Hi everyone! I have posted my story before but actually have a question for anyone who has tried a high dose of Promacta (over 75mg) I am currently on 150mg and have been having recurring head splitting headaches I had a suspicion it was due to high counts since I went from 36K to 225K in a week...and this week I am at 490K! I was instructed by my hematologist to stop taking Promacta immediately and go in for labs on Monday. If platelets then are below 200K, I will start Promacta at a reset of 100mg! My question is has anyone had to stop Promacta and retest before starting again? Did it make your levels plummet? I am very scared that stopping altogether will make me crash, but I also want to try doing things differently since we have tried cutting dosages and it just doesn’t work for me. If anyone has had to do this even at a lower level dose, I’d appreciate your input on how stopping and starting Promacta again has worked for you! Thanks in advance!!
We cannot change the cards we are dealt, just how we play the hand.
Thank you received: 7
I know how good you are feeling ! everything looks normal ? I have had this twice .
Hopefully , Promacta has a well defined dosing algorithm:
Everything may be normal ? Maybe
Lman: thank you for sharing that, it makes me feel a little bit better that it is normal to stop the dose at this level of platelets and then restart later as needed!! And as far as I know, everything else is normal, no cause for concern...Total Bilirubin a bit elevated but still within acceptable levels! And while I am excited my body is finally reacting to the Promacta, I never knew the struggles of having too many platelets and I’m trying to adjust to this throbbing headache that has stuck around since this past weekend
Mrsb04 I see, so it takes a bit longer to get back on Promacta if needed? Or do you mean if my counts are still high it could just be from this high dose I was on? I think the plan was to retest again if my counts are still high on Monday, but they hadn’t told me when yet. Also, I have the liberty of just going in for a CBC whenever I’m not feeling well and giving my doctor a heads up so he can look for my results!
Carcamoc, where are you in the (possible) count pattern? Expecting increasing or decreasing counts between now and next week? A 'pattern' seems to remain a wild card in all this - still.
Just for fun, how about a little math. LOL, that is the way my high school math teacher would put it - trying to make math 'fun'. 490 divided by 3 is about 150. So, maybe think about (150/3=) 50mg of Promacta. Nice. Not near term mind you. Sometime in the future. Let that immune system settle down. With hope, the count pattern issue has resolved itself.
If you message your doctor, he'll likely tell you it's ok to take aspirin for headache and that high of a count. You may find a small amount goes a long way. Just 100mg may do wonders.
I tell Lman about counts and Nplate dosages for row 2: lather, rinse, and repeat. LOL, he tells me: lather, rinse, and crash.
Hal: I honestly don’t have a clue where I will be on Monday...this is unprecedented for me haha but yes, I think a lower dose is what my hemo wants to work towards with this reset, which I am so thankful for because I was ready to move on...who wants to be on 150mg of Promacta? Lol. And thank you so much for the tip about the aspirin, I made the mistake of googling it and scared myself into thinking I have a blood clot in my neck I’m going to try the aspirin and call my hemo’s office in the morning if it hasn’t gone away because I’m not playing around with these counts!! And I can’t stand it anymore, how do people live with this pain???
When using the TPOs the risk of stroke and blood clots are increased. I guess we all know that but it bears repeating. Over the years there have been people on the forum who have had stroke, pulmonary embolism (lung clot) and deep vein thrombosis. For that reason, I feel concerned when I hear of high dosing of TPOs and counts shooting up. Anyone who is on TPOs, myself included, should know the symptoms of stroke, deep vein thrombosis. Caramoc- hope your counts come down soon! take care
From the Promacta website- High platelet counts and higher risk for blood clots. Your risk of getting a blood clot is increased if your platelet count is too high during treatment with PROMACTA. Your risk of getting a blood clot may also be increased during treatment with PROMACTA if you have normal or low platelet counts. You may have severe problems or die from some forms of blood clots, such as clots that travel to the lungs or that cause heart attacks or strokes. Your health care provider will check your blood platelet counts and change your dose or stop PROMACTA if your platelet counts get too high. Tell your health care provider right away if you have signs and symptoms of a blood clot in the leg such as swelling, pain, or tenderness.
