ITP counts/ Promacta

I haven't reported my platelet count in over a year. I've been on Promacta for almost 3 years and my platelet count was at 135,000 last month. That was actually a little down from last month. (I was at 165,000) I have no side effects, liver is great and I make sure that the hematologist gives me the "whole story" when she reads my CBC and liver test. I still have tests every month and see the hematologist every 3 months. It's the most wonderful feeling to not even remember sometimes that I have ITP.

I just read the e-news from PDSA and was thrilled to read about the new development in ITP medication in Germany. I really hope that it becomes approved in the US one day soon.

What is the new medication in Germany? Can you tell us about it?

Just went and found the March 2012 e-News - excerpt about the new drug below ... will go on to the website mentioned when I get a chance ...

SUPPREMOL ANNOUNCES POSITIVE RESULTS FOR NEW ITP TREATMENT
SuppreMol GmbH, a German company specializing in treatments for autoimmune diseases, announced the results of their phase Ib/IIa double-blind, placebo-controlled trial of SM101, a new and different treatment for ITP. The 36 patients tested showed a dose-dependent response to the treatment with those in the highest dosage group continuing to respond for at least three months after the medication was discontinued. Because of these positive results SuppreMol will continue to develop and test this treatment in ITP and other B-cell driven diseases. SM101 works differently from other ITP treatments on the market. It blocks the action of immune complexes, thereby reducing the autoimmune response and associated inflammation.

See www.suppremol.com for more information.

"SuppreMol releases positive interim Phase Ib/IIa results on SM101 in Primary Immune Thrombocytopenia (ITP) trials." PharmaLive February 14, 2012. pharmalive.com/News/index.cfm?articleid=825929&categoryid=40

Do you know.. that drug was talked about when I was first diagnosed in 2006 and still it doesn't seem to have got very far. These drugs take so long to get anywhere, it could be quite depressing if we'd let it be.

In a way that could be a good thing. I'd want it nice and tested before passing it out to people.

Sandi - I agree. While I believe it's our body and if we want to take a risk with a new drug we should be allowed to, I also believe only 10% of drugs make it successfully through the clinical trials pipeline. They get weeded out because they are toxic, or don't even work. It can be frustrating when you see stories of potential new treatments and it takes forever to get anywhere but with that kind of failure rate I am glad the process is there.

Having had some pretty nasty problems from drugs that are commonly used, I'd hate to think of what could happen with drugs that are not tested thoroughly. I don't even take antibiotics anymore without caution. I used to think they were harmless. Hah!

My point with this drug is that although it's been ages it still hasn't really got very far in the process. There are another couple of drugs that don't seem to be moving at all. Of course we need the drugs to be tested thoroughly but the time that takes isn't really indicative of the amount of testing that's been done.

True enough. I guess some just go stale for some reason.