TOPIC:

DeeDee wrote:

Dr. Bean,
This is impressive!! Your counts are finally coming around and in the normal range! So you did seek a second opinion?? I'm sure glad
things have changed for the better. Could you explain what the Anti lb/IX in your blood is? Is it showing you have infection in your blood that
needs to be resolved?? Really curious to know. Thanks and so happy you are doing better.
DeeDee

Thank you for your reply.

I sought a second opinion because our doctors from Prince Wales Hospital (PWH) force me to decide whether to perform splenectomy or increase the dose of eltrombopag after 5 times injection of ivig in three months and taking high dose of medicines seems no effect for a long time.

Therefore, I sought second opinion from a private doctor, who was ex-department Head of Hematology and Oncology in Queen's Mary Hospital. He gave another perspective of my case.

He implied that splenectomy is not an option, since the no. of platelets must increase for a short period of time, after that it will be dropped when the function of the spleen are shared by other organs.

He urged me to decrease to the dose of medicines as soon as possible, since its too much and too high, also he introduced the lab test for checking antibodies in my platelet. This test can be done only at Queen's Mary Hospital in Hong Kong, I was shocked that the doctors at PWH didn't refer me to perform this test in last seven years, even both hospitals are managed by Hospital Authority.

Anti lb/IX found in my platelet that confirmed my case of low platelets was caused by immune system disorder rather the issue of production of platelets. There are several antibodies can be detected by this test, and Anti lb/IX is much much difficult to handle, that's one of the reasons that my platelets count could not stable after 5 times injection of ivig and high dose of medicines.

Ultimately, my private doctor suggested me to inject 500 mg of rituximab to make platelet count stable for 2-3 yrs, but the doctors from PWH advise me to take 800 mg of rituximab due to my weight. I think the cost of rituximab is too expensive and the result is unpredictable, also my platelet count was stable finally, so I didn't inject rituximab.

MelA wrote:

You are still taking Acyclovir?

Are you doing acupuncture?

I am still taking Acyclovir that was an precaution of shingles.

Also, I am still doing acupuncture and taking Chinese medicines each week. My doctor will make adjustment on the dose of medicines based on result of my blood test.

Hal9000 wrote:

DrBean, glad you were able to increase that Eltrombopag dose from 25 mg to 50 mg!
Really made a big difference. It was just what was needed.

To increase the dose of Eltombopag was not my intention, since my doctors felt desperate after 5 times injection of ivig, and it seems to be crashed again.

They forced me to choose either splenectomy or increase the dose of Eltombopag that time. Fortunately, the platelet count didn't crash as expected.

drbean - I can't believe you are still on Acyclovir, for shingles the dose is for 7-10 days - they have you taking it to prevent shingles? Didn't know the antiviral would/could prevent it
I find MedlinePlus a good place to look up drugs & supplements medlineplus.gov/druginformation.html
Acyclovir:
medlineplus.gov/druginfo/meds/a681045.html

Love what your private doctor said about a splenectomy
"He implied that splenectomy is not an option, since the no. of platelets must increase for a short period of time, after that it will be dropped when the function of the spleen are shared by other organs."
Most forget or don't think of the other places in the body that clean the blood just as the spleen cleans the blood.

I guess I was lucky when we lived in Hong Kong that the company gave us private insurance - however my Brit trained hematologist would panic any time my count came back real low and want to remove my spleen, which I always declined.

I'm not sure about my problem either since I've never had the test done. I would say I probably have an immune disorder since I have other problems with medications and blood disorders run in my family (my father and brother died of different ones). I do know that the IVIG helps me and the Decadron pulses.

DeeDee Marie

MelA wrote:

drbean - I can't believe you are still on Acyclovir, for shingles the dose is for 7-10 days - they have you taking it to prevent shingles? Didn't know the antiviral would/could prevent it
I find MedlinePlus a good place to look up drugs & supplements medlineplus.gov/druginformation.html
Acyclovir:
medlineplus.gov/druginfo/meds/a681045.html

Love what your private doctor said about a splenectomy
"He implied that splenectomy is not an option, since the no. of platelets must increase for a short period of time, after that it will be dropped when the function of the spleen are shared by other organs."
Most forget or don't think of the other places in the body that clean the blood just as the spleen cleans the blood.

