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(5 Mar 2022) My platelet count was 150
- MelA
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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
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- drbean7218
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Thank you for your reply.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?
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
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- mrsb04
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- 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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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?
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- drbean7218
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My doctor just briefly tell me about the test, it may be ACTH stimulation test.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?
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.
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- Hal9000
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- Give me all your platelets and nobody gets hurt
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.
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- drbean7218
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I have discussed with my doctor, he mentioned there was no new drug available in Hong Kong for ITP.
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- drbean7218
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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)
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- drbean7218
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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)
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- mrsb04
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- mrsb04
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- MelA
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Is this a private doctor in HK?
"Instead of wasting your time worrying about symptoms, just get it checked out" -Nieca Goldberg, MD
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- drbean7218
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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.
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- mrsb04
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Hopefully you will not suffer horrid withdrawal symptoms like I did.
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- drbean7218
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Thanks for your information. I'll confront it optimistically.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.
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.
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- drbean7218
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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)
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- karenr
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- 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.
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The side effects are gain weight and severe acne on my face.karenr wrote: I'm tuning in late on this thread. DR, do you have any difficult side-effects with any of these drugs?
For acne, it seems better with Traditional Chinese medicine and acupuncture.
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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)
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- drbean7218
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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)
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- MelA
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your count is steady - that is good
"Instead of wasting your time worrying about symptoms, just get it checked out" -Nieca Goldberg, MD
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- mrsb04
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- drbean7218
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Yes, you are right. Prednisone has been removed from my medical treatment since 17/10/2020.MelA wrote: You are no longer on prednisone?
your count is steady - that is good
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- drbean7218
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Our plan is reducing Eltrombopag first, then Azathioprine and/or Cyclosporine.mrsb04 wrote: Hopefully be able to start reducing Azathioprine and/or Cyclosporine soon
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)
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- mrsb04
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- MelA
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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."
"Instead of wasting your time worrying about symptoms, just get it checked out" -Nieca Goldberg, MD
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- drbean7218
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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
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- MelA
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(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
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- drbean7218
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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.
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- mrsb04
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