Be a part of the ITP community and stay informed.
Login to your account or REGISTER
.

•  Web site Help & Info

Welcome, Guest
Username: Password: Remember me

TOPIC:

(25 Apr 2020) My platelet count was 253 2 years 5 months ago #68975

  • MelA
  • Offline
  • Posts: 1013
  • Karma: 2
  • Thank you received: 337
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!!
"Instead of wasting your time worrying about symptoms, just get it checked out" -Nieca Goldberg, MD
The following user(s) said Thank You: drbean7218

Please Log in or Create an account to join the conversation.

(25 Apr 2020) My platelet count was 253 2 years 5 months ago #68979

  • drbean7218
  • Offline
  • Posts: 195
  • Thank you received: 9

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

Please Log in or Create an account to join the conversation.

(25 Apr 2020) My platelet count was 253 2 years 5 months ago #68980

  • mrsb04
  • Away
  • 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.
  • Posts: 2021
  • Karma: 7
  • Thank you received: 575
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?

Please Log in or Create an account to join the conversation.

(25 Apr 2020) My platelet count was 253 2 years 5 months ago #68986

  • drbean7218
  • Offline
  • Posts: 195
  • Thank you received: 9

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.

Please Log in or Create an account to join the conversation.

(25 Apr 2020) My platelet count was 253 2 years 4 months ago #69104

  • Hal9000
  • Offline
  • Give me all your platelets and nobody gets hurt
  • Posts: 1699
  • Karma: 10
  • Thank you received: 246
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.
The following user(s) said Thank You: drbean7218

Please Log in or Create an account to join the conversation.

(25 Apr 2020) My platelet count was 253 2 years 3 months ago #69219

  • drbean7218
  • Offline
  • Posts: 195
  • Thank you received: 9
Thank you for you information.
I have discussed with my doctor, he mentioned there was no new drug available in Hong Kong for ITP.

Please Log in or Create an account to join the conversation.

(23 May 2020) My platelet count was 221 2 years 3 months ago #69220

  • drbean7218
  • Offline
  • Posts: 195
  • Thank you received: 9
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)

Please Log in or Create an account to join the conversation.

(20 June 2020) My platelet count was 240 2 years 3 months ago #69326

  • drbean7218
  • Offline
  • Posts: 195
  • Thank you received: 9
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)

Please Log in or Create an account to join the conversation.

(20 June 2020) My platelet count was 240 2 years 3 months ago #69327

  • mrsb04
  • Away
  • 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.
  • Posts: 2021
  • Karma: 7
  • Thank you received: 575
Are you reducing any of your meds after this count?

Please Log in or Create an account to join the conversation.

(20 June 2020) My platelet count was 240 2 years 3 months ago #69330

  • drbean7218
  • Offline
  • Posts: 195
  • Thank you received: 9
My doctor didn't reduce other meds after this count

Please Log in or Create an account to join the conversation.

(20 June 2020) My platelet count was 240 2 years 3 months ago #69331

  • mrsb04
  • Away
  • 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.
  • Posts: 2021
  • Karma: 7
  • Thank you received: 575
Are you are happy to carry on with 4 different ITP medications with a count that high? It must be costing you a fortune
The following user(s) said Thank You: drbean7218

Please Log in or Create an account to join the conversation.

(20 June 2020) My platelet count was 240 2 years 3 months ago #69332

  • MelA
  • Offline
  • Posts: 1013
  • Karma: 2
  • Thank you received: 337
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?
"Instead of wasting your time worrying about symptoms, just get it checked out" -Nieca Goldberg, MD
The following user(s) said Thank You: drbean7218

Please Log in or Create an account to join the conversation.

(20 June 2020) My platelet count was 240 2 years 3 months ago #69339

  • drbean7218
  • Offline
  • Posts: 195
  • Thank you received: 9
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.

Please Log in or Create an account to join the conversation.

(20 June 2020) My platelet count was 240 2 years 3 months ago #69340

  • mrsb04
  • Away
  • 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.
  • Posts: 2021
  • Karma: 7
  • Thank you received: 575
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.
The following user(s) said Thank You: drbean7218

Please Log in or Create an account to join the conversation.

(20 June 2020) My platelet count was 240 2 years 3 months ago #69345

  • drbean7218
  • Offline
  • Posts: 195
  • Thank you received: 9

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.

Please Log in or Create an account to join the conversation.

(18 July 2020) My platelet count was 237 2 years 2 months ago #69497

  • drbean7218
  • Offline
  • Posts: 195
  • Thank you received: 9
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)

Please Log in or Create an account to join the conversation.

