Ready to quit

I'm so sorry to hear you are having such a time of it. My counts will fluctuate like that when I'm out of remission. Promacta put me in the millions and then when they decrease dosage shot me down to 1K...my body was destroying 250K platelets a day from week to week.. I also was bleeding internally after stopping promacta..after 21 years of this mess I thought I knew my systems..nope...I'm back in remission and very thankful They found splenetic tissue all over my insides..I had a spleen growing in my liver, appendix and had 48 little pieces of spleen all over inside...crazy surgery the end of 2015 to remove it all put me back in remission. They said it was a botched laparoscopic splenectomy...WHO KNEW! Have they checked you for accessory spleens? I had my spleen out in 2005 and didn't know all this was going on inside until 2015.. Sending you lots of positive wishes and platelets!

Thanks for that explanation, Rob. I understand what you're saying, but here's the deal:
About 18 months ago, I contacted a hematologist (I don't wish to name here) who is a noted NPlate expert. I didn't consult with him professionally, but did get his general advice about why my response to NPlate was so excessive during the first year. The main gist of it was that I needed to taper off the prednisone, because it had been found that concomitant therapies can boost the effect of NPlate too much. Maybe his advice today would be different, but after working for 3 years to get off prednisone, I refuse to go there again. Being on it didn't provide any stability. So far, neither has being off it. My current dose of NPlate is in the 4.5-ish range. Is that considered "high"? It was as much as 8 with prednisone. If nothing else, being off pred has made a lower dose of NPlate possible.

D, I remember reading your repeat splenectomy experience here with sheer horror. I'm so happy to know that the "cleanup" surgery has put you back in remission, but what a nightmare for you to deal with! I have to wonder how you don't sound bitter about it, not even annoyed. I don't have that kind of fortitude. To be clear, I still have my spleen, which I'll be going to my grave with.

Janet, it is interesting the NPlate expert talked about 'boosted effects'. I've wondered if the TPO agonist have a mild 'multiplicative' effect instead of a 'linear' (additive) effect when combined with immune suppressants. No evidence till now with the doctors comment.

Your apparent hypersensitivity anomaly is intriguing. It is almost like you are going in-to and out-of remission without any control / drug influence. How about external influences? Something entering and leaving your environment - allergies maybe? Certain foods? Toxic substances?

I think at this point after 22 years of fighting this I'm numb. I try to stay as positive as possible and learn something good from the negative..It's a never ending journey as you know. I wish you all the best and some relief from treatment..it's so hard on our bodies.

Hi Janet- omg splenectomy cures Itp in people over 65?! thats a good one. Interesting that you are on a lower dose Nplate w/o pred. I think 4.5 is a reasonable dose. I am on 5mcg. Top dose is 10mcg so our doses seem fine. I have lost weight so that has brought my total dose down since its based on body weight. I'm motivated to keep those numbers down. My dose is around 400mcg now, was up to 495.
I have not heard anything about Promacta causing more clotting events than Nplate. I would really challenge that statement. Anyone know the truth about that? I believe the people on the forum who have had strokes were on Nplate with high counts. Not sure if that is correct, just what I recall.
Just my experience, but I got counts that were more stable on Promacta. Counts slowly went up and they stayed solidly around 50K. I found the pill easy to take. Its cheaper and not so time-consuming as Nplate with its weekly clinic visits.
I just didn't like the way I felt on Promacta- brain fog, detached. But that is a rare side effect, most people don't have that problem.

poseymint wrote: I have not heard anything about Promacta causing more clotting events than Nplate. I would really challenge that statement. Anyone know the truth about that?

Given how this came from the same MD who said splenectomy "cures"... of course I question it, too. But I haven't done any digging in the studies to see what might be there.

I appreciate you sharing your Promacta experience. I realize that pills would be easier, but how did you keep track of your counts with it? Didn't you still have to go somewhere for blood draws? How often?
The other big question for me is whether my insurance plan covers it. I pay nothing at all for NPlate, because it's considered "medical" therapy, not drug therapy. Promacta is - I think - considered a "specialty" drug, and the co-pay might be more than I could handle. It's probably time to look into that to help guide my decision about switching, though.

Hal... "Synergistic effect" is the term the specialist used for the NPlate/pred combo. Whatever that means scientifically.
I've tried as much as any of us has to identify triggers. At one point, I had good reason to think it might be pesticide residues on produce but the theory didn't pan out. Viral illnesses usually cause a plunge, but they don't account for the rest of the year when I'm up/down/all around.

Good point, Posey. Studies have shown that Promacta causes more clotting issues than N-Plate but you're right, that is not what we are seeing here. I can't think of anyone who has had clots while on Promacta, but have seen plenty with N-Plate. N-Plate also causes much faster rises and also causes wild fluctuating swings in counts which could contribute more to clotting. Maybe a later study will reverse that....it happens. I think this group is a pretty good representation of the ITP population.

As for splenectomy being a cure in those over 65, again, studies show a much different picture. That has not changed in the past 12 years or so.