- Posts: 206
- Thank you received: 9
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!
Thank you for your reply.DeeDee Marie wrote: Dr. Bean,
This is impressive!! Your counts are finally coming around and in the normal range! So you did seek a second opinion?? I'm sure glad
things have changed for the better. Could you explain what the Anti lb/IX in your blood is? Is it showing you have infection in your blood that
needs to be resolved?? Really curious to know. Thanks and so happy you are doing better.
DeeDee
Please Log in or Create an account to join the conversation.
I am still taking Acyclovir that was an precaution of shingles.MelA wrote: You are still taking Acyclovir?
Are you doing acupuncture?
Please Log in or Create an account to join the conversation.
To increase the dose of Eltombopag was not my intention, since my doctors felt desperate after 5 times injection of ivig, and it seems to be crashed again.Hal9000 wrote: DrBean, glad you were able to increase that Eltrombopag dose from 25 mg to 50 mg!
Really made a big difference. It was just what was needed.
Please Log in or Create an account to join the conversation.
Please Log in or Create an account to join the conversation.
Please Log in or Create an account to join the conversation.
It's true. I am still taking Acyclovir at that dose for preventing shinglesMelA wrote: drbean - I can't believe you are still on Acyclovir, for shingles the dose is for 7-10 days - they have you taking it to prevent shingles? Didn't know the antiviral would/could prevent it
I find MedlinePlus a good place to look up drugs & supplements medlineplus.gov/druginformation.html
Acyclovir:
medlineplus.gov/druginfo/meds/a681045.html
Love what your private doctor said about a splenectomy
"He implied that splenectomy is not an option, since the no. of platelets must increase for a short period of time, after that it will be dropped when the function of the spleen are shared by other organs."
Most forget or don't think of the other places in the body that clean the blood just as the spleen cleans the blood.
I guess I was lucky when we lived in Hong Kong that the company gave us private insurance - however my Brit trained hematologist would panic any time my count came back real low and want to remove my spleen, which I always declined.
Please Log in or Create an account to join the conversation.
Please Log in or Create an account to join the conversation.
Please Log in or Create an account to join the conversation.
Please Log in or Create an account to join the conversation.
For what it is worth, I agree. The GPIb-IX antibody does make treatment difficult (this is row 2 in my treatments table). It often shows up in less complicated cases around here as a loss of steroid response and/or loss of IVIG response where one used to have such a response.drbean7218 wrote:
...
Anti lb/IX found in my platelet that confirmed my case of low platelets was caused by immune system disorder rather the issue of production of platelets. There are several antibodies can be detected by this test, and Anti lb/IX is much much difficult to handle, that's one of the reasons that my platelets count could not stable after 5 times injection of ivig and high dose of medicines.
I agree, Rituximab would be a waste of money here. For starters, because of the platelet production problem I described above.Ultimately, my private doctor suggested me to inject 500 mg of rituximab to make platelet count stable for 2-3 yrs, but the doctors from PWH advise me to take 800 mg of rituximab due to my weight. I think the cost of rituximab is too expensive and the result is unpredictable, also my platelet count was stable finally, so I didn't inject rituximab.
Please Log in or Create an account to join the conversation.
Please Log in or Create an account to join the conversation.
Please Log in or Create an account to join the conversation.
Please Log in or Create an account to join the conversation.
Please Log in or Create an account to join the conversation.
Please Log in or Create an account to join the conversation.
Please Log in or Create an account to join the conversation.
Melinda, I agree with the theory presented in this study from December 2016.MelA wrote: Hal what is your theory on those who do not have any antibodies showing up?
Please Log in or Create an account to join the conversation.
Please Log in or Create an account to join the conversation.
Please Log in or Create an account to join the conversation.
Please Log in or Create an account to join the conversation.
Please Log in or Create an account to join the conversation.
Please Log in or Create an account to join the conversation.
Please Log in or Create an account to join the conversation.
Please Log in or Create an account to join the conversation.
Please Log in or Create an account to join the conversation.
Thank you for your question.Lman wrote: Why do you use Acyclovir ? isn't that an antiviral drug?
btw, any major side effect of this combo?
Please Log in or Create an account to join the conversation.
I am not trying to attain a high platelet count or other thing.MelA wrote: I'm with mrsb.
But I don't know what you are trying to attain - what is your goal drbean?
Please Log in or Create an account to join the conversation.
Please Log in or Create an account to join the conversation.
Please Log in or Create an account to join the conversation.
Please Log in or Create an account to join the conversation.
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.