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PROMACTA TREATMENT 14TH OCTOBER 1 year 10 months ago #68446

  • GrouchoMarx
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Yes. I read this argument in this forum a lot. I assume counts over 50K basically means normal life.

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PROMACTA TREATMENT 14TH OCTOBER 1 year 10 months ago #68448

  • mrsb04
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Groucho
Your count is exactly where it should be.

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PROMACTA TREATMENT 14TH OCTOBER 1 year 10 months ago #68449

  • MelA
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I don't know if it is an "argument" Groucho - it is just that a quick increase can be dangerous.
Platelets do clog blood vessels - and even with ITP after our names we can still have that happen to us.

To be honest with you I never stopped living my normal life after diagnosis.
Sounds like you are doing great!
"Instead of wasting your time worrying about symptoms, just get it checked out" -Nieca Goldberg, MD

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PROMACTA TREATMENT 14TH OCTOBER 1 year 9 months ago #68457

  • ecoclayton
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These numbers make me want to try Promacta. I will be returning to the Dr in a few days to check counts that were at 38 less than 2 weeks ago. If they are below 30, I am sure the Dr will want to try something. She even suggested looking at Doptelet last time.

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PROMACTA TREATMENT 14TH OCTOBER 1 year 9 months ago #68459

  • GrouchoMarx
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MEIA,
It seems the "normal life" depends a lot on the doctor you get and how much he or she scare you :) If I would have get someone saying:"You have a benign disease not much to worry about..." It would all have been different.

Ecoclayton,
It still too early for me to be completly optimistic but there is one strong point Promacta might have according to comments in this forum and is "stability". I dont need to have counts over 100, not even close to it if it has random deep drops time to time for unexpected reasons. I prefer to be steady over 50s. all year long. There is something a bit paraonic in ITP and is it due to to the uncertainity of the counts. It seems promacta keep you steady at certain level and you might end up just needing to test your blood 3 or 4 times a year. And during those months that you are not having tests your know that most probably the count is ok (except in my case if I catch a cold). Even when i had a cold my drop was over 30s what still isnt that bad.

Good luck and keep us posted

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PROMACTA TREATMENT 14TH OCTOBER 1 year 6 months ago #69097

  • GrouchoMarx
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Hello everyone.
My count on 75mg brought me to a 96K platelet level. Doctor wants to reduce the dose 75/50/75/50 cycle from now on. A good news. I hope with the time I will lowering the dose much more. Crossing fingers
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PROMACTA TREATMENT 14TH OCTOBER 1 year 6 months ago #69106

  • mrsb04
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Good news Groucho.

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PROMACTA TREATMENT 14TH OCTOBER 1 year 4 months ago #69433

  • GrouchoMarx
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In case of use. After 5 weeks on a 75/50 mg promacta my count went down from 96K to 30K. Resumed 20 days ago the 75mg daiky and it went up to 62K.
It seems 75mg it is for me.

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PROMACTA TREATMENT 14TH OCTOBER 1 year 4 months ago #69505

  • Hal9000
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In case of use. After 5 weeks on a 75/50 mg promacta my count went down from 96K to 30K. Resumed 20 days ago the 75mg daiky and it went up to 62K.
It seems 75mg it is for me.

Groucho, from what I've seen around here, those that respond to steroids do best (better consistency and response) when the Promacta dose is the same each day. When alternating doses come into play, instead of counts being an intermediary fraction, it seems counts will tend closer to the lower of the two doses. That is in your case, a 75/50 split may yield counts similar to just taking 50 everyday. Further, a 75/75/50 split might do a better job at getting counts just under 96. Things can change though. Maybe 75 mg needs some time?

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PROMACTA TREATMENT 14TH OCTOBER 1 year 4 months ago #69545

  • Margaret k
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When I was on 75mg daily and wanted to reduce what worked for me was to reduce the weekly total by only 25mg at a time every 8 weeks. Slow, but I stayed stable , no big dips. It took me about 3 years to go from 75 mg daily to 25 mg daily. I am now stable at about 120 on 25mg 6x week.
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PROMACTA TREATMENT 14TH OCTOBER 1 year 4 months ago #69547

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Txs Margaret, very useful information. Well noted!

