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(14 Nov 2020) My platelet count was 273 5 months 1 week ago #70303

  • MelA
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I know Hong Kong doctors don't like to be questioned.
Can you discuss the need for the Famotidine & the high dose of Folic Acid with him? You are an expat?
"Instead of wasting your time worrying about symptoms, just get it checked out" -Nieca Goldberg, MD
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(14 Nov 2020) My platelet count was 273 5 months 1 day ago #70343

  • drbean7218
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mrsb04 wrote: Have you asked why you are being kept on these medications?

I haven't asked my doctor yet, since each follow up consultation is very rush, mostly is completed within 5 mins. My doctor is very busy on the documents, if the report is fine, he doesn't talk too much.

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(12 Dec 2020) My platelet count was 270 5 months 1 day ago #70344

  • drbean7218
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The platelet count on 12 Dec 2020 was 270.

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 three days a week, only need to take drug on every Mon, Wed & Fri)
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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(12 Dec 2020) My platelet count was 270 5 months 1 day ago #70345

  • mrsb04
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  • Diagnosis of ITP in 2014. Retired (Nov 2019) renal specialist nurse, 46 years on the NHS front line. 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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drbean wrote I haven't asked my doctor yet, since each follow up consultation is very rush, mostly is completed within 5 mins. My doctor is very busy on the documents, if the report is fine, he doesn't talk too much.

Your doctor should be paying attention to you and not the documents. The whole idea is to treat the symptoms not the platelet count. Is your doctor up to date with the new guidelines that recommend an holistic approach?

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(12 Dec 2020) My platelet count was 270 5 months 23 hours ago #70347

  • MelA
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mrsb I totally agree with you - my new hematologist has told me in a phone visit he doesn't treat a number on paper he treats the patient. However drbean is in Hong Kong, it's a different world. I was fortunate when living there that I could use private doctors thanks to my husband's company - I believe drbean has the public healthcare. I made friends with a woman [a Brit married to a Chinese] in Hong Kong, her daughter had ITP & eventually a splenectomy while young - my friend ended up with many health issues and has since passed away, she had quite a time with medical care.
"Instead of wasting your time worrying about symptoms, just get it checked out" -Nieca Goldberg, MD

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Is that the signal of low platelet count 3 months 3 weeks ago #70515

  • Columbia09
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I read somewhere orange / circus type of fruits have the effect fighting against the function of platelet. You can google and see if this is the case.

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Is that the signal of low platelet count 3 months 3 weeks ago #70517

  • MelA
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It would be helpful Columbia if you could find it and cite it for us.
I have never heard of this before.
Thank you!
"Instead of wasting your time worrying about symptoms, just get it checked out" -Nieca Goldberg, MD

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Is that the signal of low platelet count 3 months 3 weeks ago #70518

  • Columbia09
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It's grape / grape juice which inhibits the platelet activity. Sorry for the confusion. Below is the title of a piece of research article and weblink.

Grape Juice but Not Orange or Grapefruit Juice Inhibits Platelet Activity inDogs and Monkeys
(Macaca fasciularis)1,2Hashim E. Osman, Nabil Maalej, Dhanansayan Shanmuganayagam and John D. Folts3
University of Wisconsin Medical School Madison, WI, 53792

www.researchgate.net/publication/13420332_Grape_Juice_but_Not_Orange_or_Grapefruit_Juice_Inhibits_Platelet_Activity_in_Dogs_and_Monkeys_Macaca_fasciularis
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Is that the signal of low platelet count 3 months 3 weeks ago #70520

  • mrsb04
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Is that the signal of low platelet count 3 months 3 weeks ago #70521

  • MelA
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What is funny is I never ate many tomatoes before reading the pdsa warning about them - then I craved them! :) I eat a lot of tomatoes (BLT sandwiches, in salads...) - always have loved onions and have not taken them out of my diet - did add cranberry juice after a UTI. What did cause a problem was the vitamin E in a multi vitamin so I no longer take it.
"Instead of wasting your time worrying about symptoms, just get it checked out" -Nieca Goldberg, MD

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Is that the signal of low platelet count 3 months 3 weeks ago #70522

  • CindyL
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I only use the food list of no-no's for the stuff I don't like! I refuse to give up my onions and tomatoes. We don't use a lot of garlic and can't drink cranberry juice due to one of my medications.

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Is that the signal of low platelet count 3 months 3 weeks ago #70523

  • mrsb04
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  • Diagnosis of ITP in 2014. Retired (Nov 2019) renal specialist nurse, 46 years on the NHS front line. 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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Me too Cindy. I do stick to the calcium rules for Eltrombopag but dark chocolate is full of iron which I need. Tomatoes are full of Vitamin C which helps with iron absorption.
In my opinion ditching everything that may or may not be bad for my platelets it putting ITP totally charge of my life and that is not going to happen.

