Diagnosed in 2014. I'm a retired renal specialist nurse
Thank you received: 336
Every doctor I have ever seen, irrespective of whatever treatment I was taking at the time, has told me to stay well hydrated as all my platelets are immature and sticky, thus increasing risk of thrombotic events. This is why normalising platelet count is dangerous in ITP.
JJ wrote: Well, it depends where your ITP is at as to how long the platelets last. If the count has been high for a while then there will be old platelets there and if the count suddenly drops it won't necessarily be the old ones taken out, it would be random which ones went, so you'd have low platelets plus some that didn't work well, so a double whammy.
Ok. I guess I made a perhaps false assumption here. That there was some kind of special (surface?, protein?) quality about young platelets that keeps them from being destroyed - thus the reason why a count of 0 isn't common. I wonder that if platelet destruction was random that predominantly young platelets wouldn't be typical.
AFAIK, the immune system is more than capable of destroying not only all platelets but destroying all kinds of other harmful things on a daily basis. Don't really know.
Quick update: Down to 229 today, they want to recheck on Friday...I’m thinking I don’t want to wait until I’m extra low to restart Promacta though, since it’s when my doctors panic and put me on 150mg. I might try to restart at 100mg and see how it treats me...it’s been nearly 2 weeks being off of Promacta, so I’m kind of expecting a crash one of these days...
50mg sounds good, I do think the levels are ok enough for me to play around a bit right now. I definitely did not see myself being off of all meds for 2 weeks, but here we are lol. Would you guys advise me to let my doctor’s office know at my next labs that I restarted Promacta? I don’t have an appointment coming up, but I should give them a heads up, right?
Yeah, that’s why I feel like I have to step up and do something vs just sit and watch me crash again waiting for my hemos to get back from vacation (what are the chances they’re both on vacation at the same time??) lol.
Diagnosed in 2014. I'm a retired renal specialist nurse
Thank you received: 336
I wouldn't call them. Have a go at managing yourself and contacting them for advice if your plan goes awry.
That is what my haemo positively encourages. I saw her yesterday my count is 40.
She said monthly bloods please and see you in 3 months. Message or ring me if you need to.
Mrsb04: No, I haven’t taken prednisone in a long time! I do have a bottle of a bunch of 10mg pills in case of emergency, but I have crashed since and have not been instructed to use them, so I don’t really know why I even have them...
I’m now at 106, was instructed to start Promacta at 100mg on Monday, which I had already done. I don’t have any further instructions as of now, but my regular hemo comes back from vacation next week so I’m just going to resume once a week labs unless I hear otherwise.
Mrsb04: Yeah, I feel the same way. Now I’m alternating 100mg/150mg every other day, I guess hemo wants to see what effect we get out of that. But if I start climbing up again, I’ll probably ask them to let me try a lower dose and see if that holds me over until when I suspect I actually need a high dose!
Yeah, my understanding is he’s used these high doses with persistent ITP cases...I feel like my high levels have only reinforced his idea that I’m supposed to be on a high dosage. After the first time my platelets got too high he told me he believed 150mg was gonna be my correct dose. Obviously, that was wrong...but I’m glad he at least accepted alternating dosages and doing something differently. I have labs tomorrow and an appointment with regular hemo on Thursday, so I’ll be discussing what we’ll do in the event of this plan also sending my levels through the roof...
Hi: Yes I have had experiences with changing dosages of Promacta with bad results! While I have never taken over 75mg daily, I have had dramatic count decreases with even small changes in dosage. Four weeks ago I dropped my dosage from 50 mg/day to 37.5mg (I was running counts of 80-95K and wanted to reduce to the 50K range--both because it is the "target" number given by Glaxo and to lower my $750 cost for the drug) and found that my count had dropped from 95K to just 6K in four weeks!! This is the second time where a 12.5-25mg change in dosage has caused me to crash below 10K, but I would not panic yet. I think it is wise to get your blood counts weekly at this point, but I would not go too long without any medication at all...You didn't say what your dosage was when you were at 36K, but that is a good number to live at (I had run under 50K for several years without serious issues) and thus a dosage that I would consider as your base dosage (unless you have a history of wild fluctuations on this med). Hope this helps!
Carcamoc, You are very patient with this doctor! haha His insistence on the 150mg overdose just mystifies me. It lacks common sense- sorry I'm sure he means well but I just feel like he doesn't understand the drug. I've read your story through and just my opinion- I would go back to the dose of 50 or 75 and just stay on that dose until your immune system settles down. But that said, I know there is the problem of your monthly period, that does make it difficult. The only reason that I can be so casual about low counts is that I'm in menopause, which is a great advantage when you have ITP. Good luck! I would guess that the 100/150 will in fact shoot your counts up again. I hope I'm wrong. You are smart and I trust you will watch out for yourself.
