Update: Lowering Promacta to 100mg a day...platelets shot up to 372K on 100/150mg alternating dosage. I suspect next week’s labs will also show an increase, as I’ve noticed it takes about a week for me to see a response in changes to the dosage! Also, thanks to the people who gave me tips for labs...I am now at least confident I am doing everything in my power to make things go smoothly. So far so good
Carcamoc, they tell me my veins are easy. Still, I have said to them to 'get creative' on a draw while showing recent heavily used spots.
Yes, a 'typical' Promacta response takes 2 weeks to see full effect on platelet count. One can leverage that fact to estimate dose increases/decreases. For example, after a dose change and one week has elapsed, the platelet increase for that week can be a good estimate of what next weeks increase will be. Nplate is different - as Posey mentions.
A 372 is pretty scary to us all. With Aspirin handy, I'm a lot less worried. Just try to be proactive with it. A little bit early on in a headache or leg cramp, goes a long way.
Up to 780K, scary indeed. I’m now stopping Promacta until further notice and I’m supposed to be getting a phone call from the nurses telling me to come in for another CBC soon...perhaps to make sure they haven’t gotten closer to a million..? Idk...what do they do if they’re this high or higher? Do they have to intervene? I’m so confused, I’ve never been up this much, which is crazy because I wasn’t taking a full 150mg a day anymore...was down to 100mg a day since last Wednesday so I realize it might take a couple of days to see them come down!
Mrsb04: No headaches, just fatigue this time around. And we’ve had the theory of my cycle playing a big part in my crashes, but I haven’t had a crash since...early June I think..? It’s like all of a sudden my body is reacting the way a normal ITP patient’s would to Promacta!! Husband asked if it’s possible the Rituxan that I did in March could’ve finally kicked in and I wasn’t sure. I wouldn’t think so, just because I’ve seen it takes up to 3 months and this is a bit past that point but I’m also hoping that is not it. Any thoughts on that? I’m due back in tomorrow for another CBC since they want to monitor the high counts, I’m hoping they’ve come down at least a little & then we can maybe start to see how my body has done on the 100mg a day...
Carcamoc10 wrote: Mrsb04: ...
It’s like all of a sudden my body is reacting the way a normal ITP patient’s would to Promacta!!
LOL, 'normal'. For me, I've wondered if you've been normal since the time when you stopped Promacta and counts continued upward after checking a few days later. Very unexpected. That's why I agreed with Anne and the 50mg dose she suggested then. It could be 50 to 75 is going to work, IMHO. Since you didn't ask, LOL, I'm going to guess you'll need 25mg after a few months. Row 2 remission with row 1 left over as the issue. Heck fire, for all I know, you only need 12 to 25mg now. Those counts aren't holding back. Very high.
Hal: I can only hope I’m turning into a horse lol! I definitely see the possibility of ending up on a muuuuch smaller dose but I don’t want to get ahead of myself...I’m actually listening to the doctors as they try bringing the dose down gradually. I guess it’ll be interesting to see where I’m at today...I’ll post the update when it gets posted to my patient portal tomorrow!
Ok, so up to 801K...which makes me question why they even made me go in so soon as I could’ve told them there was gonna be no major change -_- But I guess that’s fine, it gives me some insight to any symptoms I get over the weekend. So far, the only thing I’ve felt at times are pains in my veins but they go away very quickly so it hasn’t worried me as much. Now I’m thinking about how long I will go without Promacta this time...last break was 2 weeks before my body got down to the 200Ks, so we will see...
Mrsb04: I am not...nurses were adamant about not taking it and I recently messaged my hemo about it and he said not to add anything into the mix right now. But I keep being observant about anything that can pop up!
Carcamoc10 wrote: Hal: I can only hope I’m turning into a horse lol! ...
They think you are a zebra and need to start at a high dose and work down from there - an all or nothing response. As opposed to a horse, which starts out at 50 mg and goes up or down from there.
Is doctor talking about going to 100mg next? Wasn't last dose alternating 100 and 150 for a 125mg average?
I know this would be extreme thinking for your doctor, but how about 50mg every other day once you get to a 200 count and see what happens? If he has pictures of zebras hanging on his walls leading to his office, that would explain it all.
Hal, I think you’re right about their feeling that I’m an all or nothing case because they’re going backwards from the high dose, so yes, the 100mg a day would be our next dose! I’m still currently holding off since last week’s labs were at 471K. I went in today as well and should know by tomorrow whether to continue holding or start back up again. Also have an appointment with regular hemo on Thursday and I’m going to ask about the possibility of the Rituxan I did in March finally kicking in...I know it’s not very probable, but it’s worth taking into consideration since I haven’t had a monthly crash since June!!