(18 July 2020) My platelet count was 237 2 years 2 months ago #69506

  • karenr
  • Offline
  • Diagnosed in 2000, at 59, after being on moderately high doses of NSAIDs for arthritis. Splenectomy and rituxan both failed (2004). Did well on prednisone till summer 2018--then terrible reactions. Promacta since 11-19.
  • Posts: 464
  • Thank you received: 58
I'm tuning in late on this thread. DR, do you have any difficult side-effects with any of these drugs?
The following user(s) said Thank You: drbean7218

Please Log in or Create an account to join the conversation.

(18 July 2020) My platelet count was 237 2 years 2 months ago #69510

  • drbean7218
  • Offline
  • Posts: 195
  • Thank you received: 9

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.

Please Log in or Create an account to join the conversation.

(17 Aug 2020) My platelet count was 255 2 years 3 weeks ago #69773

  • drbean7218
  • Offline
  • Posts: 195
  • Thank you received: 9
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)

Please Log in or Create an account to join the conversation.

(14 Nov 2020) My platelet count was 273 1 year 10 months ago #70252

  • drbean7218
  • Offline
  • Posts: 195
  • Thank you received: 9
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)
The following user(s) said Thank You: Manish1

Please Log in or Create an account to join the conversation.

(14 Nov 2020) My platelet count was 273 1 year 10 months ago #70264

  • MelA
  • Offline
  • Posts: 1013
  • Karma: 2
  • Thank you received: 337
You are no longer on prednisone?
your count is steady - that is good
"Instead of wasting your time worrying about symptoms, just get it checked out" -Nieca Goldberg, MD
The following user(s) said Thank You: drbean7218

Please Log in or Create an account to join the conversation.

(14 Nov 2020) My platelet count was 273 1 year 10 months ago #70266

  • mrsb04
  • Away
  • 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.
  • Posts: 2021
  • Karma: 7
  • Thank you received: 575
Hopefully be able to start reducing Azathioprine and/or Cyclosporine soon
The following user(s) said Thank You: drbean7218

Please Log in or Create an account to join the conversation.

(14 Nov 2020) My platelet count was 273 1 year 10 months ago #70272

  • drbean7218
  • Offline
  • Posts: 195
  • Thank you received: 9

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.

Please Log in or Create an account to join the conversation.

(14 Nov 2020) My platelet count was 273 1 year 10 months ago #70273

  • drbean7218
  • Offline
  • Posts: 195
  • Thank you received: 9

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)

Please Log in or Create an account to join the conversation.

(14 Nov 2020) My platelet count was 273 1 year 10 months ago #70277

  • mrsb04
  • Away
  • 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.
  • Posts: 2021
  • Karma: 7
  • Thank you received: 575
Personally I would rather be on Eltrombopag than either Azathioprine or Cyclosporine

Please Log in or Create an account to join the conversation.

(14 Nov 2020) My platelet count was 273 1 year 10 months ago #70283

  • MelA
  • Offline
  • Posts: 1013
  • Karma: 2
  • Thank you received: 337

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."
"Instead of wasting your time worrying about symptoms, just get it checked out" -Nieca Goldberg, MD
The following user(s) said Thank You: drbean7218

Please Log in or Create an account to join the conversation.

(14 Nov 2020) My platelet count was 273 1 year 10 months ago #70287

  • drbean7218
  • Offline
  • Posts: 195
  • Thank you received: 9

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
The following user(s) said Thank You: MelA

Please Log in or Create an account to join the conversation.

(14 Nov 2020) My platelet count was 273 1 year 9 months ago #70293

  • MelA
  • Offline
  • Posts: 1013
  • Karma: 2
  • Thank you received: 337
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 :) )
"Instead of wasting your time worrying about symptoms, just get it checked out" -Nieca Goldberg, MD

Please Log in or Create an account to join the conversation.

(14 Nov 2020) My platelet count was 273 1 year 9 months ago #70298

  • drbean7218
  • Offline
  • Posts: 195
  • Thank you received: 9
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.

Please Log in or Create an account to join the conversation.

(14 Nov 2020) My platelet count was 273 1 year 9 months ago #70302

  • mrsb04
  • Away
  • 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.
  • Posts: 2021
  • Karma: 7
  • Thank you received: 575
Have you asked why you are being kept on these medications?
The following user(s) said Thank You: drbean7218

Please Log in or Create an account to join the conversation.

Charity NavigatorGuideStar Seal NORD Member BadgeTHSNA logo