Someone like me

So, my name is Emma and I was diagnosed in August. So far I have done IVIG, retuxan, I have had a splenectomy, I receive weekly Nplate injections and I stay on at least 40mg of prednisone daily. NOTHING WORKS. Well.. Let me rephrase that, nothing works long term. My platelets will go from 500,000 to 12,000 in a week.

I am trying to find someone who has a story similar to myself, my platelets are being produced at a normal rate, everything's normal on that end. The problem lies in that my body is destroying them and we are not sure why, if anyone has some input into this I would be very greatful. I'm not asking for normal numbers I'm just asking for stable numbers.

Hi Emma,

You have had a lot of treatments since your diagnose, and sometimes I feel this can confuse your body. There have been quite a few other ITPer's who have gone through the same thing. I have read their stories on this forum through the Years. How low do your platelets go when they fall and you don't have any treatment?

Amber is on the forum and I believe she has gone through the same thing. Hopefully some of the others will reply back. Your body probably needs a little rest from all the treatments for a while. And sometimes you don't know if a treatment is working when you start on another right away.

Dee Dee

Emma:

How long have you been on N-Plate? It can take time to get stable with it.

Most people with ITP have production problems as well as destruction. Currently, there is no way to test to find out. Since you are having a difficult time with treatments working, I'd be willing to bet that you have both destruction and production problems.

I know how you feel been in the same boat.
Last count was 63k that was in January, trying to wait until I get insurance to go back to doctor. Last year was hospitalized 3 time last one had spleen removed topped out at 360k just to drop back down in the 20's. One month stayed around 1k with cbc daily with platelets.
Right now on Promacta 75mg.
We are trying to get all the chemicals out of my body from last year to see how my body handles things and hope to get off Promacta also. Don't want any more drugs and or chemicals in my body. I know my body really well now and can tell when counts are down or if I need help.
I feel for everyone that has to deal with ITP because for me it is a daily up hill battle.

Emma,

Your story does sound similar to mine. I was diagnosed dec 2012. By march of 2013, I had tried all of the treatments you listed besides splenectomy. I refused to do it and my local hema said I was out of options. I basically was in a depression and had given up until my dad persuaded me to go to a specialist at Cleveland clinic 4 hours away. He changed my life. He actually analyzed my data and gave me options. He thought I did respond to Nplate, ( I had been on and off of it in jan) but the dose was not high enough and my counts would go up and then the local hema would not give me the dose and ten days later I would be at 4. It was a big mess, but I needed a 2nd opinion to figure it out. The specialist basically said let's up your Nplate dose and keep you on it every week according to Amgen guidelines. Also use the dosing guide to give me right amount of meds. I know it sounds ridiculous but that was the issue. The moral is my advice is to go to a specialist.

I did well on Nplate when done correctly. In October, the specialist recommended I try Promacta thinking that I wouldn't need weekly doctor appointments and I would have more consistent counts ( the theory was if I had consistent levels of meds in my body I would have consistent counts)Also, I was very achy on Nplate. Well I've been on it since then with counts usually ranging from 50-77. I got sick and dropped to 19,000 but rebounded within a week. I have no side effects.

I'm sorry to hear of your hardships with itp. I do know it does get easier emotionally and pdsa is a great organization. There are always people to vent to and help you.