Treatment choices Limited- Need Advice

Right now i'm in a descision making mode, but i feel boxed in and I'm running out of choices.

Before I get ahead of myself, let me give a brief treatment history. On 2nd January received Platelet transfusion, IVIG (1/3 of the dose required for my mass)3rd recieved Solumedrol. did Pred 80 mg's a day saw no lasting response went to 0k in 11 days. In the middle of Jan given an array of high dose steroids culminating with 3 day solumedrol (count 151 k) pulse and 8omgs of pred count 17 k at the beginning of February. first week Feb. did 4 day dex pulse with azathioprine at the end of that week count was 16k. got Solumedrol pulse again, still on aza no response from the platelets. Stopped Aza, got 1 cyclophosphamide (alkalyting agent) of 1 gram for the last 2 weeks of feb and 1st 2 weeks of march (4 grams total). Cyclophosphamide did nothing for the platelets. Duroing those 4 weeks got a Dex Pulse which lasted less than a week from 89k one friday to 3 k the next.

for the last month my count has hovered around 2-3k. The hematologist "strongly suggest" that I remove my spleen since I have such low numbers and I don't respond well to steroids.I am not interested and I expressed as much.

The rheumatologist wants me to take aza again. The catch is that I'm reading that taking Azathioprine after an alkalayting agent such as Cytoxan is contraindicated because of the significantly increased risks for lymphoma, hematological cancers and skin cancer. I work at a school and the concept of being immune suppressed in that environment well the prospect is also frightening ( e.g. i'm just recovering from a head cold I caught at work). The Dr actually went as far as to call my mother to ask her to encourage me to take the aza. My bf says i'm being unreasonable & stubborn and selfish for not taking it (what if i have an ICH i could have prevented by taking aza is his thought process) .Cellcept as another option is available only through application because there is a limited supply ordered specifically for the renal transplant patients.

Nplate, Promacta & rituxan are all prohibitivly priced out of my reach as i'm uninsured presently. I am now so frustrated that i'm honestly thinking of not treating. I have no active bleeding, no blood boils, only occasional trauma induced peticial spots (tight under garment or clothing) and I dont bruise easily. I feel fine, I'm going to work everyday.

So I guess these are my questions for the veteran ITP'ers (or anyone who's willing to share advice/information)

1. are my counts too low to employ wait and watch? (Why trouble it if it's not troubling you)
2. Am I being paranoid about the AZA? should I still consider it a viable option? take it now because of the platelet level?
3. Does gentech have a drug assistance progam where ITP patients can access rituxan? I only see for RA and Lymphoma patients. Has anyone gone through the process and how difficult was it?
4. Has anyone tried the promacta drug assistance program? How difficult is the process?

Lorie:

The decision to watch and wait is a tough one, and a decision that only you can make. Quite a few people have gone that route because they had no choice. If it were me, I would not go that route as long as I still had choices. My opinion.

I think I would try Imuran. I wouldn't let the risk of cancer scare me as much as you are. I don't think you are being selfish; I think you are rationalizing the options. However, your bf is right about worrying about cancer when you have another more immediate concern in front of you.

Genentech used to have a program for ITP patients, not sure if they still do. They paid for my round in 2004 when my insurance denied it. The problem is, they only pay for the drug itself and did not pay the doctors office bill for infusion time and pre-meds. If you want me to, I'll see if I can dig up the information.

I have no idea about your last question. Maybe someone else will answer that.

Google Promacta Cares. They offer financial assistance to those who qualify. Sorry you are going through so much.

Thank you so much for your advice.

Sandi If you could find that information i'd Be extremely grateful.

Thanks rere I'll start my googling now.

Lorie:

Here it is:

www.genentechaccesssolutions.com/rituxan/patient/index.jsp

Thanks A million Sandi!

lorie,
i can tell you i have not treated even one time, have been diagnosed for 10 years, counts never higher than 10. never spent a minute in the hospital. am i taking a chance? maybe. one thing i'm sure of, if i had treated these last 10 years, i would be in worse health from the side effects of treatment. i believe that. i'm not sure anyone here would argue against it. unless you think steroids does a body good..lol.

Wow Freckles, you have been truly blessed! I wish i could say the same my introduction to ITP put me in the hospital. I'm still in decision making mode and I appreciate your input.

Although I know I'm in the minority, I was on Imuran and it nearly killed me. Not the Imuran itself, but what it did to my immunity. I got a cold, which turned into pneumonia, which turned into a variety of chest infections, sepsis, etc. and I ended up in emergency surgery and barely survived.

I will not take Imuran again. I have a 2 year old and a 5 year old, and as it is now tapering off pred, I get every damn cold or cough that they get exposed to, repeated cases of pinkeye, etc. etc. etc.

Once I'm off the pred, I'll never take that again either. I know this limits my treatment options but the side effects, as others have noted, are MUCH MUCH worse.

I had Cytoxan, and when I went back to work i ended up with a head cold, and now i'm fighting a bad case of the runs. And I'm asking myself if this is what my life is going to be like a choice between platelets but always sick or no platelets ( literally 2-3K) but feel great?

Lorie - no. This will not be your life. There will probably be ups and downs, but most likely not a continuous cycle.

Also, never say never. I did that once and it bit me good.

This might be a naive statement and I'm not even close to an expert on healthcare. But I thought I heard that under Obama's new plan, if you're uninsured for 6 months, you can join the High-risk pool. Would that be something you would want to consider? It seems like that could open a few more treatment options for you.