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PROMACTA TREATMENT 14TH OCTOBER 1 year 2 months ago #69805

  • GrouchoMarx
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Hello all,

My Promacta journey is as follow:

- 14.10.19………………43000 Esp (50mg Revolade from today)
- 17.10.19………………19000 Esp (1 Dex today)
- 24.10.19………………35000
- 28.10.19………………17000 Esp
- 31.10.19………………23000 Esp
- 01.11.19………………25000 Esp
- 06.11.19………………42000
- 11.11.19………………35000 Esp (75mg Revolade from today)
- 21.11.19………………44000
- 02.12.19………………50000
- 20.12.19………………70000
- 23.12.19………………44000 Esp
- 03.01.20………………35000 Esp
- 09.01.20………………32000 Esp
- 20.01.20………….......62000
- 07.02.20…………...…63000
- 17.02.20………………59000 Esp
- 30.04.20………………80000
- 09.05.20………………96000 (dose reduced to 75/50)
- 20.06.20 ……………...30000 (dose increased 75)
- 13.07.20………………62000
- 06.08.20………………56000 Esp
- 24.08.20………………40000 Esp
- 08.09.20………………22000 Esp
- 14.09.20......................26000 Esp

No bleeding, no symptoms. In fact I never had them. I found my illness during a check up.

After all the reading, I want to continue with Promacta in spite of my doctor saying isnt doing anything and proposing Rituxan.

I believe there is a permanent rollercoaster, even with promacta, but with higher numbers, both in the peacks and in the valleys.

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PROMACTA TREATMENT 14TH OCTOBER 1 year 2 months ago #69806

  • GrouchoMarx
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Btw these were my numbers without any medication.

- 18.12.18....................39000 (Dex pulse finalized 10th December)
- 03.01.19....................43000 Esp
- 10.01.19....................74000 Esp
- 18.01.19....................43000
- 28.01.19....................55000
- 08.02.19....................39000
- 19.02.19....................35000
- 01.03.19 …………….34000
- 18.03.19……………..29000
- 01.04.19……………..43000
- 17.04.19……………..50000
- 25.04.19……………..27000

That's the part that makes me doubt.

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PROMACTA TREATMENT 14TH OCTOBER 1 year 2 months ago #69807

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However, immediately before starting promacta, my counts were the following;

- 16.09.19 …………….14000 Esp
- 19.09.19……………..108000 Esp (4 Dex started 17th September and ended 20th Sep)
- 26.09.19……………...47000
- 10.10.19……………...28000 (1 Dex Today)
- 14.10.19………………43000 Esp (50mg Revolade from today)
- 17.10.19………………19000 Esp (1 Dex today)
- 24.10.19………………35000
- 28.10.19………………17000 Esp
- 31.10.19………………23000 Esp
- 01.11.19………………25000 Esp
- 06.11.19………………42000

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PROMACTA TREATMENT 14TH OCTOBER 1 year 2 months ago #69857

  • GrouchoMarx
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Another 25K today. It has been steady for a month, 22k, 26k, 25k.
No bleedings, no signs but far too low to consider that promacta is working.
I reached 96K in a particular moment, but most of the time Promacta kept me well above 40k, most often from 50 to 65 K. Can it suddenly stop working?

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PROMACTA TREATMENT 14TH OCTOBER 1 year 2 months ago #69858

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I

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PROMACTA TREATMENT 14TH OCTOBER 1 year 2 months ago #69866

  • Reefer AL
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Wow. Promacta was an intense roller coaster ride for me. I'm back on n-plate and happy. Best wiahes

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PhanksROMACTA TREATMENT 14TH OCTOBER 1 year 2 months ago #69869

  • GrouchoMarx
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Thanks, i will see with my doctor.
Isnt the same principle?
Can we tap off Promacta and start Nplate right away?

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PhanksROMACTA TREATMENT 14TH OCTOBER 1 year 2 months ago #69878

  • GrouchoMarx
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Thinking over the posible causes of my lowering of the platelets as hypothesis, I came to 2 good ones:

1 - the protein powder I started to take one month ago.

I came to this article.
scialert.net/fulltextmobile/?doi=jas.2010.991.995

It basically conclude that not much changes in blood parameters due to powder proteins but if you look closely at the graphic (table 2). Healthy people went from an average of 236 K to 162 K.
The drop Isn't a concern for people with no itp but it actually represents an average drop of 31% platelets. If you are barely on your 40K a 31% drop on platelets put you on your 20's.

2 - Novartis might have different properties in its promacta pills depending on the country of production. It just happened that the big climbs 80k and 96K happened with pills bought in a particular country. I grant you it could be a coincidence. I work on a hypothesis. I will try to get my hands on these particular pills sometime this year and try for a month.

Obviously, it could simply be explained by the rollercoaster but maybe something also is pushing the roller :)

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PhanksROMACTA TREATMENT 14TH OCTOBER 1 year 2 months ago #69879

  • mrsb04
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I think you are on a sticky wicket with point two Groucho. The generic drug is Eltrombopag which will be in it wherever in the world it is manufactured. www.fda.gov/drugs/questions-answers/generic-drugs-questions-answers

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PROMACTA TREATMENT 14TH OCTOBER 1 year 2 months ago #69880

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Hypothesis...
We still ask today about where was a particular car model built. The same model built in Germany has more appeal than the one built in ............X country. Why? Illogical? Maybe. I can tell you that when I switched tablets from one country of production to another, I felt dizzy and sweaty at 5 am the morning next day. Something that never happened before. A coincidence?

