Counts with Promacta

Slammed,
I like your post, my hema was the opposite.....not worried at all. Her idea is that you have it checked monthly and don't worry about it.

dmblank,

You are absolutely right. We need to have that leap of faith. I do get my liver check every month, at the beginning, my liver enzymes were highly elevated, however, after the second month, it's returned back to normal or my dr would had forced me to stop. I hope to be at the point in my life that ITP is at the back of my mind instead of feeling "slammed" each time I get my CBC results.

I agree with you guys about not knowing long-term effects and how scary that can be. When I first used Rituxan, it was fairly new also, especially for ITP. It was first used in 1998 and I think I had it in 2002, but as I said, it was new for ITP. I took the risk because the other options had been tried and were not all that appealing either. It wasn't until much later that the warning about Hep B and PML came out. Would I have still tried it? More than likely....many people here still do.

I've had to use Imuran lately which also has liver warnings. I had to have that checked monthly also. I felt as long as I had the blood work and kept on top of it, I'd be fine. The liver warnings were the last thing I was worried about with Imuran. With most of those types of drugs, once you stop the med, the liver returns to normal.

If there are any better long-term solutions, please tell me. I've been on a bit of a tirade lately about drugs and side effects and the damage they do, so I am with you on this. I know I'm not struggling with platelets at the moment, but I am struggling with serious autoimmune issues, so the drugs are similar. All of them are a gamble as far as I can tell....been at this for 15 years. I have yet to find any solutions; it's just jumping from one thing to another. But if you do find something that works and you can live with it, grab it for the moment because those are hard to find.

Artificial platelets....now that's a new and interesting idea!

Sandi,

You are so wise. I'm thinking risk vs. reward. As you said with those other drugs, they have black box warnings and Promacta does not as of yet. To me I would rather be on the drug with safe counts and risk the effects. Unfortunately there are risks with all treatments. The most important thing to me currently is getting more of my normal life back and I think Promacta could be what can help me do that even if it is temporarily.

There are new clinical trials going on currently and also that one study said that there is up to a 20% chance of remission after two years and the hope of spontaneous remission.

Slammed,

I now know why that is your screen name on here. Wishing you luck with your counts this week!

As for my doctor, his only concern is monthly liver checks. So far mine have been fine. He's seen people on it for 3-4 years with no concerns so far.

Four years sounds like a pretty good track record to me. As far as I can see, all of the treatments simply buy time. When you find one that works, you use it until something comes up and you can't use it any more.

Most of you probably were not here when Promacta and N-Plate were first discussed here (about 6-7 years ago). This was before they were even available. The thinking then was that ITP only involved destruction. The fact that it affects production is fairly new in ITPLand and sure surprised all of us. I remember the day I read the first article about that on bloodjournal.com. People were saying that their doctors were telling them they'd never use it on an ITP patient because it wouldn't work since they believed they didn't have production problems. Ha.

As it turns out, the TPO's have really changed the lives of many people who were unresponsive to anything else. Treatments for ITP have come such a long way in the past 10 years. Remissions during TPO treatments are happening sporadically which is also a plus.

Vdeutsch85 wrote: Slammed,

I now know why that is your screen name on here. Wishing you luck with your counts this week!

Slammed is one of my favorite books...and it's also how I feel sometimes with ITP...so I thought it's the perfect screen name for me!

Sandi,

I have read some articles on artificial platelets and thought it was awesome.

www.livescience.com/27291-artificial-platelets-blood-clotting.html

Awesome and scary at the same time!

Just got my results back, liver functions are good, count is at 63k. So, I think, but not confident yet, I'm finally starting to stabilize at around 60's. I think this is pretty awesome on 12.5mg of Promacta.

That IS good news! I just got my results too, and I'm still climbing at 73K after returning to the 50 mg dose, with no liver problems (fingers crossed!). I'm glad you can do this on 12.5 mg, despite your earlier difficulties with nausea. Hopefully, you are passed all that!

luca wrote: That IS good news! I just got my results too, and I'm still climbing at 73K after returning to the 50 mg dose, with no liver problems (fingers crossed!). I'm glad you can do this on 12.5 mg, despite your earlier difficulties with nausea. Hopefully, you are passed all that!

Luca,

For the most part, I don't feel nauseous anymore. But sometimes, I still get it. It's definitely something I gotten used to and can live with, the trade off is so worth it!!!

I'm happy to hear that you're responsive to Promacta!!! So, no longer weekly labs (hopefully it will stay that way)...I get CBC's every 2 weeks now, CBC and liver functions every month, dr's appointments in 6 weeks... If my next 2 CBC's are good, I'm going to ask my dr for montly CBC's.

Luca and Slammed,

Good news all around! I enjoyed my week off from doctors! I will be going for a CBC on wed. If I'm at 258 again, I will probably be told to drop down to 25. I feel pretty positive about this drug though. I don't feel that achiness that I did on Nplate which has been nice.

Vdeutsch85,

Best of luck on Wednesday! I will be thinking of you.

Thank you. I just want to say that for so long I felt so bad. The last few weeks I feel like my old self. I have no side effects in Promacta. I am energized and am able to workout and go out with friends which I haven't felt like much the last year because I was so tired. I'm also going to see my family in New Mexico for thanksgiving and New Years which will be nice. I think I'm getting to the point where I'm just gonna go and live my life to the fullest. I think Promacta is it, but if it's bit I will go back to Nplate. I know now why people say the first year is the hardest. It's such a rollercoaster ride.

