Hal, no I’ve never heard of a dosing pack but I’m assuming my hemo will bring it up in a couple of weeks when we talk to him about the new plan! If he doesn’t bring it up, I will, just cuz I feel like I need to try something new with my crashes. I do feel like my body, given the opportunity, raised counts after some days on its own! There was one specific time last month I was down to 15 and refused to head to the hospital or do anything and by the following week, I was at 44! So I’m definitely over all the IVIG treatments by now
Mrsb04: Yeah, that’s pretty much what I want to try, but how do I know what the right dose is? Is it based on my weight? Symptoms, etc? Don’t worry, I’ll check with my hemo as well, just wondering how other people here do it!
Just wanted to update, I am extremely surprised platelets are back down to 71K...not a bad level to be at, definitely. And I’m going to assume the higher dose of Promacta at 100mg is just taking a bit to kick in
At the same time, that particular IVIG didn't seem to work as well at the start too. One would certainly expect Promacta to work soon.
From a symptom/bruising standpoint, I really like being around 65-70. At that level, I don't feel threatened about the possibility of a clot.
Just for fun (we all have our peculiarities), I was looking over someone with a 3/4 row split (steroid response was flat line) that was getting 90-100 on IVIG with 75mg Promacta. Eventually, they needed a 5 Nplate dose (alone) for a 50s count. In that case, the IVIG+Promacta response was an unusual 4-5 weeks long - a clear indicator that row 3 was involved in the mix. Conversely, your good steroid response and 2 week IVIG response is consistent with row 1.
So many folks this year on high doses of Promacta is crazy!
Hal: definitely interesting...I don’t even mind testing out these dosages because I don’t have any other health issues and I’m hopeful they can make a difference! I only started today with the 125mg dosage, but the 100mg has been well tolerated! No side effects that I have noticed...I haven’t had any noticeable change in stomach issues (I’ve always dealt with a few things here and there, but no more now than in the past) My fingernails have always grown extra fast, so it hasn’t made a difference in their rate of growth!
Anyways, I’m going to be going back to twice a week labs in the meantime...gonna go in on Monday for labs then meet with my hemo on Thursday, have labs drawn then too. Hopefully I’m up over 20K by then!!
Some of the side effects of these drugs are silent. Big side effects of Promacta are liver toxicity, cataracts, blood clots with both Nplate and Promacta. And they both can cause bone marrow reticulin which is a kind of scar tissue in the bone marrow. That said, hope you find a successful treatment! And great you are staying out of the hospital when counts are low, that makes everything so much better- good for you for negotiating with the doctor.
Poseymint: Yes, I’ve read about the possible side effects of Promacta & my hemo was actually not going to go above the dosing protocol until he spoke to my other hematologist who sees more difficult cases here in Houston. That hematologist recommended going up to 150mg if needed because he has had experience dosing itp patients at those numbers. They’re going to be testing liver enzymes every 4 weeks, also! Obviously I would prefer to not have to take this much medication or any at all, but I’m currently trying to break out of the IVIG cycle I have been in since my diagnosis in December :/ If this high dosage of Promacta fails to keep me stable, I myself will ask my hemo to move on to the next option! For now, I think we have a better arrangement...he has heard me out about staying out of the hospital and has given me his cell phone number to reach him in case of an emergency, so I am very thankful to have his support!
Carcamoc10 wrote: ... my hemo was actually not going to go above the dosing protocol until he spoke to my other hematologist who sees more difficult cases here in Houston. That hematologist recommended going up to 150mg if needed because he has had experience dosing itp patients at those numbers...
Oh, excellent. A hematologist with 150mg high dose Promacta in his bag of tricks is a nice asset. For example. Some folks (row 4) only respond to IVIG and high dose Nplate (and maybe Cyclosporine). Problem is, a fraction of them go on to develop antibodies to Nplate and the drug becomes useless. Then, only IVIG works. But if 150mg of Promacta could work for them instead, that would be a game changer for a significant number of ITPers.
Hal: I love that he’s willing to try to think differently & most importantly, that he has experience with persistent ITP. Husband has told me he is NOT comfortable with me increasing to 150mg because he feels like if Promacta was going to work for me, it would have already. I don’t mind going up to 150mg, but it’s worth a conversation with the hemo to see what the next option would be.
Poseymint: my liver enzymes had been getting checked, but I don’t recall being told how often. I just got them checked yesterday though and have an appointment with my hemo on Thursday, so hopefully I’m still doing ok!
