Promacta- so far so good update

Hi- This is an update from an earlier post. I've been taking 50mg Promacta daily for 8 mos. I've just completed a slow Prednisone taper, which I'd been taking for a full 2 years- so glad to be off that ride!
Promacta seems to be working well for me with no side effects, except for slight dry mouth in the morning. I'm now seeing my hemo every 2 mos. I get a CBC every 2 weeks and CMP once per month.

My counts seem to be stabilizing around 35-40K. But over the past 8mos have been up and down with Promacta. As long as its a reasonable count and I have no serious bleeding symptoms, I haven't had reason to adjust the dosage. And since I was on a small dosage of prednisone, I could more easily adjust that.

I tend to not bleed much even when my counts are down around 10K. I went to the emergency room once when my counts dropped to 6K but I was sent home (with prednisone) because I was fine. (until I got the bill) If I had it to do over I would have tapered off the high doses of prednisone more quickly. The first hemo wanted to keep me on 60mg then 40mg to keep my numbers around 50K but that was harder on me than having platelets at 20K. I changed docs and the new hemo and NP let me be involved in decision making. They would like the counts to be above 30K but if I say I'm okay in the 20K range, they trust me.

Best of health to everyone! ~ posey

July 62K,
Aug 40K
Aug 107K
Aug 32K
Sept 40K
Sept 37K
Oct 37K

That's great! Seems like you've reached a good goal - maintaining safe counts without too much upheaval in your life. Good for you!

I'm very glad Promacta is working for you. It seems to be working for me too but my counts fluxuate from 50ish to 14! In the matter of 2 weeks. The past couple of months it's been up and down every week I go for a CBC. Even at 14 my docs were letting me ride it out because I don't have any wet bleeding. Some kinda "good" bruises though. They are starting to push splenectomy hard, but I'm not ready for that yet. For now I'll keep adjusting my Promacta dosage!

Server hang on to that spleen! hah My MD was really pushing me last year for a splenectomy with all kinds of promises of how easy everything would be afterward. I'm in my 50s and just didn't think it would be wise. At least not until I've tried other things.

About the up and down counts- I noticed after getting a flu shot I've had some slight nasal bleeding so my counts must have dropped. When you adjust the dosage of Promacta, do your counts drop when you lower dose?

I forgot to refill mine (through the mail) and didn't have any pills for 3 days. Interesting, it didn't seem to affect my counts. take care~ P

I'm kinda close to that 50 mark too and have no intention of loosing my spleen! I've been advised not to get the flu shot. I've never had any problems with that kind of sickness so I'm comfortable with not getting one.
My counts did drop a very little bit with each change, until the last time when I bottomed out at 14 on 50mg/day. I just don't get why my counts fluxuate so much. I can't find any rhyme or reason for it. I've tried taking it in the morning, at night, on any empty stomach, just after eating something. I just don't get it.

Just an update: After the flu shot my counts dropped to 29K. For me, I'm glad I got the flu shot because I believe in it. Not everyone agrees. But it affected my platelet counts and I've had achy joints ever since. Body aches can be a side effect of Promacta, but I think in this case it was the flu shot.

Caught a cold next and had some dental work done. My counts have dropped further I'm sure because I'm getting some bruises, probably down around 20K. Hemo suggested going back on Prednisone but I think it will bounce back up, so am watchin and waitn'.

About taking Promacta: I think its best to be consistant, don't know if it matters but thats my thinking. I take it in the middle of the night, 4 hours after I eat and 4+ hours before I eat again. Seems easier since I don't have to think about if I had calcium or not.

Sandi~ I think you mentioned somewhere that the new platelets that are stimulated by Promacta and NPlate are stickier. Is that right? Any more info you could give me on that?

I'm having symptoms of "peripheral vascular ischemia" which is narrowed arteries going to my legs. I think I noticed it when my platelet counts spiked up after being on Promacta for 6 mos. but didn't connect it to Promacta. Talked to my hemo and she didn't think it was a side effect. Advised me to get more exercise, lose weight which is good advice and I'm making some changes.

But what I'm thinking is that I had the problem for a while with no symptoms. Then add the Promacta and that caused it to get worse. My intuition and common sense tells me that there is a connection, and maybe Promacta isn't working as well for me as I thought. Will be looking into it.

good health all~ p

Posey - all new platelets are bigger and stickier, so it would make sense that an abundance of them could cause a problem like that. I don't remember posting anything about it, but if you read about reticulated platelets (young ones), you will see the connection.

PAD is caused by hyperaggrability of platelets and it is treated with anti-platelet medications, so the possibility that a TPO could cause that is plausible.

So, do you recommend Promacta? I had my spleen removed 3 yrs ago and the itp came back just recently. Doctor wants me to start Promacta next week.. Have you noticed any side effects? I'm alittle nervous after reading the info on the product. Any advice

Yes, I absolutely recommend Promacta. Its been great as a way to get off Prednisone. I had been on that drug for 2 years and couldn't get off. Promacta has been easy and worked well for 6 mos. I may have to tweak the dosage now and keep a close watch. Overall its been a good option and I'm glad it was available.

What I think is important to look at in side effects is: Are they reversible? In my experience, the side effects of Promacta can be monitored. In most cases if you get blood drawn regularly you can see if you are having a side effect. And from what I've read of other people's experiences, the side effect can be reversed.(in most cases)

Last year I had 4 wks of Rituxin and worried about side effects. But the worst side effect I had was from taking too much Tylenol for back pain! Tylenol was causing inflammation of my liver. Of course I would have never known if I hadn't been getting blood drawn every week, but it showed me that drugs I considered harmless can have side effects too.

My advice for Promacta is to just keep monitoring it. I get a CBC twice a month and CMP for liver once per month. Nothing is perfect but its been a good option. Good luck!