Vdeutsch85,

I know what you mean. The ups and downs can be draining. That's why I was so hopeful with Promacta to return back to my "normal" life. It would be nice to not include weekly labs and regular dr's appointments...plus, my veins need the break from the needles.

Best of luck for your labs on Wed.

Sounds like you are all doing well on promacta! That is awesome!

well, I haven't read all 7 pages of this topic but I had to chime in about Promacta. I've been on it for around 2 years now. I've only had 1 count above 100 in that whole time. I am seeing a different hemo now and 2 weeks ago he upped my dosage to 100mg! I just don't like Promacta. I'm not having any adverse reactions. My counts aren't doing anything either tho! And with no long term effects being known....I just don't know. How long do I stay on it before I admit defeat to yet another treatment?

Gretchen - nice to see you again! Counts on Promacta are supposed to stay around 50k. That is what the drug is designed to do and the dose is supposed to be adjusted to keep a patient in that range. Higher counts could cause blood clots.

My count was 51 today....much lower than 2 weeks ago. I have clogged ears and my throat is sore. Hoping for not having another crash. As for my counts though if I could just keep them at 51 that would be optimal for a TPO. I have another appt next week for a CBC.

How many mgs are you on? I was on 25 for about a year and my counts were always about 50. Then they started to drop for a few months and I went to 50 mgs. I've been over 100 since then, usually about 120-150.

I'm on 50 now. I ended up calling Cleveland clinic ( where my specialist is). He said stay calm, you have a patten of platelet drops when you are fighting illnesses (even just little colds). He said let's do a wait see and check next week. It is so reassuring to have a specialist that has such a calm approach with me. I always feel better after talking to him. Itp does not scare him. He isn't in a rush to adjust my dose just yet since I was at 252 two weeks ago. However, when he first put me on it he was convinced I would need 75 mg just because of how high my Nplate dose was.

I just wish I could see him every week instead of the local hema. He really is clueless. He saw my count of 51 and asked if I was scared and wanting to have another CBC on Friday. I almost asked if he was kidding. I prayed for months for counts above 50 at the beginning of the year. I can def live with this count if it stays at this.

Vdeutsch85 wrote: My count was 51 today....much lower than 2 weeks ago. I have clogged ears and my throat is sore. Hoping for not having another crash. As for my counts though if I could just keep them at 51 that would be optimal for a TPO. I have another appt next week for a CBC.

I think from your other posts, you shouldn't worry with this count since you're sick. I was at 52k when I had my cold 2 weeks ago. Your counts will definitely rebounce once you get over the cold.

dmblank wrote: How many mgs are you on? I was on 25 for about a year and my counts were always about 50. Then they started to drop for a few months and I went to 50 mgs. I've been over 100 since then, usually about 120-150.

Personally, I think being around 50k with 25mg is pretty good. I would only increase to 50mg if I'm below 30k. Just worried for my liver in the long term since I'm planning to stick with Promacta for a while. Just like Sandi said, Promacta is designed for you to be in the 50k's, not be in the normal range.

Slammed,

You are absolutely right! I think my regular hema just gets to me sometimes when he says things like are you scared? Do you want to come back on Fri to make sure? The thing is I should know better and trust my instincts by now but still need to call Cleveland clinic for reassurance. I've always had anxiety but itp def brings it out even more.

Anyways I didn't dwell too much. Gearing up for Halloween tomorrow with my class! I felt the need to bust out my crown, wings and wand and become a fairy princess.

Are you going for a CBC tomorrow? If so good luck!

To all,

I forgot about the argument my regular hema and I had about counts being around 50. He said he'd rather have that be the ultimate lowest. I said I want my counts to be around 50 if I can maintain that. It seemed like he wanted them in normal range....I don't think so. So frustrating.

Vdeutsch85,

My hema tells me I'm an ITP expert now since I know how how to treat myself if I crash when he goes on vacation. Hehe...of course, the nurse always freak out and page the back up hema if my count drops.

I think it's funny that we try to keep up with each other's CBC days...I will get my next one on 11/7...is your next Wed?

I had some dental work done yesterday and my gums were bleeding pretty bad...the dentist had to put some medicine to help control the bleeding. He kinda freaked out, he was like, do you need to go to the hospital? I think I looked at him all funny and had to reassure him that I'm fine...the bleeding stopped later on the night. Glad that's over with...hate the dentist! :sick:

Vdeutsch85 wrote: To all,

I forgot about the argument my regular hema and I had about counts being around 50. He said he'd rather have that be the ultimate lowest. I said I want my counts to be around 50 if I can maintain that. It seemed like he wanted them in normal range....I don't think so. So frustrating.

You should show him the Promacta website where it says the following: "Use the lowest dose of PROMACTA to achieve and maintain a platelet count greater than or equal to 50 x 109/L as necessary to reduce the risk for bleeding."

us.gsk.com/products/assets/us_promacta.pdf#page=27

So, anything in the 50's at the lowest dosage is a success!

To all:
When we switched to 50 mg. I had dropped from the 50s to the 30s. The 50 mg. just pumped me up pretty high and I've stayed there. Like I said, I hover around 100-120. Funny how we all start to be able to tell what our bodies are doing without counts sometimes. If I don't have any small dime-size bruises, I'm usually pretty stable.
Slammed, I laughed about the dentist experience. My dentist was diagnosed with ITP after me so we trade stories and now he's seeing my hema!
Best wishes for a great day to all of you!
It's raining here! Yay!