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(17 May 2024) My platelet count was 171

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2 years 8 months ago - 2 years 8 months ago #72211 by MelA
Replied by MelA on topic (5 Mar 2022) My platelet count was 150
Interesting you had the Shingrix shingles vaccine - I was told not to get it due to my ITP.
"Instead of wasting your time worrying about symptoms, just get it checked out" -Nieca Goldberg, MD
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2 years 7 months ago #72291 by drbean7218
Replied by drbean7218 on topic (5 Mar 2022) My platelet count was 150

Interesting you had the Shingrix shingles vaccine - I was told not to get it due to my ITP.

My right eye was optical disc swelling in last year summer holiday.  The doctor referred to my previous medical history and guess it was caused by VZV meningitis.

My family doctor strongly recommend me to have Shringrix Shingles vaccine. Its worth to do it, since the treatment for VZV meningitis was
very tough.

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2 years 7 months ago - 2 years 7 months ago #72292 by MelA
Replied by MelA on topic (5 Mar 2022) My platelet count was 150
It was my immunologist who told me not to get the Shingrix vaccine - I trust him more.

I wasn't sure what VZV meningitis was so searched.    Your doctor "...guess it was caused by VZV meningitis."   
Did you have shingles at the time of this optic disc swelling?  I think I'd really rather have a positive cause because there are many causes for the swelling.

I have had shingles 2x - hematologist knew it was shingles and boy so did I!
Even having had shingles 2x and knowing I could get it a 3rd time [have a friend who did] I won't get it yet.
I'm very glad you had no complications from the Shingrix vaccine!   
Continued good luck drbean!
"Instead of wasting your time worrying about symptoms, just get it checked out" -Nieca Goldberg, MD
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1 year 10 months ago #72887 by drbean7218
Replied by drbean7218 on topic (18 Nov 2022) My platelet count was 178
My platelet count from May to Dec 22 are as follows;
14/05/2022 144
25/06/2022 151
20/08/2022 148
15/10/2022 171 (infected with COVID-19)
31/10/2022 186
18/11/2022 178

The combination of current treatment:
a. Cyclosporine A - 100 mg daily (am: 50 mg, pm: 50 mg)
b. Azathioprine - 50 mg
c. Folic acid - 5 mg daily
d. Famotidine - 20 mg daily
e. Acyclovir - 800 mg daily (am: 400 mg, pm: 400 mg)

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1 year 10 months ago #72894 by MelA
Replied by MelA on topic (18 Nov 2022) My platelet count was 178
Good to see you drbean!  Your count is doing great - interesting covid increased your count.
Are you still in Hong Kong?
"Instead of wasting your time worrying about symptoms, just get it checked out" -Nieca Goldberg, MD
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1 year 10 months ago #72895 by drbean7218
Replied by drbean7218 on topic (7 Jan 2023) My platelet count was 169
Hi MelA

It's good to hear from you.  I am still in Hong Kong.

My count is doing great so far, espcailly from Oct 2022. 

I am not sure due to infection of COVID-19 or a new manager is transferred from other department.

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1 year 10 months ago #72896 by drbean7218
Replied by drbean7218 on topic (7 Jan 2023) My platelet count was 169
My platelet count was 169 on 7 Jan 2023

The combination of current treatment:
a. Cyclosporine A - 100 mg daily (am: 50 mg, pm: 50 mg)
b. Azathioprine - 50 mg
c. Folic acid - 5 mg daily
d. Famotidine - 20 mg daily
e. Acyclovir - 800 mg daily (am: 400 mg, pm: 400 mg)

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1 year 10 months ago #72897 by drbean7218
Replied by drbean7218 on topic (5 Mar 2022) My platelet count was 150
I didn't have shingles at the time of this optic disc swelling.

My doctor said that the symptom might due suppressed due to Acyclovir.

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1 year 10 months ago #72909 by ImPatient
Replied by ImPatient on topic (7 Jan 2023) My platelet count was 169
Does Famotidine also have something to do with your ITP? It's an allergy medicine?
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  • mrsb04
  • Offline
  • ITP since 2014. Retired nurse. My belief is empower patients to be involved as much as possible in their care. Read, read, read & ALWAYS question medics about the evidence base they use.
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1 year 10 months ago #72913 by mrsb04
Replied by mrsb04 on topic (7 Jan 2023) My platelet count was 169
Does Famotidine also have something to do with your ITP? It's an allergy medicine?

Famotidine is an H2-receptor antagonist.
www.mayoclinic.org/drugs-supplements/famotidine-oral-route/precautions/drg-20072972?p=1
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1 year 10 months ago #72927 by Margaret k
Replied by Margaret k on topic (5 Mar 2022) My platelet count was 150
I had no adverse effects from the shingrix  vaccine either.

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1 year 10 months ago #72950 by drbean7218
Replied by drbean7218 on topic (7 Jan 2023) My platelet count was 169

Does Famotidine also have something to do with your ITP? It's an allergy medicine?

I am not sure, since Famotidine has been used when I was taking  Prednisolone .  However, my doctor didn't take that out even I wasn't required to take  Prednisolone .

