TOPIC:

drbean is in Hong Kong - maybe they do things differently there. I lived there and had private medical not the public - of course all these new drugs weren't available when I lived there. (I do have a tendency to immediately say no to everything, that is why I still have my spleen). Like alison and mrsb I feel that there are so many drugs being put into his body. Also I've had shingles 2x and it was never suggested I take an antiviral all the time.

I just hope you do well drbean - take care!!

mrsb04 wrote:

Dr Bean
Your platelet count remains at 400% above treatment target count ergo high clotting risk.
You are now on 5mg of Prednisone which is below the physiological dose so is probably having little effect on you count and is realistically a tapering regime, which incidentally needs to be very gentle henceforth unless you want to add adrenal insufficiency to the show. You continue to take Acyclovir as prophylaxis against shingles, whilst consistently assaulting your system with 2 further immunosuppressants. Admittedly your Cyclosporine dose reduced from 250mg to 200mg in February. Your Azathioprine dose has remained on 75mg.
Why do you keep reducing your Eltrombopag dose instead of your immunosuppressants all 3 of which carry huge risks to long term health?

Thank you for your reply.

If you still remember my platelet crashed last year, the platelet count became stable after 5 rounds IVIG, and my doctor found antibodies in my platelet. but we still don't know the exact cause of that crash and what made the medicines weren't effective.

My doctor reduce the dose of medicine one at a time to minimize the risk that cause the game back to the starting point again.
Justification of reducing/ not reducing the medicines below
1. Eltrombopag - my doctor is considering a high price of buying this medicine in Hong Kong.
2. Cyclosporine A - my doctor will reduce the dose if blood test result is normal next time
3. Prednisone - It can't be removed, unless my doctor arrange an Adrenaline test for me
4. Acyclovir - That's my doctor's decision

Dr Bean wrote
Prednisone - It can't be removed, unless my doctor arrange an Adrenaline test for me
That is a new one on me, unless you mean a cortisol level test. You have coped with reductions in dose so far so why test now?
I don't see why you cannot continue your taper and get off the horrid drug. But very slowly reducing by a maximum of 1mg/day each month and test if you cannot cope with that.
You didn't mention Azathioprine.
Quite frankly I'd rather pay the money for Eltrombopag and lose the immunosuppressants.
Do you have discussions with your doctor or are you told what to do?

mrsb04 wrote:

Dr Bean wrote
Prednisone - It can't be removed, unless my doctor arrange an Adrenaline test for me
That is a new one on me, unless you mean a cortisol level test. You have coped with reductions in dose so far so why test now?
I don't see why you cannot continue your taper and get off the horrid drug. But very slowly reducing by a maximum of 1mg/day each month and test if you cannot cope with that.
You didn't mention Azathioprine.
Quite frankly I'd rather pay the money for Eltrombopag and lose the immunosuppressants.
Do you have discussions with your doctor or are you told what to do?

My doctor just briefly tell me about the test, it may be ACTH stimulation test.

I didn't mention Azathioprine, because the concentration of Cyclosporine A (with 125mg bd) was insufficient in my blood. It may be ineffective to suppress my immune system with Cyclosporine A and prednisolone.

For Eltrombopag, it was a self-financed medicine in Hong Kong, it cost at least USD 1,200 per month for taking 25mg daily.

FYI, the current USA price for a 25mg bottle of Promacta is about $5,400. As I understand, the USA subsidizes the cost to the rest of the world for many drugs and is why it is just $1,200 in China. Now take that cost discrepancy/imbalance and one can realize one of many reasons why healthcare costs are so high in USA compared to the rest of the world. Note, there are some USA politicians who are proposing to level drug costs - which is a fair thing to do and should be done without delay.

If one takes the time to read all of DrBean's thread one can understand and appreciate why he is taking all these drugs. LOL, I think he has the longest thread on here.

