I've been on 75mg the whole time. Yes, I've been sick a lot lately, but I got some of those higher counts previously mentioned while I was sick. (I had pneumonia in September, a cold in October, and I'm getting over a cold right now. Gotta love the effects of being on steroids and rituximab.)
I wouldn't give up on Promacta after just one lower count. Counts fluctuate, sometimes theres no apparent reason. I've had counts of 3 on Nplate, then they bounce back up. My policy is to not adjust the dose- just stay with the same dose and watch the counts over a period of 4-8wks. Then you'll have a better idea of what Promacta is doing.
cedrap wrote: I'm really disappointed. I've been on Promacta for about 3 months and it's suddenly stopped working. Have other people experienced this?
Once Promacta started working I had great counts: 293, 162, 160, 135. Then on Monday my count was at 24. We're going to re-check on Friday but my Dr wants to move me toward starting Tavalisse.
cedrap, is it safe to say that counts started at 293 and then eventually fell to 135 over a period of (2x4=) 8 weeks or so? I assume your doctor doesn't think bone fibrosis/scarring is the issue here. When you had pneumonia did they give you a bunch of antibiotics?
IMHO, I'd be looking to a higher Promacta dose if counts fall further. For insurance approval, I've heard the term 'medically necessary' to get more than a 75mg dose approval. Also. If you start Tavalisse instead, I would lobby your doctor to continue Promacta at 75mg so that your odds of responding to Tavalisse are better. Then taper Promacta if/as needed on response to Tavalisse.
Ah ok, 92 is good. Interesting. Do you happen to remember the name of the antibiotic that raised your counts?
I first heard about Promacta doses higher than 75mg from Carcamoc10 earlier this year. She knows more. As I recall, with no response to 75mg, she ended up seeing a Hema that knew a lot about treating difficult ITP. Later, I met someone at the PDSA conference this summer that was on 110 to 120mg dose. He mentioned 'medically necessary' to me for insurance approval. So it is a recent thing that appears to be becoming more popular. Thank goodness. Promacta non responders are now becoming responders - albeit at a higher dose.
Recall that phagocytes are where platelets meet their demise in ITP. So it is blocking platelet destruction some how. In some other reading, it looks like the antibiotic only raises counts when one has an infection too. Taking the antibiotic alone doesn't raise counts.
Diagnosed in 2014. I'm a retired renal specialist nurse
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Ceftriaxone a commomn side effect is "Abnormalities with your white blood cells (such as a decrease of leucocytes and an increase of eosinophils) and platelets (decrease of thrombocytes)" From the UK PIL
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