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TOPIC: PROMACTA TREATMENT 14TH OCTOBER

PROMACTA TREATMENT 14TH OCTOBER 1 month 5 days ago #67878

  • Hal9000
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Groucho, see my ITP treatments table web page.
bottools.com/Hal/ItpTypes.html

To add a bit. The 4 'rows' come about from this study, which says there are exactly 4 ITP antibodies and no more.
www.bloodjournal.org/content/128/22/2548?sso-checked=true

I take it one step further and suggest there are 4 ITP 'pathophysiologies' each of which can be identified by one's responses to steroids and IVIG. Also, rows 1 and 2 are platelet 'destruction' problems. Rows 3 and 4 are platelet 'production' problems.
The following user(s) said Thank You: GrouchoMarx

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PROMACTA TREATMENT 14TH OCTOBER 1 month 5 days ago #67879

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Fascinating. Did you get any feedback from doctors or researchers?
According to the table, I am row 1 since corticoids push my count always to 3 digits. However 13 days with 50mg promacta didn't do anything. Tomorrow I will have a count again without a cold this time.

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PROMACTA TREATMENT 14TH OCTOBER 1 month 5 days ago #67883

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My count always drops when I have a cold but usually rights itself within a couple of weeks without any dose changes.

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PROMACTA TREATMENT 14TH OCTOBER 1 month 5 days ago #67884

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Mrsb,
How much does it drop normally in your case?

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PROMACTA TREATMENT 14TH OCTOBER 1 month 4 days ago #67886

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Can be anything. Initially when I was on various treatments before Promacta it could easily drop by over 50%, several times to single figures, needing a pred rescue.
Now I've become more stable on Promacta I rarely bother to get count checked in between routine monthly blood tests because I know it will go up again.
If my count is low I get some junior doctor ringing me to go into hospital because they haven't bothered to read my notes which quite clearly state I self manage my ITP and dosing and will contact the hospital should I feel the need to in between my routine 3 monthly clinic visits.

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PROMACTA TREATMENT 14TH OCTOBER 1 month 4 days ago #67887

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Excellent Mrsb. That's my ultimate goal, to visit the doctor few times a year and forget what we have.
However, I am just 16 days with promacta and I feel my sleep isn't what used to be and affects my mood. I mean the quality of the sleep. Did you have this problem? if so, did it go away with time?

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PROMACTA TREATMENT 14TH OCTOBER 4 weeks 1 day ago #67925

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GrouchoMarx wrote: Fascinating. Did you get any feedback from doctors or researchers?
According to the table, I am row 1 since corticoids push my count always to 3 digits. However 13 days with 50mg promacta didn't do anything. Tomorrow I will have a count again without a cold this time.

Groucho, I suspect doctors and researchers are keenly aware of what is current in the ITP world. Google/yahoo searches makes keeping up with piers easy. My treatments table comes up in search results just like everything else. At the recent PDSA conference there was a brief mention of someone working on optimizing treatments but didn't go into detail about what that meant. At the time I wondered if someone is doing similar research to what I have done.

There is a good chance that doctors may soon know exactly what treatment is best to give ITP patients, at diagnoses.
pdsa.org/discussion-group/13-general-discussion-for-parents/30292-study-predicting-chronic-verses-acute-itp-in-children.html#65943
Note. Web links to bloodjournal.org (referred to in the link) aren't working for some reason. Hopefully it is a brief technical issue.

Yes, likely row 1 only. I suspect if you ever notice counts going up sometimes with the Flu, instead of down only with the Flu, a row 1/2 combination is possible.

Hopefully counts will respond soon.

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PROMACTA TREATMENT 14TH OCTOBER 2 weeks 10 hours ago #68014

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Dear all,

I am confused! Is Promacta working or not?
From 14th October I am taking 50 mg of Promacta and from 11 November I am taking 75 mg. My today’s blood test shows 44K but I had this amount and even more without any treatment in the past, but it is also true that before Promacta I was down to 14K and 19 K but allegedly it was due to a cold.

Please help!!!! Is Promacta working?
All tests are done in 2 laboratories one i call it ESP and the other in my workplace.