DrBean, do you know if the new drug Doptelet/Avatrombopag is available in China yet? It might be cheaper. Note that it is about 4 times more potent than Promacta. So, a 20mg tablet of Doptelet is about the same strength as a 75mg tablet of Promacta. IMHO, it should also be more effective and potentially help take Cyclosporine off your list.

Thank you for you information.
I have discussed with my doctor, he mentioned there was no new drug available in Hong Kong for ITP.

I have performed 2 blood test in May 2020, details are as follows;
9 May 2020: 252 (result from body check)
23 May 2020 :221

The combination of my treatment:
a. Cyclosporine A - 200 mg daily (am: 100 mg, pm: 100 mg)
b. Azathioprine - 75 mg
c. Eltrombopag - 25 mg daily
d. Prednisone - 5 mg daily
e. Folic acid - 5 mg daily
f. Famotidine - 20 mg daily
g. Acyclovir - 800 mg daily (am: 400 mg, pm: 400 mg)

My platelet count was 240 from blood test on 20 June 2020

The combination of my treatment:
a. Cyclosporine A - 200 mg daily (am: 100 mg, pm: 100 mg)
b. Azathioprine - 75 mg
c. Eltrombopag - 25 mg (for six days a week)
d. Prednisone - 5 mg daily
e. Folic acid - 5 mg daily
f. Famotidine - 20 mg daily
g. Acyclovir - 800 mg daily (am: 400 mg, pm: 400 mg)

Are you reducing any of your meds after this count?

My doctor didn't reduce other meds after this count

Are you are happy to carry on with 4 different ITP medications with a count that high? It must be costing you a fortune

My thought is: Are you sure you are happy with taking all those ITP med with a count that high and is dangerous if it goes too high?

Is this a private doctor in HK?

I am surprised with the platelet count maintain at mid-high level, since my focus was the stability of immune system.

Last time, my doctor and I discussed different factors for considering which med is going to be reduced, such as
1. Cost
2. Effectiveness
3. Side effect......

Therefore, my doctor decided to continue reducing the dose of Eltrombopag. A low dose short Synacthen test (1 mcg) is arranged in Aug 2020. If the test result is fine, we can remove Prednisone as well.

I have consulted a private doctor in HK before, he suggested to reduce the dose of meds immediately, and it was different in Government Hospital.

You cannot just remove Prednisolone you must taper it. You are now on 5mg/day so it is going to take you a minimum of another 4 months to get off it.
Hopefully you will not suffer horrid withdrawal symptoms like I did.

mrsb04 wrote:

You cannot just remove Prednisolone you must taper it. You are now on 5mg/day so it is going to take you a minimum of another 4 months to get off it.
Hopefully you will not suffer horrid withdrawal symptoms like I did.

Thanks for your information. I'll confront it optimistically.

My family doctor told me that I may have Posttraumatic stress disorder (ptsd) which may be caused by my job and supervisor, and ptsd may be the cause of my immune system become disorder.

My platelet count was 237 from blood test on 18 July 2020

The combination of my treatment:
a. Cyclosporine A - 200 mg daily (am: 100 mg, pm: 100 mg)
b. Azathioprine - 75 mg
c. Eltrombopag - 25 mg (for five days a week, no need to take drug on Wednesday & Sunday)
d. Prednisone - 5 mg daily
e. Folic acid - 5 mg daily
f. Famotidine - 20 mg daily
g. Acyclovir - 800 mg daily (am: 400 mg, pm: 400 mg)

I'm tuning in late on this thread. DR, do you have any difficult side-effects with any of these drugs?

karenr wrote:

I'm tuning in late on this thread. DR, do you have any difficult side-effects with any of these drugs?

The side effects are gain weight and severe acne on my face.

For acne, it seems better with Traditional Chinese medicine and acupuncture.