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Is that the signal of low platelet count 3 months 3 weeks ago #70524

  • MelA
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Amen Cindy & mrsb!! Too funny Cindy you use the food list for the things you don't like! I refuse to give up onions - a hamburger without onions is like a day without sunshine - oh and can never have enough garlic either, how bland would spaghetti sauce be without garlic?! And you are right mrsb, can't let ITP be totally in charge of our lives, we must live and enjoy too!!
"Instead of wasting your time worrying about symptoms, just get it checked out" -Nieca Goldberg, MD
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(6 Mar 2021) My platelet count was 177 2 months 1 week ago #70805

  • drbean7218
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The platelet count from 9 Jan to 6 Mar 2021 are as follows;
9/1/2021 255
6/2/2021 224
6/3/2021 177

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 (take drug on each Thursday only)
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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(6 Mar 2021) My platelet count was 177 2 months 1 week ago #70807

  • mrsb04
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  • Diagnosis of ITP in 2014. Retired (Nov 2019) renal specialist nurse, 46 years on the NHS front line. 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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This is interesting Dr Bean you have reduced Eltrombopag and your count has come down. Maybe that is what is holding it up rather than the Cyclosporine or Azathioprine.
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(6 Mar 2021) My platelet count was 177 2 months 5 days ago #70819

  • drbean7218
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It's an interesting point, that's different with my previous treatment.
My doctor was on leave last time, another doctor still said that it was normal.

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(27 Mar 2021) My platelet count was 184 1 month 2 weeks ago #70944

  • drbean7218
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My platelet count on 27 Mar 2021 was 184.

The combination of my treatment is remain unchanged.
a. Cyclosporine A - 200 mg daily (am: 100 mg, pm: 100 mg)
b. Azathioprine - 75 mg
c. Eltrombopag - 25 mg (take drug on each Thursday only)
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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(27 Mar 2021) My platelet count was 184 1 month 2 weeks ago #70949

  • MelA
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You know that is a super count, for anyone!
Did the doctor say why you are not being tapered off any of the med?
"Instead of wasting your time worrying about symptoms, just get it checked out" -Nieca Goldberg, MD
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(27 Mar 2021) My platelet count was 184 1 month 2 weeks ago #70956

  • mrsb04
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  • Diagnosis of ITP in 2014. Retired (Nov 2019) renal specialist nurse, 46 years on the NHS front line. 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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Dr Bean
It appears your doctor is treating your platelet counts not your symptoms.
Guidelines now state to maintain a count of 20-30 and to only use medical therapy when it is necessary to prevent severe bleeding.
This video explains the current guidelines www.youtube.com/watch?v=lcC329pd-fY
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(27 Mar 2021) My platelet count was 184 1 month 2 weeks ago #70965

  • MelA
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Being on govt insurance may be the difference mrsb - I was fortunate to be on private insurance when we lived in Hong Kong.
"Instead of wasting your time worrying about symptoms, just get it checked out" -Nieca Goldberg, MD

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(27 Mar 2021) My platelet count was 184 1 month 2 weeks ago #70973

  • mrsb04
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You would think in that case Mel that there would be less spent on meds

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(27 Mar 2021) My platelet count was 184 1 month 2 weeks ago #70975

  • poseymint
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MrsB~ I love the video you posted!! I have never heard Dr Drew Proven speak before. He is the best. For anyone who hasn't watched the video, Dr Drew Proven is an ITP expert from the UK and the author of the International ITP Guidelines. Such great information, so clear, intelligent and well thought out. He calls for doctors to consider the patient's quality of life when the patient and doctor together decide on treatments. Thank you so much for posting this very important video!
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(27 Mar 2021) My platelet count was 184 1 month 1 week ago #71002

  • drbean7218
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MelA wrote: You know that is a super count, for anyone!
Did the doctor say why you are not being tapered off any of the med?

Its my call after an discussion with my doctor. My doctor said that he is satisfied with my count, his expectation was the count within 50-100, I have been given more than that.

However, I've done an research and traced my medical record. I found that if total dose of Cyclosporine A was below 75 mg per day, my immune system can't be suppressed, the platelet count will be crashed very quickly.

If you look at my result in past 3-4 blood test, it was a decreasing trend of my platelet count, it would be better if we observe one more month to taper my med.

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(27 Mar 2021) My platelet count was 184 1 month 1 week ago #71003

  • drbean7218
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mrsb04 wrote: Dr Bean
It appears your doctor is treating your platelet counts not your symptoms.
Guidelines now state to maintain a count of 20-30 and to only use medical therapy when it is necessary to prevent severe bleeding.
This video explains the current guidelines www.youtube.com/watch?v=lcC329pd-fY

For my case, when immune system is disorder, the platelet count is dropped to single digit around 1-2 weeks, but it takes 1-2 months with high dose of meds to make the immune system stable or suppressed.

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(27 Mar 2021) My platelet count was 184 1 month 1 week ago #71005

  • karenr
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I finally saw the video of DR. Proven (good name!) explaining ITP therapies. Thank you, Mrs. B, for posting it and PoseyMint for reminding us of it. My counts on Tavalisse have been in the 200s, which worries me, but not my hematologist. I am on a blood thinner, Pradaxa, so perhaps it is good to have more platelets than necessary. I'm also on a decreasing amount of prednisone, but I don't think that has been affecting my platelet counts--down now to alternating 5.5 and 5 mg/day. And I do feel so much better--I guess because the pred is lower.

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(27 Mar 2021) My platelet count was 184 1 month 1 week ago #71006

  • mrsb04
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Dr Bean
Do you have any symptoms when your count is lower?

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(27 Mar 2021) My platelet count was 184 2 weeks 2 days ago #71134

  • drbean7218
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mrsb04 wrote: Dr Bean
Do you have any symptoms when your count is lower?

When the platelet count is below 50, then I will find bruise in arms and legs

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(24 Apr 2021) My platelet count was 179 2 weeks 2 days ago #71135

  • drbean7218
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My platelet count was 179 on 24 Apr 2021

The combination of my treatment:
a. Cyclosporine A - 200 mg daily (am: 100 mg, pm: 100 mg)
b. Azathioprine - 75 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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