Poseymint, yes I totally understand! For the moment, the alternating doses at least let me average out 125mg a day. And I’m actually responding to this as well...labs on Tuesday showed me going back up to 180K. I have my appointment w/ hemo later and am going to make sure we’re being proactive about not letting me shoot up too high! I’m actually also going to ask him why we haven’t really stuck to the target of 50K as is usually the norm. 50K is a great level, for me anything over 30K has me relatively asymptomatic! I definitely have decided if it looks like the doctor is taking too long to pump the brakes, I will be lowering my own dose and seeing how that goes...
This is the first time I have seen someone with ITP having to worry about going too high in their platelet counts!!Somewhere I've missed how your MD even got you up to a 150 mg dose--well beyond Glaxo's recommended top dosage. You are certainly right in getting more assertive with your doctors--it took me awhile but now my doctor asks ME what I think the dosage should be when there is a bump in my numbers. My experience is that it takes 1-2 weeks for the counts to stabilize after each dosage change, so be careful not to change rapidly as your numbers will be all over the map. I suggest you shoot for the 30-50K range that you mentioned works for you, and stay away from the megadoses if you can. Good Luck!!
Luca: I have been on Promacta since January...25mg worked well in the beginning, so hemo followed guidelines and cut dosage down to 12.5mg and my platelets tanked almost immediately. From there, we went 25mg higher every time I crashed. After ending up crashing while on the 75mg, my other hematologist (very experienced in persistent ITP, but far from me so I see him less often) suggested going up to 100mg. And repeat the 25mg addition every time I crashed. That’s basically how we got here...trust me, the high platelets are a very recent issue, although I agree it is the last issue I thought I’d be having with this disorder!
So I straight out asked why we never shoot for 50K platelets when treating me and he explained that my body does not respond like other ITPers and he, nor my other hemo, feel that following guidelines work for my case. He even says they call regular ITPers horses and then you got the weird 10%ers who do not respond to treatment like the other 90% and they call us zebras haha. I might just change my profile picture to a zebra lol!! Anyways, he basically said he is satisfied for now...says 180K is a very good level to be at and he hopes the 100/150mg alternating doses keep me around that number. I told him I do not want to go above 200K and he agreed if next weeks labs are 200K+ he will talk to med center hemo about going down to 100mg. In the meantime and for the foreseeable future, weekly labs...yaaaaay. Also, quick question...does anyone have issues with blood draws? I get poked a lot because they say my veins are tiny and deep, and my one good vein has a bunch of scarring one time last month I got 5 pokes for one lab test...it can really wear you down especially when I’m doing two a weeks!! Any tips would be appreciated
Tips on blood draws: Drink lots of water before you go for a lab test. Tell the phlebotomist which veins don't work well. My side veins have less scar tissue, so they work better. If you have a student phlebotomist, tell him or her that you'd both be happier if someone more experienced with difficult veins did the draws.
luca wrote: Hi: Yes I have had experiences with changing dosages of Promacta with bad results! While I have never taken over 75mg daily, I have had dramatic count decreases with even small changes in dosage. Four weeks ago I dropped my dosage from 50 mg/day to 37.5mg (I was running counts of 80-95K and wanted to reduce to the 50K range--both because it is the "target" number given by Glaxo and to lower my $750 cost for the drug) and found that my count had dropped from 95K to just 6K in four weeks!! This is the second time where a 12.5-25mg change in dosage has caused me to crash below 10K, but I would not panic yet...
Right. A telling example of a odd (zebra like?) dose response Luca. I get the impression that some folks (row 4) have this nonlinear response to TPO-RAs. It's more of a 'all or nothing sort' of thing and shooting for a certain count value (eg 50) isn't really possible for them. The dose 'proportionality' isn't there, it is nonlinear.
A PDSA conference presentation last week seemed to suggest the reason why. The nonlinear response may be because there is more than a single affect TPO-RAs have on Megakaryocytes. Specifically, when TPO-RAs attach on the Megakaryocytes it more than just stimulates it. The presence of TPO-RA on the cell also prevents it's destruction by a immune system which is intent on attacking it (row 4). So when the (higher) TPO-RA dose level finally kicks in, Megakaryocytes suddenly begin to live (to maturity), AND, they are strongly stimulated. If both those things don't occur, then the cell is destroyed and counts don't rise. All or nothing.
The conference presentation explained how Avatrombopag/Doptelet does a better job at preventing Megakaryocyte destruction then either Nplate or Promacta when one has an immune system which is destroying those cells.
Horses and Zebras? I wonder if patients would prefer analogies with different breeds of cats?
In the conference they also mentioned combining different TPO-RA drugs but didn't motivate why one would do that. Maybe because Doptelet is so expensive they are thinking of prescribing only small amounts of it with either Promacta or Nplate?
Ditto on what Karenr wrote. Also, remember you have both of your arms and hands. I know some phlebotomists think there are only a couple places to stick a needle, but that is not true. Also stay warm. If you are cold they can put a hot pack on the area and that will help.
After a while you usually get to know the phlebotomists, and they you. They will put you with the 'experts' and/or you can request to be put with a certain person(s). Don't be shy. All those needles can definitely wear one down. You are not alone.
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