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(23 Mar 2024) My platelet count was 174
- drbean7218
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My doctors don't have any plans to drop the eltrombopag dose below 25 mg per day, since my platelet was out of normal range in last two blood test. At this moment, everything remain unchanged will be the best option.
On the other hand, I am trying to change my lifestyle not to make me feeling stress.
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- drbean7218
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journals.sagepub.com/doi/full/10.1177/2040620717693573
My treatment is doing in two ways:
1. Boost bone marrow to produce more platelets
2. Compress strength of immune system and try to minimize the system wrongly attack the platelets.
My doctors concluded that the possible cause of my case was immune system disorder, which is wrongly attacking the platelets, rather than insufficient production of platelets.
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- Sandi
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- Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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- drbean7218
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1. My doctors performed different body checks on me in 20 days, they tried to sort out the most possible cause of ITP in my case, but the result of different tests were normal, even my spleen and bone marrow. Therefore, my doctors concluded that the most possible cause of my case was due to flu and made the immune system disorder.
2. I have tried different medicines to compress the strength of the system, but most of them even prednisolone have no impact on me. Cyclosporine A is the one have impact on me, but it can't stand alone at the minimum dosage in my case.
My doctor suggested me performing splenectomy, but the successful rate is 66%.
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- Hal9000
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- Give me all your platelets and nobody gets hurt
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- drbean7218
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Since my platelet count didn't back to normal range, that didn't convince my doctors to reduce the doses of Cyclosporine, then promacta afterwards.
At the same time, my doctors didn't want to take risk which may make my platelet crashed again, and the whole treatment back to starting point with high doses of Cyclosporine and 5x-6x bottles of ivig.
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- Hal9000
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- Give me all your platelets and nobody gets hurt
drbean7218 wrote: ... At the same time, my doctors didn't want to take risk which may make my platelet crashed again, and the whole treatment back to starting point with high doses of Cyclosporine and 5x-6x bottles of ivig.
drbean, I find your case, as I understand it, extraordinary.
There seems to be a class/set of ITP folks who have no steroid response and a weak IVIG response (eg 49). You appear to fall into that group. From PDSA member reports on this forum, many of those in that group have found relief with higher dose NPlate/Promacta, or, regular IVIG treatments when/if NPlate fails. But your doctor seems to have found another alternative - the Cyclosporine and low dose (25 mg) Promacta combination. Nice!
The bad thing is that the combination doesn't seem to lead to remission. Tapering off Cyclosporine is leading to collapsed counts for you. There doesn't seem to be a way to get the immune system to unlearn antibodies against the Thrombopoietin Receptor .
Has your doctor considered going to 50 to 75 mg of Promacta only?
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- Sandi
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drbean7218 wrote: My doctor didn't try Cyclosporine without Promacta.
Since my platelet count didn't back to normal range, that didn't convince my doctors to reduce the doses of Cyclosporine, then promacta afterwards.
But counts shouldn't be in the normal range with Promacta. The dose should be adjusted to keep the count around 50k.
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- drbean7218
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- drbean7218
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Unfortunately, I was hospitalized again due to Hemoglobin dropped to 6.6. My doctor said that they find antibodies in my red blood cells.
The combination of my treatment:
a. Cyclosporine A - 50 mg daily
b. Eltrombopag - 25 mg daily
c. Prednisone - 50 mg daily
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- mrsb04
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Promacta could be increased if platelet count drops below the recommended target count of 50.
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- drbean7218
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My doctor said the reason of high platelet was due the effect of cyc-a and promacta. He didnt have intention to reduce the dose this time.
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- mrsb04
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- drbean7218
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My doctors attributes to the extension attack by the immune system based on the foundings of antibodies in the red blood cells.
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- Hal9000
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- Give me all your platelets and nobody gets hurt
Combination immunosuppressant therapy for patients with chronic refractory immune thrombocytopenic purpura
www.bloodjournal.org/content/115/1/29.full?sso-checked=true
"
The rationale for combination immunosuppressants is to target multiple pathways to inhibit the pathologic platelet autoantibody with minimal overlapping toxicities. In that way, lower doses can be used.
"
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- drbean7218
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Just a quick update of combination of my treatment after discharge
a. Cyclosporine A - 50 mg daily
b. Eltrombopag - 25 mg daily
c. Prednisone - 15 mg daily
d. Folic acid - 5 mg daily
e. Famotidine - 20 mg daily
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- mrsb04
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- drbean7218
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Hemoglobin rose to 12.3.
My doctor said that my CT scan and bone marrow biospy were normal. He diagnosed of Autoimmune Hemolytic Anemia (AIHA) with unknown reason of the immune system disorder.
The combination of my treatment:
a. Cyclosporine A - 50 mg daily
b. Eltrombopag - 25 mg daily
c. Prednisone - 12.5 mg daily
d. Folic acid - 5 mg daily
e. Famotidine - 20 mg daily
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- drbean7218
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Hemoglobin rose to 13.9.
