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PROMACTA TREATMENT 14TH OCTOBER

  • Hal9000
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5 years 11 months ago - 5 years 11 months ago #67878 by Hal9000
Replied by Hal9000 on topic PROMACTA TREATMENT 14TH OCTOBER
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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5 years 11 months ago #67879 by GrouchoMarx
Replied by GrouchoMarx on topic PROMACTA TREATMENT 14TH OCTOBER
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.
  • mrsb04
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5 years 11 months ago #67883 by mrsb04
Replied by mrsb04 on topic PROMACTA TREATMENT 14TH OCTOBER
My count always drops when I have a cold but usually rights itself within a couple of weeks without any dose changes.
  • GrouchoMarx
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5 years 11 months ago #67884 by GrouchoMarx
Replied by GrouchoMarx on topic PROMACTA TREATMENT 14TH OCTOBER
Mrsb,
How much does it drop normally in your case?
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5 years 11 months ago - 5 years 11 months ago #67886 by mrsb04
Replied by mrsb04 on topic PROMACTA TREATMENT 14TH OCTOBER
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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5 years 11 months ago - 5 years 11 months ago #67887 by GrouchoMarx
Replied by GrouchoMarx on topic PROMACTA TREATMENT 14TH OCTOBER
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?
  • Hal9000
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5 years 10 months ago - 5 years 10 months ago #67925 by Hal9000
Replied by Hal9000 on topic PROMACTA TREATMENT 14TH OCTOBER

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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5 years 10 months ago - 5 years 10 months ago #68014 by GrouchoMarx
Replied by GrouchoMarx on topic PROMACTA TREATMENT 14TH OCTOBER
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
  • mrsb04
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5 years 10 months ago #68015 by mrsb04
Replied by mrsb04 on topic PROMACTA TREATMENT 14TH OCTOBER
My advice give the promacta time to work and only have your count done at one place .
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5 years 10 months ago #68016 by GrouchoMarx
Replied by GrouchoMarx on topic PROMACTA TREATMENT 14TH OCTOBER
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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5 years 10 months ago #68019 by JJ
Replied by JJ on topic PROMACTA TREATMENT 14TH OCTOBER
44 is a great count. Perfect for Promacta.
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5 years 10 months ago - 5 years 10 months ago #68020 by mrsb04
Replied by mrsb04 on topic PROMACTA TREATMENT 14TH OCTOBER
So long as your count is over 30 I wouldn't worry.
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5 years 10 months ago #68024 by GrouchoMarx
Replied by GrouchoMarx on topic PROMACTA TREATMENT 14TH OCTOBER
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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5 years 10 months ago - 5 years 10 months ago #68027 by mrsb04
Replied by mrsb04 on topic PROMACTA TREATMENT 14TH OCTOBER
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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5 years 10 months ago #68028 by GrouchoMarx
Replied by GrouchoMarx on topic PROMACTA TREATMENT 14TH OCTOBER
Interesting! Your shared experience is most useful. Txs a lot.
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5 years 10 months ago #68029 by mrsb04
Replied by mrsb04 on topic PROMACTA TREATMENT 14TH OCTOBER
You’re welcome
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5 years 10 months ago - 5 years 10 months ago #68067 by Hal9000
Replied by Hal9000 on topic PROMACTA TREATMENT 14TH OCTOBER

