- Posts: 12436
- Thank you received: 2377
!!! 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!
Brand new ITP dianosis.
If any symptoms show up you don't like just call and ask for blood work sooner than Thursday. I wouldn't be waiting for the other shoe to drop - get out and enjoy the weather [if it's good], stop worrying, put it on the back burner unless something happens!
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
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.
- 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.
- Barb111
- Offline
- Posts: 129
- Thank you received: 6
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.
- 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
Hope your infusion goes well. Keep making those platelets.
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
I'm sure your doctor dislikes steroid side effects (we all do), but moving on quickly can cause withdrawal which can be worse. I hope this fast taper works well for you on both counts!
Please Log in or Create an account to join the conversation.
I do not understand a decrease in pred from 30 to 10 overnight - that is hard on the body. That's not a taper.
I wouldn't be happy with a doctor using me as a guinea pig - "My doc said the big initial drop was to see how my count reacted." But he did start you on treatment when your count wasn't that bad right?
I have learned over the years (ITP since 1989 and then add a bunch of other problems over the years) that it is my body and I do have a say in what is done to it and I can question a doctor's "orders" (just ask my neurologist & endocrinologist, both fantastic doctors, and the PCP that I fired non too quietly).
Good luck to you!
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
Thanks for all the feedback.
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
Here is my timeline so far.
October 8 hospitalized with a count of 5. Transfusion and IVIG every 6 hours for 3 days. Released on the 10th count at 20.
Started 60mg prednisone on 11th.
20th count up to 109
21st prednisone cut to 30mg
27th count 119
28th dropping prednisone to 10mg
Please Log in or Create an account to join the conversation.
I just hope all goes well for you - we give our experiences when asked, but we are all different in how we react to treatment and how our count reacts.
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
I'm just saying please be aware.
5 years I lost my husband very suddenly, treated for PTSD for 2 years as a result that.
Next I lost my mother 2 weeks after my ITP diagnosis.
Coping with all that was a breeze compared to steroid withdrawal symptoms.
I was off sick for nearly a year after my diagnosis initially because I was on high dose steroids and incapable of performing my job and then as a result of the withdrawal.
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.
- 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.
- rjsmyth
- Offline
- Posts: 61
- Thank you received: 8
Too fast - can be big trouble!
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
What should I expect with this treatment?
What are the most common side effects?
What do I need to ask the doctor next week before I start?
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
This is the package insert:
druginserts.com/lib/rx/meds/rituxan-1/
Just an FYI: There are other options. You don't need to try Rituxan. It's your decision.
Please Log in or Create an account to join the conversation.
- Barb111
- Offline
- Posts: 129
- Thank you received: 6
I did have a brief reaction, itchy and icrease in BP, during the 1st infusion, but I received meds and they stopped for 20 minutes and atarted again. Nothing after that.
I know you have to have a Hep screening beforehand.
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.
- Barb111
- Offline
- Posts: 129
- Thank you received: 6
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
Chances are you'll be okay, but this is not a drug to take lightly.
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.
- 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.
- rjsmyth
- Offline
- Posts: 61
- Thank you received: 8
Did absolutely nothing for me with zero side effects but when it works it can give you a good period of remission, even complete remission in some cases but bear in mind it can have a suppressive effect on your Immune System for 6-9 months after infusion.
In the UK we have to sign a consent form before they will administer the treatment.
If you are not experiencing bleeding episodes with your current levels and want to steer clear of steroids (effective and cheap but horrible long term) there are a number of other medications I would be trying first.
Please Log in or Create an account to join the conversation.
- Rob16
- Offline
- Posts: 1127
- Thank you received: 276
Please Log in or Create an account to join the conversation.
- CindyL
- Offline
- Posts: 1592
- Thank you received: 264
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
Since this is the next step I really need to get it done this year. I met my out of pocket max for the year and won't have to pay if I can get it scheduled soon.
Please Log in or Create an account to join the conversation.
- Barb111
- Offline
- Posts: 129
- Thank you received: 6
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.