Poseymint: Thank you, I knew I had to google because I need to know what to look out for, but now I’m very worried because I read that high platelets don’t have symptoms...when there are symptoms at high counts it usually is because of clots or bleeding which is why I’m going to call my doctors office in the morning and let them know this pain is persisting. Maybe they can schedule an outpatient CT scan to make sure everything’s as it should be!
Carcamoc~ Try not to worry, I didn't mean to alarm you. but yes probably should get it checked out. Just my thoughts- its not likely clots or bleeding, sounds more like a Promacta headache. Promacta has headache as a side effects and common sense (plus experience) tells me that the higher the dose- the more side effects. When my dose of Nplate increases I always get a headache. Its a particular kind that is across my forehead when I wake up- my Nplate headache. I drink coffee and it goes away.
The symptoms of stroke/blood clot in the brain is a "thunderclap" headache. It is so severe that it can knock people to the floor and is intensely painful. Also face drooping, paralysis of the arm, and slurred speech. A person needs immediate emergency treatment for that.
A blood clot in the leg or lung is also painful and couldn't be ignored- you would know if you had it I think. So yes, as you said get it checked out but try not to worry. Do you take anything for the headache? I usually take Advil- it "inhibits platelet function" so can give me bruises if my counts are low. It makes the platelets less sticky so less able to form clots. So if you want to feel better Advil/Ibuprofen might be an idea.? Will be interesting what your doctor advises. Take care and not to worry, your counts may have already come down. By the way, I have quit Promacta 4 times. Each time my counts drifted slowly down, they did not crash. Hope you feel better soon. Let us know how it goes!
Thank you Poseymint! I definitely feel a bit more calm about it all as it really only started when my platelets passed 300K! Other than that I hadn’t even experienced headaches since starting Promacta in January. I do notice it is letting up for a good bit when I drink coffee, but it has been coming back a couple of hours later and bugs me on and off even when I lay down to go to sleep...it kind of feels like by laying down, I’m cutting circulation off from the base of my head at the neck and I feel the throbbing :/ And I’ve been taking Tylenol, but it hasn’t really done much for me and I’m hesitant to take it too often if it’s not even helping. Also been laying my head and neck on a heating pad and that helps a bit as well! But I can’t stay stuck on it all day so I’ll see what the nurses at my hemo’s office say...I will definitely keep you all posted though, thanks so much!
So, I called my hemo’s office who told me NOT to take aspirin as it lowers platelets...I informed her since I had nobody to call last night and I couldn’t function with the pain, I ended up taking half a tablet of regular strength aspirin and the nurse told me only Tylenol going forward. The good news is my headache is now gone after last night. I decided I’m comfortable enough to just wait until Monday for labs to see how my platelets are doing and go from there! I will keep posting updates as I get them, thanks for all who have replied w/ advice and articles, I appreciate it!!
How scary. I had counts like that once while on Nplate and had to inject myself with an antithrombotic drug called Tinzaparin every day for a week. The doctor was far more concerned about the high count than the low counts that I often get so you do need to stop the Promacta and put up with any crash that may follow.
JJ yeah, I definitely did not realize the severity of things at high platelet levels...I just never thought I’d go through it, honestly. And yes, as soon as my hemo saw the 490K count he told me to stop taking the Promacta, which of course I did! I’ve been pain free for a couple of days, so my guess is my platelets have definitely gone down since. I don’t think I’ve crashed because I feel ok, thankfully...I was really scared (but mentally prepared) to deal with a crash. Now I’m trying to keep myself busy so I don’t get anxious thinking about Monday labs :/
Carcamoc, for my own experience Aspirin works very well with Promacta. I shoot for using the less Aspirin the better. That is, at the very first sign/feeling of any possible clotting (head or leg), I take either one low dose Aspirin, or, half an Excedrin clone (aspirin/acetaminophen/caffeine). 81mg of Aspirin for the former, 125 for the later. If that doesn't fix it, and it usually does, after an hour I repeat. Then if that doesn't do it, one is likely stuck and nothing will help, right away.
Remember talking about 'micro-particle platelets'? When it comes to headaches and Promacta I think about micro-capillaries, blocked by micro-particles, which cause headaches. (ITP is just a barrel of fun isn't it?) If one doesn't nip the problem in the bud early, I suspect the affected brain cells are toast... kaput... fini. In this case, the headache will go away after a couple of days.
You might never have the problem again. Just a FYI.
