Hal, I know! I’m really worried I’m going to shoot up that high again, I don’t understand why we couldn’t stick with the 100mg and give it time to work...but both hemos said it was the right thing to do given my crash. But yes, I was on 150mg for about 2 weeks, if that, before shooting to 490K. And when I got those labs done, I had already been dealing with a crazy headache for some days. So I’m guessing anything after 350K is going to make me feel crappy. I get to see if that’s correct because I’m still on twice a week labs so it’ll be easy to see my symptoms at various ascending levels (assuming I keep going up, of course) lol.
Mrsb04 trust me, I pleaded my case about why I think 150mg is too high for me. But what I was told is that it was the correct call after my crash. Once hemo saw labs up last week, he said to me he thinks 150mg is my correct dose. He did say if I get too high again, he’d have me skip Promacta for a day and then start taking it at 125mg and see how I do on that! I’m still worried though, as I had labs yesterday and was up to 163K from 97K on Monday...I mean, I’m very happy my platelets are up, but I just don’t want them to continue climbing at that rate
The good thing is I have another appointment next Thursday and I get to talk to my regular hemo, so I’m going to talk to him about reducing my dosage and get his thoughts on that!!
Well, you are very responsive to Promacta and thats good. I imagine that the 150 dose will shoot your counts up again- why would it not act the same as the first time? Its only logical that it would act the same, but sounds like your doctor has a plan in place. The TPOs are not designed to normalize counts but to keep counts in a safe range- it says that repeatedly in the Promacta and Nplate literature. I believe that counts are safest when under 100 on these drugs. That said, I don't want to be negative about the 167, you are doing such a GREAT job Carcamoc managing your care and managing your doctors! I am totally impressed that you stood up to two doctors and didn't go to the hospital for transfusions and everything else they wanted to throw at you! Good for you for taking charge and trusting your instincts and own information. You will find you feel comfortable and safe at a certain platelet count and a certain drug dosage- (you probably already know your comfort zone) . Always looking to find a balance between dosage and platelet count. I prefer the lowest dose and low counts, but doctors often feel better when counts are higher. Anyway, good job sorting things out and advocating for yourself!
Poseymint, you are so very sweet, thank you...I will say I would not have been this vocal and confident in myself had I not joined this forum and met you amazing and helpful ITP warriors!!
As far as the 150mg, that’s what I mentioned to the hemo...it worked well. Too well, that it was scaring me that it would have just kept on going up to who knows where, had I not stopped! I guess they figure better safe than sorry and they can always tweak the dosage if we get to that point again..? And this time in a different way so as to avoid a long lasting crash. I’ve never actually discussed with my doctors why they want my counts to be normal although the point of treatment is to get at or around 50K, but that is a good thing I can bring up next week! The only thing they have both said to me is that they cannot expect to follow the guidelines with me as my case of ITP behaves so differently from the majority of their ITP patients...unfortunately for me lol. But we got this though!! We’re so close, it seems!!
Diagnosed in 2014. I'm also a renal specialist nurse
Thank you received: 299
I’m with Poseymint on this.
I went to UK convention a couple of years ago. One of the speakers said doctors are more worried about bleeding whereas patients are more worried about drug side effects.
Personally I would go to 125mg and see what happens. I dropped my dose slightly about a year ago on a 96 count without consulting my Haemo. Next time I saw her she said “ great counts you can drop dose slightly”. Didn’t bat an eyelid when I told her I already had. She recently sent my GP a letter telling him how pleased she is with my self management.
I can understand that your doc wants a bit higher count, to serve as a buffer, because of possible crashing. But a buffer with counts over 200 is *not* going to work because of headaches. I think I've mentioned this before. Periodic uncontrolled crashing (very rare) is probably better handled with steroids than juggling Promacta dosage. Look through 'midwest6708' posts to confirm. Steroids have a more immediate affect than a change in Promacta dose. Perhaps your doctor(s) don't know how that might be possible to do that. I dunno.
What bothers me with the doctor was the full week off of Promacta. Wow. That seemed completely nonsensical/illogical to me. If the doctor actual thinks crashing is a problem, that was a terrible perhaps irresponsible thing to do.
It is reasonable to expect the next count (monday?) to be over 200. Even likely it will happen. Until you have actually had an uncontrolled total crash to sub 10 from a 200+ count, IMHO, it makes sense to go to 125mg on a 200+ count on monday.