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1 year 10 months ago #72951 by MelA
Replied by MelA on topic (7 Jan 2023) My platelet count was 169
When taking prednisone as us ITPers do we should be taking something to protect our stomach - famotidine would do that.  I don't know if it is needed when taking the others.   If you want you could ask your doctor if it is still needed.   
"Instead of wasting your time worrying about symptoms, just get it checked out" -Nieca Goldberg, MD

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8 months 1 week ago #73506 by drbean7218
Replied by drbean7218 on topic (5 Mar 2022) My platelet count was 150
My platelet count from Feb 23 to Mar 24 are as follows;
4 Mar 23 - 178
22 Apr 23 - 166
5 Jun 23 - 190
22 Jul 23 - 152
28 Oct 23 - 172
18 Dec 23 - 193
5 Feb 24 - 166
23 Mar 24 - 174

The combination of current treatment:
a. Cyclosporine A - 100 mg daily (am: 50 mg, pm: 50 mg)
b. Azathioprine - 50 mg
c. Folic acid - 5 mg daily
d. Famotidine - 20 mg daily
e. Acyclovir - 800 mg daily (am: 400 mg, pm: 400 mg)

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8 months 1 week ago #73507 by MelA
Replied by MelA on topic (5 Mar 2022) My platelet count was 150
Hey drbean it is good to see you - and that great platelet count!!
Think your hematologist may start tapering you off a med slowly since your count is stable?
Thank you for keeping in touch and letting us know how you are doing!
"Instead of wasting your time worrying about symptoms, just get it checked out" -Nieca Goldberg, MD
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8 months 1 week ago - 8 months 1 week ago #73508 by drbean7218
Replied by drbean7218 on topic (5 Mar 2022) My platelet count was 150
My haematologist has no plans to slowly taper me off a drug, even though my count is stable.

In fact, we have experienced too many platelet disorder events to go one step further at this stage.

Therefore, my current treatment has not changed since January 2022, which is more than two years ago.

It's a pleasure to share my experience with other ITP patients, also medical students.

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  • mrsb04
  • Offline
  • ITP since 2014. Retired nurse. My belief is empower patients to be involved as much as possible in their care. Read, read, read & ALWAYS question medics about the evidence base they use.
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8 months 1 week ago #73509 by mrsb04
Replied by mrsb04 on topic (5 Mar 2022) My platelet count was 150
Goodness dr bean  what a cocktail of drugs you are still on. Surely it would be good to try slight taper. Protocols state the lowest dose of meds to maintain a count ≥ 50 
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8 months 1 week ago #73510 by drbean7218
Replied by drbean7218 on topic (5 Mar 2022) My platelet count was 150
We have tried several times to reduce the cyclosporine A to 25-75 mg daily, but the platelet collapsed after a week.

That's why we stopped at the current level and didn't move forward.

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  • mrsb04
  • Offline
  • ITP since 2014. Retired nurse. My belief is empower patients to be involved as much as possible in their care. Read, read, read & ALWAYS question medics about the evidence base they use.
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8 months 4 days ago #73514 by mrsb04
Replied by mrsb04 on topic (5 Mar 2022) My platelet count was 150
Have you tried reducing Azathioprine at all?
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8 months 4 days ago #73517 by drbean7218
Replied by drbean7218 on topic (23 Mar 2024) My platelet count was 174
We only reduce the dose once from 75 mg to 50 mg.  After that, we never change it.

We also thought that azathioprine was the key to getting my platelets to stabilise in the normal range.

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  • mrsb04
  • Offline
  • ITP since 2014. Retired nurse. My belief is empower patients to be involved as much as possible in their care. Read, read, read & ALWAYS question medics about the evidence base they use.
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8 months 3 days ago #73521 by mrsb04
Replied by mrsb04 on topic (5 Mar 2022) My platelet count was 150
The whole point of treating ITP is not to normalise platelet count but to aim for a safe count by using the lowest dose of medication to keep a count around 50 to 80

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6 months 3 days ago #73583 by drbean7218
Replied by drbean7218 on topic (17 May 2024) My platelet count was 171
My platelet count from Feb 23 to May 24 are as follows;
4 Mar 23 - 178
22 Apr 23 - 166
5 Jun 23 - 190
22 Jul 23 - 152
28 Oct 23 - 172
18 Dec 23 - 193
5 Feb 24 - 166
23 Mar 24 - 174
17 May 24 - 171

The combination of current treatment:
a. Cyclosporine A - 100 mg daily (am: 50 mg, pm: 50 mg)
b. Azathioprine - 50 mg
c. Folic acid - 5 mg daily
d. Famotidine - 20 mg daily
e. Acyclovir - 800 mg daily (am: 400 mg, pm: 400 mg)

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6 months 3 days ago #73584 by drbean7218
Replied by drbean7218 on topic (5 Mar 2022) My platelet count was 150

The whole point of treating ITP is not to normalise platelet count but to aim for a safe count by using the lowest dose of medication to keep a count around 50 to 80
 
The problem is that if we go one step further and reduce the dose of cyclosporin A to less than 100 mg daily, then my platelet is likely to crash again, that's my experience.

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2 months 1 week ago #73676 by hart1960
Replied by hart1960 on topic (17 May 2024) My platelet count was 171
Hello,
Do you know much about these medications? I am asking for a friend-
  1. daratumumab
  2. rituxan
  3. Nplate
  4. fostamatinib 
  5. Rilzabrutinib
Thanks
 

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