Really confused and full of questions ITP 3 mos.

Hello!
Anyone out there?
I'm a 49 year old newly diagnosed ITP guy.
Trying to connect with others who can shed some light on what I have been experiencing.
My name is Rene, so I if it can join other members, that would be wonderful.

Yep, we're here and at your service! Hello Rene!

Hi Rene,
I sent a private message, but here you are...I found your thread! I too am 3 months in and know that full of questions feeling. Have you started treatment?
This is the best resource I have found...
Welcome
Ferv

Welcome Rene..Hopefully you can access the link below it is for nurses who know nothing about ITP but is written in a fairly none technical sort of way. I am a nurse and found it very useful when I was first diagnosed a year ago

If you cannot access it message me your e mail address and I will try send it as an attachment
Anne

www.ebmt.org/Contents/Resources/Library/Resourcesfornurses/Documents/ITP%20Handbook.PDF

Let us know if you have any particular questions. People here are quite helpful and informed.

Hello Sandi,
Thanks for welcoming me to the community and for offering your services. I am so new to ITP and it's been a very stressful time in my life. I should say draining time in my life. It's comforting to know that there are others that can relate to what I'm going through. I've read some of your threads and boy, you have plenty if knowledge. So that you can learn a little about me and my treatments, I have only taken prednisone for about a month and Promacta for two months. Next step is my Doctor telling me I need a splenectomy. I went to get a second opinion at another Doctor and she recommended Rituximab. I was scared of that treatment and now I'm wondering if I will have to take Promacta for the rest of my life. Side effects are horrible but it's a double edge sword situation. It's quite a dilemma I tell ya and I know you can relate.

Thank you very much for saying that. I have many many questions starting with this; I am taking Promacta 50mgs every other day. My Doctor seems to be pushing for spleenectomy.
I don't want to go for rituximab but then again, I don't know what else to do. Any suggestions based on your experience???

Hello Fervenz,
Thanks for your quick response.
It's a relief to know someone who is experiencing what I am going through. Three months just like me. These three months have been hard and a life changing experience. I am currently not working because the prednisone messed me up and had me tired all the time. I am no longer taking steroids but am on Promacta 50mgs every other day. Doctor suggests having my spleen taken out but I think it's too soon. On the other hand, I read stories on how that procedure does not always work. Another hemotologist suggested I do rituxumab. I am even more scared to do that one. What medications are you on? And what have you experienced?

Hello Sandi and thanks for your quick reply. I will be getting in touch with you more often for sure.

Rene
I have been going through this since january. It had rituxan but it didnt work for me. I am on promacta also. It seems to be working. Is it not working for you? What are your counts?
Emily

Hello Emily,
Well, Promacta is working for me. As soon as I take it, my count goes up. It's gone up to 380,000 when I was taking them everyday. Doctor told me to stop taking them for two weeks to see by how much the count dropped. First week they dropped but not too much so they kept me off for one more week. Count dropped too much so I'm back to taking 50mgs every other day. Last count was 74,000 and that was three weeks ago. I have a doctors appointment this week so I will find out what the current number is. Pretty much doctor says to keep taking Promacta but eventually he is suggesting to take my spleen out. I don't know whether to stay on Promacta until God knows when. I don't want the splenectomy. What is your doctor recommending for you? Are you staying on Promacta and until when?
Are you in the U.S.?

Thank you for the information Anne, I will check it out for sure. Can I ask, what medications are you taking? What treatments have you had? I can only imagine how difficult a journey it has been for you and am hoping things will get better for you too.

currently on the fostamatinib trial and 5mg a day of prednisolone.Have tried Azathioprin & mycophenolate too. I am NOT parting with my spleen

Rene
I am 51 and live in arizona. I will keep using promacta until it no longer works. I see no reason to try any other treatments unless this fails. They are still working on the correct dose for me too. It took me six months to get off prednisone and i do not want to go back on it. It seems ridiculous to me to talk about spleen removal if promacta is working. There is no guarantee spleen removal will stop your ITP and no guarantee that promacta will work after spleen removal. You need to make your own choices and understand the risks of each treatment.
Emily

Rene,
There seems to be a consensus among less knowledgeable MDs that splenectomy "cures" ITP. In the past year, no less than six MDs of various specialties encouraged me toward splenectomy so that I would be "cured". When I refused each one's recommendation, I felt their disapproval keenly. They think I'm the unenlightened one.

