(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.

MelA wrote:

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.

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!

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)

Good to see you drbean!  Your count is doing great - interesting covid increased your count.
Are you still in Hong Kong?

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.

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.

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

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

I had no adverse effects from the shingrix  vaccine either.

ImPatient wrote:

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 .

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.   

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)

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!

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.

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 

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.

Have you tried reducing Azathioprine at all?

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.

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

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)

mrsb04 wrote:

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.

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
 

My platelet count from Jul 24 to Feb 26 are as follows;
15 Jul 24 - 184
16 Sep 24 - 153
16 Dec 24 - 157
7 Apr 25 - 183
14 Jul 25 - 167
3 Nov 25 - 167
12 Feb 26 - 177

The combination of medical treatment starting from 23 Feb 2026

a. Cyclosporine A - 75 mg daily (am: 50 mg, pm: 25 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)

 I have cyclic thrombocytopenia, and am interested, especially in the cyclosporine A, and maybe some of the other drugs you are on. I believe I will soon start with the Cyclosporine A. You did mention a year ago that you thought azathioprine may have been key to stabilize platelets. So maybe I should look into that more, too.

It is a bunch of medications different than most are used to seeing. You never saw any indication that you had a cyclic nature to your disorder, right? You might even say that these medications are for cyclic thrombocytopenia.

Like I say, interested especially for my case in the cyclosporine A. Is there something about it not working for a month and a half when starting on it, and maybe it stopping working after a month and a half of not using it? I don't understand if there is this delay, since I believe transplant patients don't start using it until surgery... 

I would love to use it just for the platelet drop phase of my cyclic thrombocytopenia, right after the peak, but it probably is not that reactive, hence the delay factor.

So drbean, you said this a year and 10 months ago: 

"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."

So, the cyclosporine did react quickly when dropping the dosage shortly. Interesting, for sure, thank you. So that was dropping it below 100 mg a day. I think I might start out at 150 mg times 2 (am and pm). I weigh 70kg, by the way. Azathioprine would be the other question. 

Or maybe I could do like you and take 100 mg cyclosporine twice a day and 50 mg Azathioprine. I will discuss with doctor in March. Not sure how he feels about starting 2 drugs at the same time. Probably not so much. I do read though that a side effect of azathioprine is bruising and bleeding, so I'll probably skip that at first.

Itpjourney wrote:  I have cyclic thrombocytopenia, and am interested, especially in the cyclosporine A, and maybe some of the other drugs you are on. I believe I will soon start with the Cyclosporine A. You did mention a year ago that you thought azathioprine may have been key to stabilize platelets. So maybe I should look into that more, too.

It is a bunch of medications different than most are used to seeing. You never saw any indication that you had a cyclic nature to your disorder, right? You might even say that these medications are for cyclic thrombocytopenia.

Like I say, interested especially for my case in the cyclosporine A. Is there something about it not working for a month and a half when starting on it, and maybe it stopping working after a month and a half of not using it? I don't understand if there is this delay, since I believe transplant patients don't start using it until surgery... 

I would love to use it just for the platelet drop phase of my cyclic thrombocytopenia, right after the peak, but it probably is not that reactive, hence the delay factor.

Thank you for your reply.

I am not sure whether I am cyclic thrombocytopenia or not.

The turning point in my case was my doctor found platelet antibodies GP IB/IX in my blood sample in Q4 2019, which could be the root cause of my ITP.

They then introduced azathioprine into my medical treatment.  Since then, my platelet count has been rising back to normal levels, and we have also phased out prednisolone and eltrombopag.

You can refer to my medical treatment in Q4 of 2019, when my platelet count crashed last time.

a. Cyclosporine A - 250 mg daily (am: 125 mg, pm: 125 mg)
b. Azathioprine - 50 mg
c. Eltrombopag - 25 mg daily
d. Prednisone - 20 mg daily
e. Folic acid - 5 mg daily
f. Famotidine - 20 mg daily
g. Acyclovir - 800 mg daily (am: 400 mg, pm: 400 mg)

The reason for using acyclovir is that I had shingles in August 2019.

Itpjourney wrote: So drbean, you said this a year and 10 months ago: 

"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."

So, the cyclosporine did react quickly when dropping the dosage shortly. Interesting, for sure, thank you. So that was dropping it below 100 mg a day. I think I might start out at 150 mg times 2 (am and pm). I weigh 70kg, by the way. Azathioprine would be the other question. 

Or maybe I could do like you and take 100 mg cyclosporine twice a day and 50 mg Azathioprine. I will discuss with doctor in March. Not sure how he feels about starting 2 drugs at the same time. Probably not so much. I do read though that a side effect of azathioprine is bruising and bleeding, so I'll probably skip that at first.

I weigh 100 kg.

The antibodies could be causing the platelet count to crash so quickly whenever the cyclosporine dosage is reduced below particular dosage.

However, this time we believe it may be different, as I am still taking azathioprine, which lowers lymphocyte levels below the normal range.

Thank you. Actually, I'm 75 kg. Did the math wrong, before. 

I will tell my doctor this week on your antibody breakthrough. Could be helpful. He did ask for "many genetic tests", according to my insurance who declined because "fewer genetic tests should be requested first".

I notice that you said azathioprine lowers your lymphocytes below normal. My lymphocyte values are always low, but I suppose actually low normal, which would still be higher than "below normal".