Hal: I hope not to have that problem anymore, but I must say that half of an aspirin really went to work right away, I was so thankful. Obviously I don’t plan to use aspirin long term, so I’m not sure if the nurses misunderstood my question but oh well...it was too late at that point and it had already worked its magic lol!!
In any case it didn’t seem to drop my platelets because I’m at 230K right now after stopping Promacta last week I’m very relieved to not have crashed and hemo instructed me to restart the Promacta at 100mg, which I will do tomorrow morning. Hoping for a much smoother ride this time around!!
So, I haven’t been in for labs yet, it being the weekend and all...but I am feeling extra crappy to the point I’m sure I’m low again. I have petechiae scattered throughout my body (making it harder to spot vs the clusters, which I have one of currently on my shoulder), my mouth is full of blood blisters of varying size, and my energy is completely depleted...I figured it makes sense since this is just the delayed response to me taking a break from the Promacta, right? Anyways, I guess I should consider myself lucky since I have no bleeding...I do have a bunch of rescue prednisone but was instructed to take it ONLY in the event of bleeding to avoid going into the hospital :/ I haven’t seen my other hematologist in a while, the one whose idea it was, so I haven’t been able to get his thoughts on how to use it (dosage, days, and if I can take it even before bleeding) That being said, I am in no rush to take steroids. And chances are by the time I get in for labs on Tuesday, I might be doing better so I’m trying not to overthink this crash!!
Oh blah. I think I would be tempted to be a 'bad' patient and go back to 150mg on those symptoms.
So in an effort to not repeat the same count situation(s) again (aka lather, rinse, and crash), what is a good idea to do differently and keep it (rise from 5, record high counts, then crash) from happening again? Go to 100mg or 125 when one gets a 200+ count, instead of continuing with 150mg? Recall Promacta dosing rules.
Also. How many days was the break from Promacta? Wouldn't it be best not to go that long again? Best to work towards not taking a break and just lower the dose a bit?
From previous conversations/experiences here, it's probably best to *never* take a break from Promacta for even a day (for row 1 or 2 folks). A day is all it takes to, shall I say, 'windup' the immune system destruction machine. With super high counts a break might be possible, but never seems to work with lower counts - perhaps sub 200 or so.
Hal I took a 7 day break from Promacta, so yeah that definitely was quite a bit! I do think since we’ve had higher counts at this high dosage that we can try lowering the dose vs. stopping & maybe having better results! I guess I somewhat expected there to be a consequence for going medicine free for days, but I really wanted to hope it wouldn’t happen (where are you remission?? Lol) Oh well, no major bleeding & hopefully tomorrow’s labs look decent (anything above 20K would be awesome). Wish me luck!
Aaaand platelets were at 5K which is crazy because I felt a lot better that day than over the weekend, so I’m wondering where I was at then! Both hematologists told me to go to the ER...they were very nervous about me refusing to go, which I understand because they’re just being cautious but yikes...no thank you. I haven’t had any bruising or wet bleeding so I just don’t see why I need to go to get IVIG and a platelet transfusion! Not to mention I feel like I need so much rest and that is the last thing I do at the hospital, I always feel worse afterwards lol!! The plan for now is go back up to 150mg on the Promacta and up labs to twice a week, so I’m going in tomorrow for another one, which hopefully will be at least over that 10K mark!!
Hal: Hemo thinks my ideal dosage is 150mg...Friday’s labs were up (from 5K on Monday) to 54K...and yesterday I was at 97K...so it is working really well. And quickly. I actually mentioned to my doctor I’m scared of shooting up too high again...he said if I start to get those throbbing headaches again to go in immediately for a CBC and depending on the results stop the Promacta for A DAY(he concedes a week was far too long for me) and then start taking it again at 125mg and see how I do at that dosage. He seemed pretty confident that we have finally found our ITP hack lol, but we’ll see! I’m hoping for the best and I’m glad I knew my body well enough to know I was getting better and just needed to rest to give my body a chance to get back up there!!
Ok, I see that I'm more optimistic on dose than your doctor. Going down 25mg to 125 would follow the dosing rules but I think that too will prove to be too high of a dose. Was it just two weeks on 150mg for that ~500 count, or longer than two weeks? Good grief. That gives me a headache just thinking about that count, LOL.
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