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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5 years 10 months ago #68088 by GrouchoMarx
Replied by GrouchoMarx on topic PROMACTA TREATMENT 14TH OCTOBER
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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5 years 9 months ago #68135 by Hal9000
Replied by Hal9000 on topic PROMACTA TREATMENT 14TH OCTOBER
Groucho, yes. A slow climb to 100 or so wouldn't be that unusual. But holding in your normal range (30 - 50 ?), that would be special. Maybe a first here.
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5 years 9 months ago #68209 by GrouchoMarx
Replied by GrouchoMarx on topic PROMACTA TREATMENT 14TH OCTOBER
70K last Friday and 44K today because of a cold. Promacta is working.
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5 years 9 months ago #68227 by Hal9000
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5 years 9 months ago - 5 years 9 months ago #68267 by GrouchoMarx
Replied by GrouchoMarx on topic PROMACTA TREATMENT 14TH OCTOBER
Today my test shows i am in 35K. I just came out of a cold but i believe it is still too low being on Promacta for 2 months and 15 days.
Will have a test again on 9th January. I am in a maximum dose of 75mg.
I have been on 14K before promacta but an increase of just 20K with a 75mg? It seems too little.
Before the cold I was on 70K exactly 3 weeks ago (but test done in another lab).
I must give it time..... i know the answer :)
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5 years 8 months ago - 5 years 8 months ago #68294 by GrouchoMarx
Replied by GrouchoMarx on topic PROMACTA TREATMENT 14TH OCTOBER
Today 32K with 75mg of Promacta. Doctor wants the dose to be increased to 100mg. just 32K cos still under the effect of a cold?
On other hand, doctor panicked a bit cos my body is producing red blood cells what suppose to mean that I am losing blood somewhere. He wants my digestive system and colon been checked. I did a colonoscopy 14 months ago without any results apart from minor haemorrhoids. My level of iron is in range but on the borderline hat means that indeed I must be losing blood.
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5 years 8 months ago #68295 by GrouchoMarx
Replied by GrouchoMarx on topic PROMACTA TREATMENT 14TH OCTOBER
Let suppose I have a minor regular lose of blood somewhere. For instance through an ulcer or hemorrhoids. Would it be putting my platelets level down?
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5 years 8 months ago #68333 by Hal9000
Replied by Hal9000 on topic PROMACTA TREATMENT 14TH OCTOBER
Oh my Groucho, 100 mg. Let me ask. Did the doctor recommend 100 mg, or, did you ask your doctor for 100 mg? Since you read about other experiences here on PDSA, I'm guessing the later, LOL.

If it were me, I'd be on / ask doctor about 5,000 to 10,000 IU of Vitamin D. Get rid of that cold.

Don't know about blood loss estimates...
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5 years 8 months ago - 5 years 8 months ago #68342 by GrouchoMarx
Replied by GrouchoMarx on topic PROMACTA TREATMENT 14TH OCTOBER
Hi Hal,
It was the doctor who wanted me to increase the dose to 100mg. I didnt follow his prescription because I dont have enough med until my due next supply.
However, after reading you all, I am not willing to increase the dose yet. My count went down from 70K to 44K to 35 K to 32K in a 3 weeks period during a cold. What seems to me ok considering I had Promacta only for 3 months. Besides my MPV is very very high what mean I probably I have many more platelets than the one calibrated. No bleeding, bruises blisters or anything as usual. The cold is over i think, and I am pretty sure I will be back over 50K on my next test that is due on Monday.
My hope is that I that the med starts building up in my liver and a gradual increase to 70K - 100K will be reached before April (I mean several consecutive steady lab tests). My main problem are the colds. My children bring me colds at home from the school and also I flight a lot, and seems to me that planes a good place for cold virus transmision. Hope that if I managed to reach the top of efectiveness with the med (eg 80K - 90K) even catching a cold will not put my counts below 50 as it does now.
Anyways, I am still in the wait and see phase and Promacta on trial status for my doctor.
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5 years 8 months ago #68362 by GrouchoMarx
Replied by GrouchoMarx on topic PROMACTA TREATMENT 14TH OCTOBER
Good news. 62K today, even with a bit of runny nose (Leukocits at 9.3).
Thanks God it seems Promacta/Revolade is working. I am so happy. I started to see the end of the tunnel. I will be happy to move between 40K to 70K in the incoming years; what basically means normal life.
I am glad I didnt follow doctors advice to increase the dose to 100mg when I had 32K due to a cold. 75mg is enough to get me out of the hole and God knows if the count will keep going up with the months to the point I need to decrease the dose.
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5 years 8 months ago #68393 by Hal9000
Replied by Hal9000 on topic PROMACTA TREATMENT 14TH OCTOBER
Yes, forgetting about ITP and getting back to normal life does make all the difference. Like a weight off of one's back.
Having a doctor with 100 mg dose in his bag of ITP tricks is a good thing.
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5 years 7 months ago - 5 years 7 months ago #68440 by GrouchoMarx
Replied by GrouchoMarx on topic PROMACTA TREATMENT 14TH OCTOBER
62K on 20th January
63K on 7th February
75mg daily is giving me a stable count over 60K. I am very happy. Its not skyrocketing my counts but I appreciate the consistency of the counts. Kind of amazing after the rollercoaster.

Let's see if my wife's cold gets into me how low my counts goes:)
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5 years 7 months ago #68445 by MelA
Replied by MelA on topic PROMACTA TREATMENT 14TH OCTOBER
That is good - happy for you!
Now according to my former hematologist [started with a new one closer to me] you don't want your count to sky rocket.

"Instead of wasting your time worrying about symptoms, just get it checked out" -Nieca Goldberg, MD