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TOPIC: Need Advice Please :(

Need Advice Please :( 3 weeks 1 day ago #66456

  • Carcamoc10
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Hal, no I’ve never heard of a dosing pack :ohmy: 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 :(

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Need Advice Please :( 3 weeks 1 day ago #66458

  • mrsb04
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Why not ask your haemo for a script for pred 5mg tabs than you could just bolus yourself for a few days at whatever dose you think might be required.

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Need Advice Please :( 3 weeks 1 day ago #66459

  • Carcamoc10
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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!

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Need Advice Please :( 3 weeks 16 hours ago #66461

  • mrsb04
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Initial Prednisolone dosing on first diagnosis was 1mg/kg. However as a rescue remedy my haemo suggests 10-15mg for a couple of days then decrease by 5mg every couple of days
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Need Advice Please :( 2 weeks 6 days ago #66467

  • Carcamoc10
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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 :unsure:

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Need Advice Please :( 2 weeks 6 days ago #66469

  • Hal9000
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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!
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Need Advice Please :( 1 week 6 days ago #66501

  • Carcamoc10
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Quick update: down to 13K...no bleeding symptoms so hemo is comfortable keeping me out of the hospital. Promacta dose was increased to 125mg in light of this crash!

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Need Advice Please :( 1 week 5 days ago #66503

  • Hal9000
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This Promacta experiment is very interesting Carcamoc. Can Promacta begin to work at higher than previously tested levels?

Would it be safe to say that you're experiencing no side effects from Promacta? Or, just some minor digestive issues? Fingernails growing faster than in the past?

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Need Advice Please :( 1 week 5 days ago #66505

  • Carcamoc10
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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!!

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Need Advice Please :( 1 week 4 days ago #66510

  • poseymint
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The dosing instructions created by the manufacturer of Promacta, Novartis state that for ITP the dose should not exceed 75mg. I think you are aware of that but just wanted to make sure you know the risks and know that your doctor is not following dosing protocol by giving you 125mg.
www.pharma.us.novartis.com/sites/www.pharma.us.novartis.com/files/promacta.pdf

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.

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Need Advice Please :( 1 week 4 days ago #66512

  • Carcamoc10
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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!

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Need Advice Please :( 1 week 3 days ago #66516

  • mrsb04
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I would hope your liver function is already being monitored at least monthly. Over here in UK it would be increased to fortnightly whilst dose is being increased

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Need Advice Please :( 1 week 3 days ago #66522

  • Hal9000
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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.

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Need Advice Please :( 1 week 2 days ago #66525

  • Carcamoc10
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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!

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Need Advice Please :( 1 week 5 hours ago #66531

  • Hal9000
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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.
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Need Advice Please :( 6 days 5 hours ago #66539

  • Carcamoc10
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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!

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Need Advice Please :( 6 days 1 hour ago #66541

  • mrsb04
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70mg for 7 days. I would be psychotic if I took that much. !!!
Do you bleed much when your count is low?

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Need Advice Please :( 6 days 29 minutes ago #66542

  • Carcamoc10
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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 :(

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Need Advice Please :( 5 days 15 hours ago #66545

  • mrsb04
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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.

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Need Advice Please :( 5 days 15 hours ago #66546

  • Carcamoc10
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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!

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Need Advice Please :( 5 days 5 hours ago #66551

  • Hal9000
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49? Yes! Cha-ching, cha-ching.

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?

Ha, you're on Promacta now. Who needs steroids?

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Need Advice Please :( 5 days 38 minutes ago #66555

  • Carcamoc10
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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!

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Need Advice Please :( 4 days 22 hours ago #66556

  • lurpelis
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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.
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Need Advice Please :( 3 days 7 hours ago #66567

  • Hal9000
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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?

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