My platelet count was 255 from blood test on 17 Aug 2020

The combination of my treatment:
a. Cyclosporine A - 200 mg daily (am: 100 mg, pm: 100 mg)
b. Azathioprine - 75 mg
c. Eltrombopag - 25 mg (for five days a week, no need to take drug on Wednesday & Sunday)
d. Prednisone - 2.5 mg daily (reduced 2.5 mg)
e. Folic acid - 5 mg daily
f. Famotidine - 20 mg daily
g. Acyclovir - 800 mg daily (am: 400 mg, pm: 400 mg)

The platelet count from 21 Aug 2020 to 14 Nov 2020 are as follows;
21/8/2020 285
19/9/2020 233
17/10/2020 278
14/11/2020 273

The combination of my treatment:
a. Cyclosporine A - 200 mg daily (am: 100 mg, pm: 100 mg)
b. Azathioprine - 75 mg
c. Eltrombopag - 25 mg (for four days a week, no need to take drug on Tue, Thur & Sat)
d. Folic acid - 5 mg daily
e. Famotidine - 20 mg daily
f. Acyclovir - 800 mg daily (am: 400 mg, pm: 400 mg)

You are no longer on prednisone?
your count is steady - that is good

Hopefully be able to start reducing Azathioprine and/or Cyclosporine soon

MelA wrote:

You are no longer on prednisone?
your count is steady - that is good

Yes, you are right. Prednisone has been removed from my medical treatment since 17/10/2020.

mrsb04 wrote:

Hopefully be able to start reducing Azathioprine and/or Cyclosporine soon

Our plan is reducing Eltrombopag first, then Azathioprine and/or Cyclosporine.

However, I am really concern of reducing Cyclosporine. I traced my previous records, if the total dose of Cyclosporine less than 75 mg daily, the platelet will be crashed after 3.75 months (on average)

Personally I would rather be on Eltrombopag than either Azathioprine or Cyclosporine

drbean7218 wrote:

d. Folic acid - 5 mg daily

Recently someone I know was put on 1mg of folic acid a day after being in the hospital for over a month. The doctor did not refill the prescription later and so I was curious. Looking up Folic Acid I now see why.

5mg of Folic Acid is nothing to sneeze at - I would question my doctor as to why I would need that huge amount for any length of time.

medlineplus.gov/druginfo/natural/1017.html


From webmd
"Folic Acid: Uses, Side Effects, Interactions, Dosage, and Warning
Although doses up to 5 mg daily have been safely used in some research, doses of folic acid greater than 1 mg daily might cause abdominal cramps, diarrhea, rash, sleep disorders, irritability, confusion, nausea, stomach upset, behavior changes, skin reactions, seizures, gas, excitability, and other side effects."

MelA wrote:

drbean7218 wrote:

d. Folic acid - 5 mg daily

Recently someone I know was put on 1mg of folic acid a day after being in the hospital for over a month. The doctor did not refill the prescription later and so I was curious. Looking up Folic Acid I now see why.

5mg of Folic Acid is nothing to sneeze at - I would question my doctor as to why I would need that huge amount for any length of time.

medlineplus.gov/druginfo/natural/1017.html


From webmd
"Folic Acid: Uses, Side Effects, Interactions, Dosage, and Warning
Although doses up to 5 mg daily have been safely used in some research, doses of folic acid greater than 1 mg daily might cause abdominal cramps, diarrhea, rash, sleep disorders, irritability, confusion, nausea, stomach upset, behavior changes, skin reactions, seizures, gas, excitability, and other side effects."

Thank you for your sharing.

I am still taking Folic Acid due to Autoimmune hemolytic anemia (AIHA) in the early years

Aha! If you had mentioned that earlier I'm sorry I missed/forgot it.
(but isn't it nice to know you are cared about )

My hb level has been stable for a long time, I am not sure why my dcotor still need me to take Folic Acid.
The similar case is happening for taking Famotidine, it should be a protective measure for taking Prednisone, but Prednisone has been stopped for more than a month and I still need to take Famotidine.

Have you asked why you are being kept on these medications?