Perhaps there has been some quick drops a week or two after an IVIG treatment but Promacta is different. One gets another dose every day. Simply, I'm not convinced crashing is going to be a significant feature while on Promacta. Keeping counts above 100 may be a sufficient buffer for all to turn out well.
Yeah, I honestly seemed a lot more worried about being off meds than the doctors were. And for what it’s worth, I do feel like I’m going to end up on 125mg sometime in the next couple of weeks! What complicates the situation of me taking the initiative to reduce my dosage is that I have 3 bottles of 50mg pills. So I’d have to cut the pills & I’ve seen a couple of people here mention Promacta is not meant to be cut. Which makes sense because I’ve tried to cut them in the past and it is a disaster lol.
Also, I tried asking the other hemo about the prednisone that was his idea to avoid a crash and he seemed really disinterested in it in general. He said something along the lines of, Well steroids haven’t worked for you in the past, so I don’t know if you should even bother with it. I was shocked lol. I really just wanted instructions on how to use it bc my regular hemo wanted me to do 70mg a day for 7 days and that sounds crazy high..??? Idk, I feel like people that use it as a quick rescue here do not do that high a dosage for that long!!
Yes, they do have a tendency to crumble. A pill splitter is required. I put the pill in the refrigerator for at least an hour before cutting it seems to work better. Takes the moisture out which I think contributes to the crumbling. I've cut 50mg, 25mg, and now 12.5mg tablets which are pretty small. Practice makes perfect.
Right. If low dose steroids don't work, that isn't an option.
FYI, the next Houston PDSA support group meeting is the 21st. I can message you the facilitators email if you're interested. LOL, meet fellow ITP warriors.
Diagnosed in 2014. I'm also a renal specialist nurse
Thank you received: 299
Just a thought..100mg one day and 150mg the next. Daily average =125mg.
Or Tuesday/Thursday/Saturday take 150mg, on the other 4 days take 100mg (or vice versa it’s up to you). This is what my haemo would say. Why? Because you don’t have to remember what dose you took yesterday
Carcamoc, I stole the refrigerator idea. LOL, I have several 'YouTube degrees'. One of them is on 'Pill Splitting'. Only had to watch ~10 videos on the subject to learn about the crumble-free pill splitting technology.
Check your inbox for the Houston support group meeting info.
Surprising update: I have to stop Promacta again because I shot up to 585K this time around. I have to recheck platelets on Friday and we will go from there. I do have an appointment with my regular hemo that day so I will ask him if I can just restart the Promacta at 100mg on Saturday so as to avoid a long crash like the one I got last time for taking a week long break from the meds. I actually haven’t had any headaches this time around...have been feeling pretty tired and lightheaded though. Also been dealing with a crazy sore throat that I feel all the way down into my lungs. I was told that was because of the Promacta and the shortness of breath is due to the high platelets. I’m getting together a list of the things I want to mention to the hemo...the first being that I do not want to be put on 150mg again, it is obviously too strong for me. The second, that I do not want to take long breaks from medication. And I’m sure I’ll think of more things between now and then...
Lather, rinse, but don't crash!
490 (from 75mg start) and now 585 (from 0mg start). I dunno, but it sounds like you are doing better. Maybe I've got the numbers wrong.
The big jump up on the 2 week count check, now occurring twice in a row, is a bit unusual. It's like your immune system runs out of gas and gives up on destroying platelets after 10 days or so. Makes me wonder if, from a crashed count, taking 125/150mg for 7 days and then 50/75/100mg going forward would work well. But. Hopefully things will get better just by going to either 100 or 125 after a short break.
FYI, a couple years ago there was some discussion on here about how (some?) megakaryocytes mature in the lungs. Maybe that is what you are experiencing.
Hal, yes, these levels were extremely surprising to me!! & it’s interesting you mention the different dose plan because hemo said he is considering the possibility that this comes into play when considering cyclical ITP in my case. He mentioned it is crucial I take Promacta in the days leading up to my menstruation, as that seems to always be close to a crash!! So that made me think maybe outside of those days a smaller dose would work...and this might support that idea. Was told it was just a hypothesis, so we will see!
I’m also happy to report I have no sore throat or shortness of breath/pain in lungs today thankfully
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