I guess I was lucky when we lived in Hong Kong that the company gave us private insurance - however my Brit trained hematologist would panic any time my count came back real low and want to remove my spleen, which I always declined.

It's true. I am still taking Acyclovir at that dose for preventing shingles

The platelet count on 18 Jan 2020 was 245

The combination of my treatment:
a. Cyclosporine A - 250 mg daily (am: 125 mg, pm: 125 mg)
b. Azathioprine - 75 mg
c. Eltrombopag - 50 mg daily
d. Prednisone - 12.5 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)

That is a high dose of Acyclovir for preventing shingles. When on chemo I was taking just 200 mg three times a day which is the usual prevention dose at my hospital.

That was my thought too JJ - especially with the site I listed above saying "Some side effects can be serious" and then these 2 listed:
unusual bruising or bleeding
blood in the urine

drbean7218 wrote:

...
Anti lb/IX found in my platelet that confirmed my case of low platelets was caused by immune system disorder rather the issue of production of platelets. There are several antibodies can be detected by this test, and Anti lb/IX is much much difficult to handle, that's one of the reasons that my platelets count could not stable after 5 times injection of ivig and high dose of medicines.

For what it is worth, I agree. The GPIb-IX antibody does make treatment difficult (this is row 2 in my treatments table). It often shows up in less complicated cases around here as a loss of steroid response and/or loss of IVIG response where one used to have such a response.

It seems only Promacta/Nplate/Doptelet (TPO-RAs) work for this antibody. But it is also the easiest antibody to go into remission. Only overwhelming with platelets for awhile is required.

But I mostly disagree about platelet production not being a problem. IMHO, the fact that Cyclosporine is needed/required to raise counts is good evidence that platelet production / megakaryocytes are a problem.

Ultimately, my private doctor suggested me to inject 500 mg of rituximab to make platelet count stable for 2-3 yrs, but the doctors from PWH advise me to take 800 mg of rituximab due to my weight. I think the cost of rituximab is too expensive and the result is unpredictable, also my platelet count was stable finally, so I didn't inject rituximab.

I agree, Rituximab would be a waste of money here. For starters, because of the platelet production problem I described above.

Hope your counts continue to rise DrBean, and you will be forced to cut back on some of these drugs. Azathioprine and Prednisone come to mind.

Hal what is your theory on those who do not have any antibodies showing up?

Good question Mel.
JJ. Have just checked UK guidelines for prophylactic Acyclovir dosing:- 800mg a day in equally divided doses

I did say 'at my hospital' because these things vary.

JJ
I do realise that. I agree with you that it is a high dose for prophylactic use.

The platelet count on 1 Feb 2020 was 261

The combination of my treatment:
a. Cyclosporine A - 250 mg daily (am: 125 mg, pm: 125 mg)
b. Azathioprine - 75 mg
c. Eltrombopag - 50 mg daily
d. Prednisone - 10 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)

I discussed with my doctor today about the dose and necessity of taking Acyclovir. He has no intention to reduce the dose or withdraw due to the same reason as a precaution of shingles.

Well drbean you do what you have to do and what you feel is right for you.
I've had shingles 2x and never was it suggested I continue taking it, wonder why.
I don't recall the antiviral I was put on, last time (knock on wood) I had shingles was over 10 years ago.

Glad your count is doing well!

MelA wrote:

Hal what is your theory on those who do not have any antibodies showing up?

Melinda, I agree with the theory presented in this study from December 2016.
"Autoantibodies to Thrombopoietin and the Thrombopoietin Receptor in Patients with Immune Thrombocytopenia"
www.bloodjournal.org/content/128/22/2548?sso-checked=true
which now forwards to this address:
ashpublications.org/blood/article/128/22/2548/98448/Autoantibodies-to-Thrombopoietin-and-the

Basically the study says that everyone with ITP has one or more of exactly four possible antibodies. That is, those that used to be tested and found to not have antibodies actually have either 1) antibodies against TPO, or 2) antibodies against TPO receptors on Megakaryocytes. They, the authors of the study, created new tests which found these two new antibodies.