As far as the 50mg every other day, I think it would take him a while to want to try that out since he has that mentality of not wanting to mess with what has brought my platelets up. Both hematologists still believe high dose Promacta is the ticket, although things very well could change and I’m hoping to end up on a smaller dose eventually. It is getting very frustrating to have to keep stopping despite lowering the dose, but I also realize I’m lucky we finally got platelets to stop crashing every month.
Blah. I guess I've attributed your recent improvement to row 2 Flu virus or similar. Haven't been thinking the improvement was because of row 1 or similar - which responds to Rituxan. In that case, that might leave you with row 4 megakaryocyte issue as a lingering issue and thus a 75mg or so Promacta response. As they say, 'ITP sucks'.
On 50mg every other day. I guess if your doctor is calculating when to restart Promacta on the rate counts fall when not taking it, that would make taking anything a bad idea for him.
With 100mg coming up, getting closer to a long term answer. Cheers to a lot less needle pokes !
Hal, so I’m down to 217 this week and I was instructed to restart Promacta @ 75mg yesterday, then today was told by hemo to go down even further to 50mg and then recheck platelets on Monday. He says he has a gut feeling I will go up above 200 by then and if so, we will hold and recheck later in the week, then begin again at 25mg when I come down enough. He says he doesn’t want to give my body the chance to climb back up to the 800Ks, which I agree with!
Also, he didn’t dismiss the possibility of the Rituxan having some sort of effect, but that he feels like my system is more or less figuring it out (with the help of Promacta, obviously) He is also saying it’s a possibility I might not even need to be on any meds if we keep decreasing and my counts stay anywhere above 30K on their own...I can only hope, but I’m glad we’re getting closer to figuring it all out
Oh excellent. Finally, a change of mind. Hopefully this will be the end to high risk of a clot. 800+ count, just makes me want to cringe.
Not being on any meds? Looks like that was his unswerving motivation towards high dose Promacta. Hope it has paid off.
Aren't you taking Probiotics? Lately, I've been taking Caprylic acid, garlic capsules, some coconut oil, and a little more Probiotics than in the past. The purpose was to target Candida/fungus/yeast. In a couple weeks I will find out if any of that has helped with counts.
Hal: yes, I was so surprised at the change of heart! As far as probiotics, I only took them for a month a while back and did not see a change in platelet levels, so haven’t really done them again since. What I have done since is start taking a vitamin B complex and a separate vitamin D complex. Again, not really sure about the effects that could have had on my platelets, but I did it more to help with not getting sick and having a better mood/energy level!
Mrsb04: I am ecstatic about the 50mg...I’m really hoping I can hold on with it or maybe even jump down to the 25mg in the future!
Platelets this week have remained at 217K, surprisingly!! Not sure whether to expect an increase in next week’s labs, but we will see!
Was your D level tested and found to be below the low norm? A lot of people with autoimmune disorders are low in D. All I have read is D helps with the immune system if one has a D deficiency. I was well below the low norm in D and had to take a large amount only 1x a week for a while and then got into range.
"Instead of wasting your time worrying about symptoms, just get it checked out" -Nieca Goldberg, MD
Mel: That makes sense! No, I wasn’t told I was vitamin D deficient...I’m not even sure they’ve ever looked into any vitamin deficiency. I could always ask the hemo about whether taking them is ok for me!
Diagnosed in 2014. I'm also a renal specialist nurse
Thank you received: 314
My vit D levels were way down when they were tested (amongst a million other things) I had when first diagnosed with ITP.
I've been on supplements for 5 years. My haemo started me on a bolus of 40000 units twice a week for 3 months then 1000 units a day. My osteoporosis specialist upped it to 2000 units a day about 18 months ago. I still only just manage to scrape a satisfactory level despite supplements, eating Vit D foods and getting as much sunlight as possible. Winter is coming so I can see my dose being upped again before much longer.
Mrsb04 wow, that sounds like a serious deficiency! And I actually just had switched a 1/day Women’s multivitamin to the super B complex and the separate vitamin D to see if I would get anything out of it since my energy was still lacking, even with platelets being higher lately! Also I used to get sick an insane amount of times, so figured I should include Vitamin D for that reason. I actually haven’t gotten sick since earlier in the year, so it could be helping..? I will definitely ask my hemo if that’s ok for me to be taking though, since he only knew I was taking a women’s multivitamin...
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