Doubts About Promacta and NPlate

Hey i just had a few doubts about Promacta. I am running out of options(predi, dapsone, danazol, dexa) and rituxi also hasnt responded so far (6 and a half weeks) so i was given the options of spleenectomy and IvIg. And i came across NPlate and Promacta on this forum. I read about the side effects of Promacata and Nplate and i am still deciding which is the lesser of the evils. When i asked my hameo he said that these are not standard recommended treatments and that he would not advice it. Basically i wanted to check as to what the cost of Nplate and Promacata are? A brief estimation also would help

Promacta keeps me in the mid-50k range. I've used it for a year now. Everything else I used prior to that had failed over the years. Cost depends on where you are located. It sounds like you are not in the USA? I'm in Ohio, US .... The 75mg/day dosage I've taken for most of the year costs $7,652.43 every month. It is expensive. My insurance covers all but a $60.00 co-pay.

Both of these drugs were developed specifically for ITP. They may not be "standard treatment" because Prednisone is dirt-cheap.

About splenectomy--I see you asked about this on another thread too--you can't count on it putting you into remission. My "remission" lasted a couple of months. I've not had any bad side effects from it, but I've not had any good side effects either! I'm cautioned to be careful about infections and infectious diseases, and I am--and I've not had any problems. (My splenectomy was in 2004.)

In your list of treatments, you don't mention WinRho. Have you tried it? Once you have a splenectomy, WinRho is probably not an option. I wish I'd known that and tried WinRho before my splenectomy.

How long have you been treated for ITP? What was your last platelet count?

Karen i havent tried WinRho yet, havent got up the option even. How does that work?

Also i have been treated for ITP for about 6 months now. My last count was at 6k. Over the past 2 months or so my counts have been below 10k but i have felt no different and continue to go about my normal life. There are some places where they had mentioned about H Pylori, should i get myself checked for that? cause when i asked my doc he said that we could do it but the likelyhood is very low. Also if i was to go in for a splenectomy i wanted to know if there was any lifestyle changes that you had to go through after the surgery? As in any diet changes and stuff like that other than being careful about infections?

I hope someone who has tried WinRho will speak up. I have read here that it has helped many people over the years--not a cure, but an effective treatment. I understand one needs to have both Rh-positive blood and a spleen to use WinRho (also called Anti-D).

I probably have a much more sedate life style than you (because of age and arthritis), but I haven't noted any lifestyle changes that I can attribute to not having a spleen. I walk, swim, do water exercises, hike, and bird-watch. My doctor makes certain I get my vaccines (but not live ones), and I do use hand sanitizer and wash my hands a lot--because both the prednisone and the absence of a spleen are supposed to make me more susceptible to infection--but I've not noticed that is the case.

If you have to have the surgery, I hope you can have the laproscopic variety. The other is apparently painful. THe only pain I had after the laproscopic surgery was in my shoulders and neck--they can't get all the carbon dioxide pumped out, and it rises and causes aches until it dissipates. Recovery is speedy.

Okay, here are the problems with splenectomy:

The main fear is sepsis. Once a person becomes septic, it can spread very quickly and can be fatal. Any fevers should be treated immediately. You don't just have to worry about getting sick from other people; sepsis can occur from a dog bite or digging in the dirt (staph). Pneumonia is also another serious factor. There are immunizations that protect you from pneumonia, but they don't protect against all strains.

There is current research that states that asplenic persons are more susceptible to blood clots. They have also found that the spleen aids in recovery from heart attacks.

I keep hearing the phrase "people can live just fine without a spleen", and most can. But when you have an autoimmune disorder, you are more prone to others and ITP may not be cured by the surgery. In those cases, some people end up on immunosuppressants anyway which make them even more immunosuppressed.

A splenectomy is something to consider carefully. Do your research. There are no special diets, but you must keep up with the recommended immunizations for the rest of your life, and always remain vigilant about fevers.

I'm telling you this because I've heard too many people ask "why didn't anyone ever tell me"? You seem to be asking.

This is the story of a man with ITP who had a splenectomy:

www.meningitisfoundationofamerica.org/templates/content-view/14/index.html