Promacta- so far so good

This is an update to an earlier post. Promacta is working well for me and its very easy.

I started Promacta Feb 2011 at 25mg, along with 7.5mg prednisone that I had been on for 6mos. Plates were at 18K then dropped to 8K. I wasn't having any response with 25mg after 3 weeks so upped the dosage to 50mg. Platelets went up to 21K after 2 days, then:

March - 59K
- 37K
- 40K
- 78K
April - 25K
- 56K
- 49K
May - 41K
--50K
- 65K
June - 109K
July - 62K

I'm still on 50mg daily, taken at night. Still tapering Prednisone, down to around 5 mg now- feels so much better! I get blood work every 2-4 weeks, CBC and CMP. Hemo is monitoring liver, everything looking good. Haven't had any real side effects from the Promacta. Nice to have something simple so I can get on with my life!

My counts dropped to 25K first week in April. I also had a migraine headache then and was under a lot of stress.
Counts went up to 109K one weekend in June. I haven't seen numbers that high in 5 years. I think partly it was that I was staying in a motel, swimming, no responsibility, very relaxed. For me I've always thought that stress was at least a factor in my counts. Not completely the cause of ITP but a possible factor in the counts.

best wishes to all! ~p

Poseymint, Have you noticed any change in appetite while using Promacta? I'm curious if others have this effect. Actually, I'm not sure that is the right way to pose the question....seems to be more than simply appetite.
I have lost around 30 pounds since being on Promacta. No change in eating habits really. Some of it I would attribute to a change in appetite due to side effects, but I have a theory that may not be the only factor.
My theory is; Promacta is causing my body to generate far more than a normal amount of platelets. The energy to do that must come from somewhere. So while I take in the same energy I did before, I am expending more-than-usual energy. It's just a theory.
Expand that theory a little further and it could explain part of why we feel exhausted a lot.
Hey, it's just a theory, I don't even play a doctor on TV.
.

lol jack! It sounds like a good theory to me. But what do I know either?! I didn't notice the difference in appetite until I started the Cymbalta for TTS and Neuropathy. I constantly have nausea. It's kinda getting tiring!
Glad the Promacta is working for you poseymint. I agree with the stress thing. Who can explain to me exactly how to reduce strees?!!

At first I clearly felt a decreased interest in food. And also "something" that felt like the first trimester of pregnancy when the body is building the placenta and more blood. Now I don't want to put people off- its not like being pregnant! hah Very subtle experience that I wouldn't even call a side effect, and was not unpleasant. I felt calmer and could fall asleep easily. And it made me think it was the body working.

But I was still on Prednisone so my experience was different. Promacta took the edge off the Prednisone anxiety and munchies. Now that I'm down to 6.5-5mg prednisone, I have lost some weight without trying. 8 pounds in 2 mos. great! because I packed on 30 pounds taking prednisone for over a year.

I have a slight dry mouth in the mornings which has lessened over time. No hoarsness. Have had some migraine headaches which is normal for me. They were once a month, now less often. Prednisone was making my life impossible, so compared to that these side effects are nothing.

So yes! WJ. I like your theory, very observant and valid, makes sense to me! I did mention my experience of Promacta, sleepiness and similar to pregnancy to my hemo- no comment, just the look and silence.

I am not being treated at alll yet

I have been in remission from 09 till July 2011

I am presently at 38

Seeing a new Onocologist/Hemotologist on Mon Aug 22nd

Do not know what will be offered to me but is the criteria you have to be at 10 or lower to begin any treatment?

My present doctor that is her criteria , she stated no doctor will treat unless you are under 20 at least.....

If the doctor's expertise is with blood cancers and not ITP they are more likely to want to treat at higher counts. Treating at under 20 sounds like a good plan. See what your new doctor says and if he wants to treat at 38 then have an idea of whether you're going to refuse or not. For what it's worth I'd gently refuse and suggest we wait to see what happens.