Don't allow yourself to be dictated to. Your say on the matter is all-important. Surgery is not your next step unless it's your own choice to risk.

Hi Rene,
It's a **** 4 star piece of work this ITP..but I'm new too... the others with experience will tell you hang in there, you DO get used to it in a manner of speaking!!!
I'm on Prednosilone (uk) same steroids as you really. I resisted starting and now am trying to taper...and not feeling good at all, stuck on 40mg.However Promacta seems to be working well for you, I think they just try to keep you safe until you stabilise and that seems to happen pretty randomly but it seems most do stabilise/go into remission, for a while. That can be a short while or years from what I've read.
Once I'm off the steroids, I won't be rushing for more, they have raised my count, 60 last check. but I feel rubbish and hate to think what it's doing to my system.
So I guess this is a time to get to know how ITP affects us and which drugs work for us. Signs that we should recognise and respond to, and signs we can relax about.
As for splenectomy:
I will not be listening to talk about surgery. Read more posts before that option. It's not favoured here by ITP specialists at all.
If you listen to all these wise folk they take charge and they know their stuff, that's my goal
Wishing you well, let me know how you go
You are not alone
Ferv

Rene:

Let me point out where you are lucky. I know you don't feel that way right now. Most people with ITP end up going through months, sometimes up to a year, of failed treatments before they find the right one. After observing this Forum for many years, I can tell you that after steroids, Rituxan, many side effects, etc....they end up on N-Plate or Promacta and that is when they feel as if they got their life back. Your doctor started Promacta fairly early in your diagnosis; many doctors only try that after other treatments have failed. It has a pretty high success rate and fewer side effects than most other treatments.

Promacta has been causing remissions. That was an unexpected perk of this drug. There is no reason to believe that you would be on this drug for life. There is also no reason to believe that 'eventually' you will need a splenectomy. That is a treatment that is becoming less popular because it does not always work and there are more problems associated with it than many doctors even know.

Tomás José González-López, MD, PhD, of the department of hematology at the Hospital Universitario de Burgos in Spain, and colleagues evaluated data from 260 adults (mean age, 62 years) with primary immune thrombocytopenia (ITP). The cohort included 165 women and 95 men treated with eltrombopag (Promacta, GlaxoSmithKline) for an average of 24 months after ITP diagnosis.

Researchers reported complete remissions in 201 patients; of these patients, 80 discontinued treatment with eltrombopag.

Thirty-three patients discontinued eltrombopag because they demonstrated persistent response even with a reduction in dose. Twenty-nine patients discontinued treatment because they achieved a platelet count >400/L x 109/L. Other reasons for discontinuation were patient response (n=5), elevated aspartate aminotransferase levels (n=3), diarrhea (n=3) and thrombosis (n=3). Four patients discontinued due to other reasons.

Forty-nine patients were valuable after eltrombopag discontinuation. At a mean follow-up of 9 months post-discontinuation, 26 (mean age, 59 years; 15 female) of these patients achieved a sustained response with no additional ITP therapy. In this subset, the average time since ITP diagnosis was 46.5 months, and four of the 26 had ITP for less than 1 year. These patients received a mean of four previous treatment lines, and 42% were splenectomized.

“No predictive factors of sustained response after eltrombopag withdrawal were identified,” the researchers wrote. “Platelet response following eltrombopag cessation may be sustained in an important percentage of adult primary ITP patients who achieved complete response with eltrombopag. However, reliable markers for predicting which patients will have this response are needed.”

www.healio.com/hematology-oncology/hematology/news/online/%7B15bcd4ec-a427-4fcc-843c-fb638d301006%7D/discontinuation-of-eltrombopag-deemed-safe-after-complete-remission-of-primary-itp

When on Promacta, the dose should be adjusted to keep counts around 50k. You do not need normal counts for daily life. 50k is a safe count. It's possible that 25 mg's would keep you in that range, but it's hard to say because your doctor takes you off of it when counts go up instead of just dropping the dose to see where you settle in. Maybe a lower dose would help some of the side effects. What are they, by the way? Promacta seems to have fewer side effects than most of the other treatments and sometimes, the side effects go away the longer you are on the drug.