I am back up to twice a week labs so had them done yesterday. Up to 18K from 13K on Thursday. I’m not happy, but at least I’m not under 10K!
Isn't that about double baseline count? Sounds good to me. The 150mg is 'unchartered territory' - and from the individual's standpoint, is always the case with ITP treatments. Some things work and others don't. The possibility of high dose Promacta becoming an option is intriguing at the least.
Hal: my levels have moved around so much, I have no clue what my baseline is haha...but being on 125mg has gotten me up to 49K, so I’m really hoping we have turned a corner! Hemo says liver function and everything else is perfect. In the event of another crash below 20K, I will increase to 150mg. He has also prescribed me some prednisone in case I have any bruising or bleeding in one of these crashes so I can stay out of the hospital! He said we could do 70mg for 7 days, and taper off sooner if we can!
Mrsb04: I thought that sounded a bit crazy, but he used the recommended formula, so I was like okkkkk...what I definitely did not expect was to take it for a week! And no, I have only had wet bleeding once and it was minimal...he did say I should wait for his direction to take it, so I will not be using it at my discretion! Unfortunately being on Promacta has messed with the symptoms I get when I am low and I need to learn my body all over again
Diagnosed in 2014. I'm also a renal specialist nurse
Thank you received: 306
being on Promacta has messed with the symptoms I get when I am low
Interesting, how exactly? Until I took Promacta I was always aware when my count was below about 30, freezing cold and very tired with horrid bruising.
Now I have no idea. Bruises last about 3 days then disappear and I do not get the coldness.
Mrsb04: I have a lot less bruising and petechiae...back then I would take those symptoms to mean I was under 20K. Now I usually get that at under 5K. I used to never bleed, menstruation aside, but now if I get low enough I will have some bleeding while brushing my teeth or if I pick at anything on my skin! Fatigue is no longer a good indicator of my platelet levels...I have been proven wrong a few times when I guessed I’ve been low and turned out to be ok!
I remember one person here whose doctor refused to prescribe Pred to her. Doc was perfectly happy prescribing a Dex pulse, but Pred, won't do that. Her counts would oscillate wildly with each simultaneous Dex and IVIG treatment. She finally went to her regular doc and got a Pred prescription. The oscillations stopped immediately and raised the floor to one above danger. Just a FYI on doctor peculiarities. Maybe your doctor isn't familiar with how to treat for less than 7 days or less than 70mg? Maybe ask him if something 'brief' like a 'steroid dose pack' would be a good thing to try - even though those aren't really intended for someone with ITP?
Hal: I’ve been wondering if there’s a way I can question his directions for the steroid without coming off as a know it all patient or an “I read on the internet that...” patient haha! If I get the alert that I am low and need to start the prednisone I will specifically ask either the nurses or my doctor if there’s an option for a few days instead of a full week!
You know yourself better than anyone, including your doctor. Sometimes, just because dosing guidance says to use "X" doesn't always mean that's right for you. A good doctor will either agree with you and be willing to try something else, or give you good reasons to keep on the current course of treatment.
Carcamoc, IMHO asking questions, rather than stating answers is a good way to go. With that, one thing can follow another. Asking if a steroid dose pack is suitable for someone with ITP can get the ball rolling. Structure questions so that the eventual conclusion comes to his own mind without you stating it. I guess they call it 'the power of persuasion'? One can by sly about it. For example, don't be talking about your potential need for steroids at the time. Ask about what a dose pack is out of the blue.
How about that?
Unfortunately back down to 15K I really was hopeful I was going to stabilize, but here we are again in the cycle. I’ve noticed my platelets go up for 2-3 weeks and then crash no matter what. Haven’t done IVIG since Easter, so that doesn’t come into play this time! Have an appointment with hemo on Thursday and I suspect we will have a lot to talk about...
mrsb04: You actually might be right because I woke up today feeling really under the weather. Hopefully I start feeling better soon, though, because I have a 9 hour road trip planned this weekend to Florida for my little one’s birthday. I will discuss with my doctor tomorrow, but I really don’t want to have to cancel. So far no bruising or bleeding, so I am thankful for that!!
Carcamoc10 wrote: Unfortunately back down to 15K I really was hopeful I was going to stabilize, but here we are again in the cycle. I’ve noticed my platelets go up for 2-3 weeks and then crash no matter what. Haven’t done IVIG since Easter, so that doesn’t come into play this time! Have an appointment with hemo on Thursday and I suspect we will have a lot to talk about...
Right. So the question becomes whether to continue the same dose, or, go up a notch, yes? Or how about, only go up if symptoms appear? I dunno.
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