See below my blood test record

- 18.12.18....................39000
- 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 Esp (Dapsone started 26 April)
- 02.05.19……………..44000 Esp
- 14.05.19……………..46000
- 22.05.19……………..52000 Esp
- 05.06.19……………..80000
- 19.06.19……………..53000
- 04.07.19……………..54000
- 18.07.19……………..37000
- 25.07.19……………..46000 Esp
- 06.08.19……………..41000 Esp (Dapsone finished on 6 August 2019)
- 19.08.19……………..36000
- 02.09.19……………..31000
- 16.09.19 …………….14000 Esp
- 19.09.19……………..108000 Esp (4 Dex pills starting from 17th September and ended 20th Sep)
- 26.09.19……………...47000
- 10.10.19……………...28000 (1 Dex pill Today)
- 14.10.19………………43000 Esp (50mg Revolade from today)
- 17.10.19………………19000 Esp (1 Dex pill 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

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PROMACTA TREATMENT 14TH OCTOBER 1 week 6 days ago #68015

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My advice give the promacta time to work and only have your count done at one place .

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PROMACTA TREATMENT 14TH OCTOBER 1 week 6 days ago #68016

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Txs for the advice. I cant do the lab test just in one place. I am shifting between home and expat job. So 2 lab test are on the menu unfortunately

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PROMACTA TREATMENT 14TH OCTOBER 1 week 5 days ago #68019

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44 is a great count. Perfect for Promacta.

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PROMACTA TREATMENT 14TH OCTOBER 1 week 5 days ago #68020

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So long as your count is over 30 I wouldn't worry.

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PROMACTA TREATMENT 14TH OCTOBER 1 week 5 days ago #68024

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Thank you all for the encouragement. The point is that have been very often over 30K without a treatment. If promacta isn't doing much more or simply increasing the count few Ks isn't worth the collateral effects. Anyways as suggested I need to give it time. Lets see if I manage to get steady over 50k or 60k in the next few weeks. That would be a difference that would make me consider promacta a plus.

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PROMACTA TREATMENT 14TH OCTOBER 1 week 4 days ago #68027

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Groucho
When I first started Promaca I was also tapering steroids. It was difficult juggling doses for 2 different drugs so I came to an agreement with my haemo that I would stay on 3mg Pred a day for 3 months which actually turned into 9 months whilst my Promacta dose was sorted. When I went to 50mg daily rather than alternating with 25/50 or 25/50/50 my count was 24. I had fortnightly blood tests, results 41,39,31,42,(pred down to 2.5mg) 42, onto monthly bloods, 41,41,65 (pred down to 2mg) 96,92 .
So as you can see it can take a long time for the count to start going up.

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PROMACTA TREATMENT 14TH OCTOBER 1 week 4 days ago #68028

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Interesting! Your shared experience is most useful. Txs a lot.

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PROMACTA TREATMENT 14TH OCTOBER 1 week 4 days ago #68029

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You’re welcome

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PROMACTA TREATMENT 14TH OCTOBER 5 days 1 hour ago #68067

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GrouchoMarx wrote: Thank you all for the encouragement. The point is that have been very often over 30K without a treatment. If promacta isn't doing much more or simply increasing the count few Ks isn't worth the collateral effects. Anyways as suggested I need to give it time. Lets see if I manage to get steady over 50k or 60k in the next few weeks. That would be a difference that would make me consider promacta a plus.

I agree Groucho. It does seem odd to not have increased counts on 75mg with a starting count as high as yours. What might be the problem? That would be speculation. But why go down that path until you've actually been on the drug longer?

Are you eating nothing four hours before and two hours after taking Promacta, including no milk and things like that?

Any count updates?

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PROMACTA TREATMENT 14TH OCTOBER 3 days 10 hours ago #68088

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Hi Hal,
Todays blood test showed 50 K what is already the main aim of Promacta and another increase from my 44K I had 10 days ago.
It seems my platelets are climbing slowly. Obviously I will need to keep on taking them several more months to know for sure where my platelets are heading to and to disregard that the fluctuation is due to the rollercoster involved in this illness.
It is true I had 50K and more before even without a treatment but normally the fluctuations were well below and specially the last month (maybe due to a cold). lets enjoy the benefit of the doubt and see in 10 days :)

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