Rituxan time?

I'm getting near the end of my NPlate rope. After more than 2 years, my counts refuse to stabilize anywhere close to the targeted 50.
My past four counts at the same dose were 46 > 366 > 157 > 52. Weekly average count since January 1 is a worrisome 185.
It seems idiotic to risk an occlusive stroke in order to prevent a hemorrhagic one.

Doctor is strongly suggesting we try Rituxan at this point, which I have refused in the past. The thought of it almost panics me.
But after all this NPlate frustration, I'd be more agreeable to the idea if I thought it had a decent chance of working.
But I fear it has an even lower chance of success than before due to the time since my diagnosis (8+ yrs) and refractory responses to other treatments.
Doctor refuses to give odds on it, rightly so. He would not agree to using the low-dose option; it would be the full 375 per-.

We discussed switching to Promacta, but that would entail too much out-of-pocket expense. Possible liver failure is a pretty scary prospect, too.

I'd be grateful to know everyone's more enlightened thoughts on this tough decision.

midwest6708 wrote: I'm getting near the end of my NPlate rope. After more than 2 years, my counts refuse to stabilize anywhere close to the targeted 50.
My past four counts at the same dose were 46 > 366 > 157 > 52. Weekly average count since January 1 is a worrisome 185.
It seems idiotic to risk an occlusive stroke in order to prevent a hemorrhagic one.

Doctor is strongly suggesting we try Rituxan at this point, which I have refused in the past. The thought of it almost panics me.
But after all this NPlate frustration, I'd be more agreeable to the idea if I thought it had a decent chance of working.
But I fear it has an even lower chance of success than before due to the time since my diagnosis (8+ yrs) and refractory responses to other treatments.
Doctor refuses to give odds on it, rightly so. He would not agree to using the low-dose option; it would be the full 375 per-.

We discussed switching to Promacta, but that would entail too much out-of-pocket expense. Possible liver failure is a pretty scary prospect, too.

I'd be grateful to know everyone's more enlightened thoughts on this tough decision.

I feel your pain Janet! I tend to look first at worst case scenarios with all of the treatments and then want to throw my hands up in frustration because I don't like anything You are on more of a roller coaster with your medication than I am, and sometimes I just have to wonder about my own wacky rises and drops which aren't as dramatic as yours! I would think that with NPlate being a once a week shot, you may not get any more stability if you haven't gotten any thus far. You've been on it for a good long time with no stabilizing, so maybe it's time to switch if you are really worried about the potential negatives to the wacky counts (I'm sure I'd be freaking out too!).

Promacta is totally worth trying because of it being a constant, every day same dose type thing. Ugghhh that it's crazy expensive for you. I hate insurance companies; that must be so frustrating to have a good treatment option off the table because of financial logistics.

Honestly, as much as I was against Rituxan before I started Promacta, it's pretty much what I'd try next if I have to pick another treatment option. The PML risks and serious potential side effects really had me down before, but after having read more anecdotal evidence over the last year of people having relatively good success with it, I'd try to psych myself up for it if I have to. There really just is no easy choice!

No helpful advice for you, but I hope you find something that works better for you than NPlate! Good luck deciding and keep us posted!

Janet, I can't tell you what to do but I do want to wish you good luck with the decision. I know it's a tough one.

Curious. Do you respond well or poorly to IVIG? Is your blood glucose high or does it vary a lot?

How about a vegetarian diet trial? Have you tried that before? A lot safer, yes?
Or, the opposite diet, the Paleo / Immune diet?

Did the doc check your thyroid levels?

Update `
After much deliberation and waffling back and forth, I'm staying with NPlate for the foreseeable future.
My head can't dismiss the risks on Rituxan used for ITP.
And while Dr. Hema thinks Promacta might improve stability in that it's dosed daily instead of weekly, it might not. Factor in the cost I'd have to incur, the more serious side effect (i.e. potential liver damage), and the fussiness of switching from one to the other, I'd be little better off than just tolerating the unstable counts.

My next thought to mull over is that if I give up all treatment, I might not be at any greater risk than I am now ... Unless the count tanked and stayed consistently below 30. Age is against me in this regard. Mortality and morbidity from ITP is not kind to "senior" patients.
And fortune teller I'm not, helpful as that would be.

Well, Janet, you started this thread five months ago and you're still doing okay. It looks like what you are doing is not perfect by any means, but seems like the best option. How have your counts been?

Weekly counts since mid-July:
163 - 3 - 65 - 62 - 3 - 137 - 201 - 9 - 162 - 155 - 16 - 66
All at the same dose of 365 mcgs per week.

Crazy town, right?

Every third week your counts are down. How weird is that? No rationale behind the spikes and drops.

Yes, I noticed. There had been no set pattern like this until July 5 with a dip to 11.
The 3 weeks before that were outrageous... 303 - 577 - 288, then the first dip on the 5th when it started acting like a disjointed waltz. Dance, dance, dip. Dance, dance, dip.

FYI, in my Danazol research travails I came across using Danazol to treat 'Cyclic Thrombocytopenia'. I didn't dive into it but as I recall there is not necessary a 4 week cycle length and that the cycle length can be shorter or longer. Maybe even months long?

I thought about cyclic thrombocytopenia but I thought it was linked to a deficiency in thrombopoietin levels. You'd think N-Plate would be perfect to treat that. It could also be hormonal but it probably isn't in Janet's case. They just don't know enough about it, sadly.

I don't remember it being exclusive to women either. But didn't dive into it...

It's not necessarily exclusive to woman. Men have hormones too. However, since 80% of the population with autoimmune disorders are woman, it's more common in women.