIG, Rituxin, Promacta, Spleen removed, Rituxin again. Currently weaning off Promacta and Prednisone.
- Posts: 224
- Thank you received: 18
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.
- Cindy1
- Offline
- For 7 months, platelets crashed (as low as 1,000) every 10 days between IVIG treatments. I got cured 10/2017 after taking parasite destroying medicine and Rife US tx.
- Posts: 295
- Thank you received: 30
I am glad things are improving!
I too am thinking about you and sending prayers for you to be past the clot and low platelet issues.
Be Well,
Cindy
Please Log in or Create an account to join the conversation.
- Hal9000
- Offline
- Give me all your platelets and nobody gets hurt
Sandi, perhaps this post by 'aclow' is who you were thinking of?
Please Log in or Create an account to join the conversation.
- D.Mann
- Topic Author
- Offline
- Diagnosed October 2016 Steroids, IVIG, Rituxin, Promacta, Spleen removed, Rituxin again. Currently weaning off Promacta and Prednisone.
- Posts: 224
- Thank you received: 18
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.
- D.Mann
- Topic Author
- Offline
- Diagnosed October 2016 Steroids, IVIG, Rituxin, Promacta, Spleen removed, Rituxin again. Currently weaning off Promacta and Prednisone.
- Posts: 224
- Thank you received: 18
Please Log in or Create an account to join the conversation.
- momto3boys
- Offline
- Posts: 508
- Thank you received: 140
D.Mann wrote: My count was up to 27K Saturday and I am finally home. No bleeding now and full of IVIG, Steroids, and Rituxin. The last 2 days my count increased 22K after 4 days of no increase.
Congratulations on breaking out of hospital jail. Here's hoping that you are onwards and upwards with the counts (but no clots!) moving forward. Good news!
Please Log in or Create an account to join the conversation.
- dneaphen@comcast.net
- Offline
- Posts: 17
- Thank you received: 2
Please Log in or Create an account to join the conversation.
- dneaphen@comcast.net
- Offline
- Posts: 17
- Thank you received: 2
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.