Hypothesis, I might be perfectly wrong of course.

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PROMACTA TREATMENT 14TH OCTOBER 1 year 2 months ago #69881

  • mrsb04
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Maybe the excipients were slightly different. What countries of production did you try?

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PROMACTA TREATMENT 14TH OCTOBER 1 year 2 months ago #69882

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As mentioned it could be the protein powder, or the coffee, the beer, the artificial sweetner or even the different lab machine....

The one allegedly less efective is produced in EU and the allegedly better one in Turkey. All said it might simply be due to other factors.

From my side I stopped protein powder, drink very little and go easy on artificial sweeteners. To top it I will change lab. Since I dont have bleedings the next count will need to wait one month.

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PROMACTA TREATMENT 14TH OCTOBER 1 year 2 months ago #69883

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Fillers in the generic - are they the same for all brands of generic med
"Instead of wasting your time worrying about symptoms, just get it checked out" -Nieca Goldberg, MD

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PROMACTA TREATMENT 14TH OCTOBER 1 year 1 month ago #70157

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Today i ended up my promacta journey by my doctor decision. Almost 2 months with a 26K steady in all counts discouraged my doc. Back to square 1.
I will have a bone marrow biopsy to Rule out fibrosis. Then I will give a try to Nplate. Last try before confronting Rituximab or Splectonomy.
That's all folks for this thread

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PROMACTA TREATMENT 14TH OCTOBER 1 year 1 month ago #70158

  • karenr
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My Promacta journey hasn't been a very happy one lately either, though my hema hasn't suggested we give up on it yet. I was hoping that my 4 months on antibiotics had interfered, but I've been antibiotic-free for a couple of weeks now, and yesterday my platelets were 13K--and they'd been in 20s or below all month. AND I'm on 9 mg of prednisone too. But I've already had a failed splenectomy and rituxin, so those aren't options. My hema is doing a bone marrow biopsy next week too. I also have other scary numbers in my CBC. Hope Nplate works for you.
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PROMACTA TREATMENT 14TH OCTOBER 10 months 4 days ago #70601

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Hi Karen,

keep us posted on your evolution.
I will be back to Promacta (Revolade here in Europe) from next monday when the medication arrives.
The effect of Revolade dropped to the middle 20s this summer, but together with the average high platelet volumes I have, I might realistically be around 30K. If this is my bottom line with Promacta, thats isnt that bad after all, considering that 10 days after i discontinued it my level dropped to 11K.
Revolade doesnt give me any side effect andit managed to put me once close to 100K. My marrow bone biopsy showed a good production of platelets.
The doctor will add 5mg of prednisone from now on and let's hope the levels jump a bit, just to have some more margin.
5 weeks after a 3 days dex pulse my levels on Revolade were 42K. The doctor isnt sure the increase was due to Revoalde or the inertia of the Dex pulse.
My Revolade journey continues then. I will keep you all posted.

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PROMACTA TREATMENT 14TH OCTOBER 10 months 3 days ago #70602

  • karenr
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  • Diagnosed in 2000, at 59, after being on moderately high doses of NSAIDs for arthritis. Splenectomy and rituxan both failed (2004). Did well on prednisone till summer 2018--then terrible reactions. Promacta since 11-19.
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My Promacta journey got very dreary indeed when, in November, a bone marrow biopsy revealed myelofibrosis, which (if I am very lucky) was caused by the Promacta. I was taken off Promacta immediately. My hematologist (now my oncologist) says I have some iffy chromosomes, so the Promacta might not have been the cause of the bone marrow cancer. My numbers have gotten better since ceasing Promacta though, so I have a tiny bit of hope. If Promacta caused the myelofibrosis, it might be reversible. I started Tavalisse--and kept the prednisone. I've decreased the prednisone now to 6-1/2 mg/day.

Promacta rarely causes myelofibrosis, so I don't think you have to worry about that. Especially when there are so many things to worry about!

Karenr

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PROMACTA TREATMENT 14TH OCTOBER 10 months 3 days ago #70603

  • GrouchoMarx
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I hope you will recover soon and everything was just side effect of Promacta. Txs for posting

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PROMACTA TREATMENT 14TH OCTOBER 6 months 2 weeks ago #71243

  • GrouchoMarx
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Hi everyone,
It would be unfair not to share also successful stories.

I am taking my 75mg of promacta with 2.5 mg of prednisone on pair days of the calendar and it works to keep me over or close to 60K.

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