I will go to UK in the mid-Oct for two weeks, so that my doctor suggest the treatment remain unchanged.
The combination of my treatment:
a. Cyclosporine A - 50 mg daily
b. Eltrombopag - 25 mg daily
c. Prednisone - 12.5 mg daily
d. Folic acid - 5 mg daily
e. Famotidine - 20 mg daily
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- drbean7218
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Hemoglobin rose to 14.5.
The combination of my treatment:
a. Cyclosporine A - 50 mg daily
b. Eltrombopag - 25 mg daily
c. Prednisone - 10 mg daily (reduced 2.5 mg)
d. Folic acid - 5 mg daily
e. Famotidine - 20 mg daily
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- drbean7218
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The combination of my treatment:
a. Cyclosporine A - 50 mg daily
b. Eltrombopag - 25 mg daily
c. Prednisone - 7.5 mg daily (reduced 2.5 mg)
d. Folic acid - 5 mg daily
e. Famotidine - 20 mg daily
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- drbean7218
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The combination of my treatment:
a. Cyclosporine A - 50 mg daily
b. Eltrombopag - 25 mg daily
c. Prednisone - 5 mg daily (reduced 2.5 mg)
d. Folic acid - 5 mg daily
e. Famotidine - 20 mg daily
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- drbean7218
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My doctor didn't find any possible causes related to the platelet count crashed. I have stayed at hospital for 5 days and injected 5 round ivig. My platelet count increased to 156 after 4 rounds of ivig.
The combination of my treatment:
a. Cyclosporine A - 50 mg daily
b. Eltrombopag - 25 mg daily
c. Prednisone - 10 mg daily (increased 5 mg)
d. Folic acid - 5 mg daily
e. Famotidine - 20 mg daily
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- drbean7218
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After injection of 5 rounds of ivig, my platelet count dropped from 156 to 36 after a week, I was back to hospital again. However, my doctor didn't arrange any treatments for me this time. He only increased the dosage of Cyclosporine-A, then I was dispatched yesterday.
The combination of my treatment:
a. Cyclosporine A - 200 mg daily (increased 150 mg)
b. Eltrombopag - 25 mg daily
c. Prednisone - 10 mg daily
d. Folic acid - 5 mg daily
e. Famotidine - 20 mg daily
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- momto3boys
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drbean7218 wrote: My platelet count as at 6 Apr 2018 - 36.
After injection of 5 rounds of ivig, my platelet count dropped from 156 to 36 after a week, I was back to hospital again. However, my doctor didn't arrange any treatments for me this time. He only increased the dosage of Cyclosporine-A, then I was dispatched yesterday.
The combination of my treatment:
a. Cyclosporine A - 200 mg daily (increased 150 mg)
b. Eltrombopag - 25 mg daily
c. Prednisone - 10 mg daily
d. Folic acid - 5 mg daily
e. Famotidine - 20 mg daily
IVIg is definitely temporary, so it's not a surprise that your counts dropped back down after that treatment. It looks like you are on 3 different treatments for the ITP. You are on two immunosuppressants (Cyclosporine and Prednisone) and a TPO-RA - Eltrombopag. That is a lot of simultaneous treatment. Do you know which of those three treatments are actually doing anything for you. Prior to your last crash, it looks like your counts were quite high (higher than they should have been while on a TPO-RA like Eltrombopag). Do you think it was some kind of a virus or infection that triggered your crash? Whenever I get a crash I try to wait it out as long as I don't have active bleeding and most of the time my counts will rebound after some time passes.
I would want to figure out which of your treatments are actually working if I were you. Having 3 treatments going simultaneously is a lot of side effects that may just not be necessary. Regardless, a count of 36 is just fine, so hopefully you can keep the doctor from going crazy increasing everything until you get some kind of a trend going.
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- DeeDee Marie
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- drbean7218
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I was back to hospital again with hematuria. My doctor decided to use 5 rounds of ivig injection again and suggest me performing splenectomy.
I have read different articles, papers and other members' sharing, splenectomy isn't an favorable option. I am trying to think about the platelet and Hb crashed before may be due to stress & emotion.
The combination of my treatment:
a. Cyclosporine A - 200 mg daily
b. Eltrombopag - 25 mg daily
c. Prednisone - 10 mg daily
d. Folic acid - 5 mg daily
e. Famotidine - 20 mg daily
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- DeeDee Marie
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Dee Dee
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- Hal9000
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- Give me all your platelets and nobody gets hurt
I've mentioned it before. MMF might be good. Or even Danazol if your liver is tolerant to it. Danazol is the safer of the two as far as I know. I wonder if either of those could replace two of the drugs your taking: Promacta and Prednisone.
In any case, good luck with it.
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- mrsb04
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Your adrenal glands are probably not producing any cortisol to help you because of your steroids.
Maybe up your pred dose for a few days to see if that brings your count up. I've found that works for me. Then I drop the pred back to where I was.
I'm not parting with my spleen. Like Dee Dee Marie I'm over 60 so not risking it.
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