TOPIC:

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.

For what it is worth. I would go down to 125mg asap and see what happens. I get twitchy if my count goes above 99 !!

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!!

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.

Two cents.
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.
www.pdsa.org/support-groups.html

Hal thanks for the tips! I do have a pill cutter, luckily, but the fridge suggestion is genious!

As far as the steroids, I feel like they worked ok up until I started tapering so I don’t know if that means they don’t work for me...

And yes, I’d love the info! I’d have to check all the details to see if I can make it, but I would love to go out there and meet fellow ITPers

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.

Cheers to no headaches !

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

I dunno. How about this hypothesis. Lung issue indicative of producing a large number of platelets. Headache indicative of immune system destroying a large number of platelets.

Oh my. Trying to cope with cyclic ITP with dosing sounds really tricky. Probably impossible to do with Nplate because it is a weekly. Promacta one can increase and decrease on any particular day. Maybe one of your doctors has done this before (successfully) and has a plan?

Hal, my regular hemo is not experienced with difficult cases of ITP. My other hemo, who I see less often because he is an hour away, is more experienced and has given us our best ideas, but he has told me he’s never had a case quite like this. He told us about this hypothesis and said that at this point we are just going through trial and error. I’m hoping either 100mg or 125mg help though...I’ll definitely mention I want to make sure each dose is given the sufficient time to work because at times I feel like they change my doses really quickly in response to me dipping under 50K :/

Labs today were at 629K platelets, so I was told to hold off until Tuesday when he wants me to recheck them. I am considering going in on Monday however...just in case I get any sudden changes. For now, I’m taking aspirin to help put my mind at ease about being at such high counts :/

I hope they drop a bit it’s worrying having a high count. I get uneasy in the high 90s. If this is cyclical it’s going to be a balancing act dosing Promacta.

Mrsb04 I hate being at these counts...but I’ve tried extra hard to stay hydrated and active to prevent clots from forming. And I’m trying to wrap my head around the possibility of cyclical ITP, but figuring it out seems daunting. It would explain a lot, but idk how we’d go about finding the proper doses for pre-crash and post-crash

Carcamoc
Good you are taking preventative steps.
How are your headaches and is your cycle as regular as clockwork?

Mrsb04, I’ve only had the occasional quick sharp pains in my head this time around...no lingering throbbing headache, surprisingly! And no, unfortunately my cycle is known to jump around at times :/

Quick sharp pains? Sounds like what happens with me and Promacta. It is like some platelets have been slightly 'activated' (protruding hooks to join together?) and they scrap on things going through the brain. That's the way I would describe it. Low dose Aspirin works really, really well for that - in my case.

Oh no, 629! Definitely got a stronger/longer response out of 150mg this time around. If you can sense when counts are crashing, by a headache and needing Aspirin, perhaps you will be the best judge to know when to switch from a low dose to a high dose. Then stick with the high dose for X days. What do you think?

BTW. There was a new person at our local PDSA meeting this past weekend. His story amazed me. He is a success story with Tavalisse ! I couldn't believe it. ITP started 9 years ago with steroid response and Rituxan remission for 7 years (row 1 response). Relapsed. Needed highest doses of Nplate to barely get counts up (row 4 response). Now getting ~150 counts with 150mg of Tavalisse plus 0.25 dose Nplate. The low dose Nplate looks like a row 1 remission and the Tavalisse is taking care of row 4.

LOL, need to update my ITP treatments table for Tavalisse/Fostamatinib. Need to remove the question mark at the end of the word. It works for row 4 all right.

Some info re aspirin. I was told that it affects the platelet for the whole of its life unlike the other analgesics which only affect a platelet for a few hours. So the normal life of a platelet is about 10 days so if you take aspirin with a high count and a few days later the count drops very low, the remaining platelets will still be affected by the aspirin... result is bleeding.

JJ: Oh wow, that’s good to know! I always wondered what the difference was between aspirin and other things like naproxen, ibuprofen, etc...

Hal: I’m definitely going to have to be more observant this time around and make any changes I feel I have to make...hemo already said we’re basically guessing until we figure it out, so what’s the harm right? Lol. But yes, this time around I’ve had a stronger/longer lasting response from the 150mg...I got platelets rechecked today and am at 619K, only 10K down from Friday. So I have to hold off of Promacta until Monday when I go back for labs!

We also get to see what my cycle does to my counts without any medicine or treatment involved, since I’m expecting it to start soon...So I’m really curious to see how that is gonna go!

JJ, interesting. But what about this. If one crashes shouldn't the platelets that are left always be the youngest platelets - who have not been 'deactivated' by aspirin?

Oh my, 619. Would never have expected that. Hope you can figure this out carcamoc. Best case scenario. Something has changed (ITP fever broken?) and now the 'low' dose needed is close to 0mg. That would be more like typical cyclic ITP, as I understand it. Ok, not the 'best' case. Just something not so completely different from common experience.

10 days is normal platelet lifespan in none ITP people. If ITP is a destruction issue then I find it difficult to believe platelet life span ever reaches 10 days. Mine certainly isn’t as evidenced by my indium scan which was both fascinating and worrying to observe.

Hal: That wouldn’t be so bad, but it’s gonna take a lot of work to figure out how to get there so I’m trying to be patient...

Mrsb04: Oooh, what is an indium scan?

Carcamoc
In a nut shell it’s to do with nuclear physics and is classed as a test to see if splenectomy could be successful.
100ml blood removed. Platelets in sample coated with radioactive indium then returned to body and scanned whilst moving around body ..sites of platelet destruction hi-lighted on scan, go back next day and day after for rescanning to see how many coated platelets are left. In my case virtually none as could see spleen destroying them on scanning.
Don’t think it is available in US. I’m very lucky as my local hospital (20 minutes train journey) has a nuclear physics dept that does the scans.

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.