I think what happened is that early researchers had only discovered the two antibodies GPIIb-IIIa and GPIb-IX because they were only looking for antibodies on platelets. Turns out, those previously 'not found' antibodies were found on TPO and TPO receptors on Megakaryocytes.

GPIIb-IIIa and GPIb-IX are the platelet 'destruction' antibodies. The two new antibodies are antibodies against platelet 'production'.

It was this study that caused me to begin reading as many past posts on PDSA as I could. Trying to see if everyone with ITP could be pigeonholed in to just 4 basic treatment paths, or, some combination for those paths when more than one ITP antibodies might be at play.

Make sense?

The platelet count on 15 Feb 2020 was 354

The combination of my treatment:
a. Cyclosporine A - 250 mg daily (am: 125 mg, pm: 125 mg)
b. Azathioprine - 75 mg
c. Eltrombopag - 25 mg on Monday & Thursday, 50 mg for the rest of the week
d. Prednisone - 7.5 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)

Now that I've been on low dose Danazol for over a year and it hasn't raised baseline counts, I'm thinking about what drug I might try next. MMF comes to mind (see row 3 in my treatments table). Did some research on taking it. Yikes. Looks like MMF could well allow every Herpes virus I might be afflicted with to run rampant and unchecked by my immune system. Good grief! For example. Like Prednisone, one can have an outbreak of Shingles while on it. Also, an EBV relapse could happen and become chronic, causing one to always have a tired feeling. See Chronic Fatigue Syndrome.

So, if I try MMF, I would surely do what DrBean is doing. Only take MMF along with a good strong daily dose of Acyclovir.

Your doctor seems to be very experienced DrBean. Thanks for the lesson.

On a side note, that I read along the way. Another treatment for a severe outbreak of Shingles is IVIG. Apparently it is full of antibodies for Shingles.

Carry on and never give up!

The platelet count from 29 Feb 2020 to 28 Mar 2020 are as follows;
29 Feb 2020 229
14 Mar 2020 282
28 Mar 2020 304

The combination of my treatment:
a. Cyclosporine A - 200 mg daily (am: 100 mg, pm: 100 mg)
b. Azathioprine - 75 mg
c. Eltrombopag - 50 mg on Tuesday & Friday, 25 mg for the rest of the 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)

Why do you use Acyclovir ? isn't that an antiviral drug?
btw, any major side effect of this combo?

The acyclovir is to guard against shingles.

Gosh 304..I'd be scared stiff if my count was that high. I get worried if it reaches 100

I'm with mrsb.
But I don't know what you are trying to attain - what is your goal drbean?

Lman wrote:

Why do you use Acyclovir ? isn't that an antiviral drug?
btw, any major side effect of this combo?

Thank you for your question.
I use Acyclovir as a precaution of shingles, since I had shingles around six months before.
Major side effect of this combo are acne on my face and easily to be infected.

MelA wrote:

I'm with mrsb.
But I don't know what you are trying to attain - what is your goal drbean?

I am not trying to attain a high platelet count or other thing.

The high platelet count is out of my expectation, it may be an combination effect from my
Hematology doctor, family doctor and Chinese Medicine Practitioner.

My objective is very simple, just not to be hospitalized.

The platelet count on 25 Apr 2020 was 253

The combination of my treatment:
a. Cyclosporine A - 200 mg daily (am: 100 mg, pm: 100 mg)
b. Azathioprine - 75 mg
c. Eltrombopag - 50 mg on Friday only, 25 mg for the rest of the 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)

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?

The trouble with taking many drugs at the same time is that you don't know which one is working. So you might be doing harm to your body by taking a drug that isn't effective. Like the previous reply and given the current challenges of COVID, I think I would be trying to come off the immuno-suppressants rather than the eltrombopag. I would also be concerned about taking 7 drugs at the same time because of the possible interactions.
However, like Trump, I am not a qualified Dr, so don't go injecting bleach or sitting under sunlamps on my recommendation