finding it hard to be optimistic...

I am finding it more difficult to be optimistic. It's been 4 weeks since I had my last Rituximab/Dexamethasone infusion. My platelets are down to 12,000. They were at 20K last week and 16K the week before. My doctor has agreed to let me go as low as 10,000 before I have to talk about treatment. I've been reading about needing patience for this condition, but does this look like it is working to anyone? After this long, can I still be hopeful that it will get high without a different treatment? Granted, I am not at zero. If my platelets rise, they are only going up 4 - 5 thousand a week. I am skeptical of Rituxin being successful with me now. Shouldn't it be going up a little faster? I am just so tired of all this..... I want to be better.

Some on the board have experienced a slow climb that starts late - even a few months after the infusions. It is hard to say in those cases, is it the Rituxan or a coincidence? Could still happen! But yes, should probably think about a plan B in the meantime.
Erica

hello tlmons. I just wanted to chime in here to say that I can sooooo relate to your trouble with being optimistic. I think many of us here can! This is such a crazy disorder, kinda feels like a roller coaster. I've been diagnosed for a little over a year and still have that less than optimistic attitude. Prednisone did nothing at all for me, NPlate worked really, really well, but I couldn't handle the side effects. The first round of Rituxan worked for me for 7+ months but the 2nd round didn't do anything. IVIg worked for about 3 weeks and during that time I started Promacta. It's working well as far as I can tell. It's been a little over 8 weeks since my last Rituxan treatment so I'm assuming it's the Promacta that brought my counts all the way up to 174! Just found that out today. I'm excited! Wishing it was not because of drugs that they were that high though. But if that's the way it's gotta be, then so be it! In the last year my counts have only been in a "normal" range for about 2 weeks! My doctor has mentioned taking my spleen a couple of times in the past month, but I'm not ready for that just yet. You have many more choices for treatment before such a drastic surgery. In my opinion it is a drastic thing anyway.
Don't let your doctor try to guilt you into anything. It's your body, your choice. Stay strong!

I'm still hoping it will go up on its own. (don't we all) I'm going to research Promacta though. Thanks for that! There is another new treatment out as well that my hemotologist mentioned to me. I have an appt. at Mayo Clinic at the end of April. Want to hear what they say about a spleenectomy. I live in MN so its not hard to get a referral and just drive down there. I'm not bruising or getting nosebleeds so its all good so far. Maybe its going up.

Yes, check into Promacta and Nplate. Promacta is an oral drug, Nplate is an injection. Both were specifically created for ITP treatment.
I've been on Promacta for over a year now. Keeps me in the 50k range better than anything else I've tried over the past 8 years. Fewer side-effects for me as well. I opted to keep my spleen
.

Okay the ones on Promacta, I am going to ask a personal question....How old are you guys? My Dr says that I am too young to do Promacta. That there has not been enough research. I am 40 by the way. I really would like to keeep my spleen and have something work too. But mY dr wants to take out my spleen and if that does not work then use the other meds. All he wants to use at this point is steroids. He says everything else has not been researched and I could get something really bad down the line. How long have you all done Promacta?

Also if anyone else is reading this has anyone under the age of 40 done the Rituxan? He does not want me to do it either because he says it can cause cancer down the road.

I just need information!! Other than from a Dr that is stuck in splenectomy land...
Shannon

Shannon:

There are children doing Promacta and Rituxan. I was about 40 when I did Rituxan.

Steroids used long term can also contribute to cancer.

Splenectomy can lead to blood clotting problems..nothing is 100% safe. You need another doctor.

yea, what Sandi said!
I'm just a little bit over 40....lol. Ok, more than a "little" bit. Not 50 yet though! whew! I've had Rituxan and am currently on Promacta.

Sorry....I am a 'tad' over 40.
I was 56 when I started on Promacta, 57 now (for a couple more months anyway).

i am 34 and was on promacta for 4 weeks and 5days , i started at 2 then nothing the first week went up to 45 the second 57 the 3rd then back down to 5 the 4th week and still 5 5days later so i was taken off it as the doc said it must not be working.

Weirdjack , have you ever had a fall in platelets while on promacta? its just i fond it dissapointing that it stopped working as this was my highest counts since being diagnosed

tlmons, Hang in there!

jpb, I have not had as drastic a drop as you have had on Promacta. What dosage were you taking?
I started on 50mgs, but that didn't do it for me at the time. I'd have to look back at my notes, but it was like 5 or 6 weeks of only going from 4k to 13k or so on 50mg/day, when I was bumped up top the max dosage. I would have seen no change at all on the 25mg/day dosage.
I took the maximum 75mg/day dosage for a year. That kept me in the 50k range. After a year, I was able to reduce the dosage to 50mg/day and still stay around the 50k range.
My count usually hangs between 42k and 64k. So, I guess it does go up and down within a 20k range. But that is cool, anything over 30k is gravy to me.
.

Thanks, weirdjack.
My dr doesn't want me to start nplate or promacta unless getting my spleen out doesn't work. He said that it is too new, and that its only for chronic patients. and that its very expensive. So when am I considered chronic? It sounds like a plan for you though. I'm happy its working for you. I'm really anxious about getting my spleen out because its so final, but it seems like my best option at the moment. I've still got a couple of weeks for my count to go up though.:blink: