After 10 months of Eltrombopag my family member’s PNH Clone went from 87% to 5%! But the clone is back up after stopping Eltrombopag. Where can we report this?
My daughter is suffering from Aplastic anemia with small PNH clone detected. My daughter is taking cyclosporine 300mg Daily and danazol 500mg daily ME 12, 4month complete taking treatment. But still not well please guide treatment without ATG, or BMT.
Thank you for reaching out to us. Was your daughter treated with ATG before taking the cyclosporine and danazol? Another medication used to treat aplastic anemia is Eltrombopag. You can find out more about common aplastic anemia treatments here: www.aamds.org/diseases/aplastic-anemia/treatment . You can always email out patient education team at help@aamds.org. This recording may also be useful: www.aamds.org/webinar/ask-pediatric-expert .
It seems like this is a form of cancer but no one says that . My feratin is really low and i have multiple symptoms of pnh. Trying to figure out if cbc sheds light or rules it out because i know I've had that done. I feel like i will need to present a lot of data if i want my doctor to order and Medicare to cover exploration of my mystery disease. Fertilizing cancer cells would be bad. Can't you test the cells in an isolated environment to see how each patient reacts or does not react? Its a mutation so i could be a mutant so that's neat. I havent ben avle to f it nd oit if anemic seizure or spasms go along with it. And if bone spurs and arthritis are possible indicators.
Thank you for your comments. Aplastic anemia and PNH are not cancer. PNH is diagnosed by a flow cytometry test. All aplastic anemia patients should be tested for PNH. If you have any other questions or concerns, please email our patient educator as she can answer your questions, clark@aamds.org or call 800-747-2820 x140.
My daughter has PNH, an autoimmune and rare bone marrow disease. I have many autoimmune diseases myself and read that if you have one then it is a 25% chance that someone close to you will have one. She was finally diagnosed last year but had been sick for about 12 years before there was a correct diagnosis. It began with severe abdominal pain which no one seemed to understand what it was. She had heavy periods but I did too growing up. It was confusing because last year she began having blood in her urine and bowel movements. After several transfusions doctor's came to the conclusion that was PNH. Kaitlynn has severe fatigue, body pain, nausea, and painful neuropathy in her feet. ❤️Kaitlynn's Struggle With PNH ❤️
Thank you for asking, Ramon. Stem cell transplantation/bone marrow transplantation is an option that is considered in many patients. This particular recording discusses treatments that may be chosen that are not transplantation. Each patient is different, so these difficult decisions are made with the patient and the whole health care team.
Sir my brother is suffering from aplastic anaemia and is PNH positive also..Recently he diagnosed with this.Due to fluctuation in his cells..He has gone through ATG treatment as we didnt got any donar for him..Please help me what we should do to get rid of it
2020, 4 years later, this drug is working for me at 55yrs old and no cyclosporine (due to kidney disease) platelet numbers still low, but they function now, hemoglobin holding at 8
Congratulations! So glad it's working for you. The 2020 Patient webinars will be starting soon, so please watch this link to learn when they are posted: www.aamds.org/education/courses
Hello, Tow, we hope you are feeling well today. Across the website, aamds.org, you can find out about various treatment strategies to treat aplastic anemia and other bone marrow failure diseases. You can also use the glossary to learn more about particular medications. Get started here: www.aamds.org/diseases/aplastic-anemia, and feel free to reach out to the patient advocate at help@aamds.org.
Hi Reeja - Excellent Question. Eltrombopag is currently only approved in the US to be used in combination with ATG and Cyclosporine. However, it is currently in clinical trials for first line therapy as a single treatment in the US. It is always best to consult the patients treating physician regarding treatments options.
Is it available here in Philippines? My 9 Yr old son Is diagnosed with AA. He's Dr. Said we don't have any choice but bmt but we cannot afford it. Dont know what to do now.
Hello, Swopna, There are many factors that the specialist uses to determine the best form of treatment for each patient. You can see another specialist for a second opinion if you would like to have more guidance. Each patient's case is different. Please send further questions to help@aamds.org, and we hope you will be feeling better soon.
my dad has sideroblastic anemia he has it for 6 years now he take a lot of blood transition and now I think it is not working anymore and also we didn't find a Donor what should we do know...? is this treatment good for my dad..?
The standard drug therapy options for treating aplastic anemia in the US is ATG with cyclospoprine and Eltrombopag when needed. The only known possible cure is a transplant. For PNH, the US FDA approved therapies are US are Soliris or Ultromiris. There are several clinical trials available, www.clinicaltrials.gov. If you have more questions, please contact us, help@aamds.org or call 800-747-2820 x140.
I am 56 and was diagnosed w/ aplastic anemia almost a year ago. I got an intraveinous treatment for 4 days, I don't remember what that was called. I've been on Promacta, cyclosporine and acyclovir ever since. They laid some ground work for transplant but my sister was not a match. I kept taking the promacta, cyclosporine and acyclovir and after 4 or 5 months and several transfusions my counts started coming up. My labs now show mostly normal except the red blood cells have been slowly getting out of "low" range. also my hemoglobin is borderline. My doctor thinks a transplant is too dangerous now. I am hopeful I will be putting this behind me. But its nearly ruined my life.
Hi Gar - thank you for sharing your story. You have had quite a journey. If you are interested, we do host monthly virtual support groups which you may find helpful. This is an excellent opportunity to talk with other patients, www.aamds.org/support/community-events/support-groups. At our virtual July Patient and Family Conference, Dr. Patel will discuss relapsed/refractory aplastic anemia - this would be a good chance to ask her some questions about your medical concerns. Here is a link for more information on the conference and to register, aamdsif.salsalabs.org/summer2021globalpfc/index.html.
After 10 months of Eltrombopag my family member’s PNH Clone went from 87% to 5%! But the clone is back up after stopping Eltrombopag. Where can we report this?
Hi, we will respond tomorrow, thanks
Thank you for reaching out to us. Your family member should report any changes to their medical team.
My daughter is suffering from Aplastic anemia with small PNH clone detected. My daughter is taking cyclosporine 300mg Daily and danazol 500mg daily ME 12, 4month complete taking treatment. But still not well please guide treatment without ATG, or BMT.
Thank you for reaching out to us. Was your daughter treated with ATG before taking the cyclosporine and danazol? Another medication used to treat aplastic anemia is Eltrombopag.
You can find out more about common aplastic anemia treatments here: www.aamds.org/diseases/aplastic-anemia/treatment .
You can always email out patient education team at help@aamds.org.
This recording may also be useful: www.aamds.org/webinar/ask-pediatric-expert .
It seems like this is a form of cancer but no one says that . My feratin is really low and i have multiple symptoms of pnh. Trying to figure out if cbc sheds light or rules it out because i know I've had that done. I feel like i will need to present a lot of data if i want my doctor to order and Medicare to cover exploration of my mystery disease. Fertilizing cancer cells would be bad. Can't you test the cells in an isolated environment to see how each patient reacts or does not react? Its a mutation so i could be a mutant so that's neat. I havent ben avle to f it nd oit if anemic seizure or spasms go along with it. And if bone spurs and arthritis are possible indicators.
Thank you for your comments. Aplastic anemia and PNH are not cancer. PNH is diagnosed by a flow cytometry test. All aplastic anemia patients should be tested for PNH. If you have any other questions or concerns, please email our patient educator as she can answer your questions, clark@aamds.org or call 800-747-2820 x140.
My Mom is 74 y/0 fit, with controlled hypertention . What is your judgement on getting ATG cyclosporine?in addition for eltrombopag? Thank you
My daughter has PNH, an autoimmune and rare bone marrow disease. I have many autoimmune diseases myself and read that if you have one then it is a 25% chance that someone close to you will have one. She was finally diagnosed last year but had been sick for about 12 years before there was a correct diagnosis. It began with severe abdominal pain which no one seemed to understand what it was. She had heavy periods but I did too growing up. It was confusing because last year she began having blood in her urine and bowel movements. After several transfusions doctor's came to the conclusion that was PNH. Kaitlynn has severe fatigue, body pain, nausea, and painful neuropathy in her feet. ❤️Kaitlynn's Struggle With PNH ❤️
Has anyone with PNH taking low dose Naltrexone (LDN) to help balance their body again? I am taking it for my autoimmune s.
How about stem cell tharapy it well work in aplastic anemia thanks you
Thank you for asking, Ramon. Stem cell transplantation/bone marrow transplantation is an option that is considered in many patients. This particular recording discusses treatments that may be chosen that are not transplantation. Each patient is different, so these difficult decisions are made with the patient and the whole health care team.
Hello contact me urgently i have medicine my number is mine DP pic ping me in watsup
Sir my brother is suffering from aplastic anaemia and is PNH positive also..Recently he diagnosed with this.Due to fluctuation in his cells..He has gone through ATG treatment as we didnt got any donar for him..Please help me what we should do to get rid of it
Hello Chand contact me i will help you urgently
2020, 4 years later, this drug is working for me at 55yrs old and no cyclosporine (due to kidney disease) platelet numbers still low, but they function now, hemoglobin holding at 8
Congratulations! So glad it's working for you. The 2020 Patient webinars will be starting soon, so please watch this link to learn when they are posted: www.aamds.org/education/courses
Hi Mary contact me i will help you urgently
Hey can you live longer after taking Eltrombopag for young person with 33 years old with aplastic anemia
Bravo dott risitano lo
Zio
Hello, Tow, we hope you are feeling well today.
Across the website, aamds.org, you can find out about various treatment strategies to treat aplastic anemia and other bone marrow failure diseases. You can also use the glossary to learn more about particular medications. Get started here: www.aamds.org/diseases/aplastic-anemia, and feel free to reach out to the patient advocate at help@aamds.org.
Can we use thrombopag only for treatment
Hi Reeja - Excellent Question. Eltrombopag is currently only approved in the US to be used in combination with ATG and Cyclosporine. However, it is currently in clinical trials for first line therapy as a single treatment in the US. It is always best to consult the patients treating physician regarding treatments options.
Hi reeja reach out me i will help you urgently
Is it available here in Philippines? My 9 Yr old son Is diagnosed with AA. He's Dr. Said we don't have any choice but bmt but we cannot afford it. Dont know what to do now.
@Ginalyn Lis hi, hows your son? What treatment do you do?
Yes it is available
Hello contact me urgently i have medicine my number is mine DP pic ping me in watsup
Kumusta na po ang anak niyo?
I’m 16 and I was diagnosed with aplastic anemia
Hi PlazmaMattery, how can we help you today?
Please feel free to reach out to our patient educator at help@aamds.org.
Hi plazmamattery I will help you urgently
Hello contact me urgently i have medicine my number is mine DP pic ping me in watsup
Atg or haploidenticle bmt is best for aplastic anemia?? Plz reply sir
Hello, Swopna,
There are many factors that the specialist uses to determine the best form of treatment for each patient. You can see another specialist for a second opinion if you would like to have more guidance. Each patient's case is different.
Please send further questions to help@aamds.org, and we hope you will be feeling better soon.
ماهوعلاج بلاستك الانيميا ارجو الرد
يرجى زيارة الموقع لمزيد من المعلومات
www.aamds.org/diseases/aplastic-anemia
اني اخذت علاج كبح المناعه يسمى ATG وساندي ميل وبدا يشتقل هل يعتبر علاج نهاهي ارجوالرد
يوجد زراعة النخاع اذ كان متبرع منطبق
او ات ج عبارة عن حقن مأخوذًا من الحصان والارنب
اوًبوحد دواء اسمهً الترومبوباق ريفوليد
وشفاء من عند الله
@@salphone01 وهل اهاذا الدواء ناجح
Hello contact me urgently i have medicine my number is mine DP pic ping me in watsup
my dad has sideroblastic anemia he has it for 6 years now he take a lot of blood transition and now I think it is not working anymore and also we didn't find a Donor what should we do know...? is this treatment good for my dad..?
The standard drug therapy options for treating aplastic anemia in the US is ATG with cyclospoprine and Eltrombopag when needed. The only known possible cure is a transplant. For PNH, the US FDA approved therapies are US are Soliris or Ultromiris. There are several clinical trials available, www.clinicaltrials.gov. If you have more questions, please contact us, help@aamds.org or call 800-747-2820 x140.
I am 56 and was diagnosed w/ aplastic anemia almost a year ago. I got an intraveinous treatment for 4 days, I don't remember what that was called. I've been on Promacta, cyclosporine and acyclovir ever since. They laid some ground work for transplant but my sister was not a match. I kept taking the promacta, cyclosporine and acyclovir and after 4 or 5 months and several transfusions my counts started coming up. My labs now show mostly normal except the red blood cells have been slowly getting out of "low" range. also my hemoglobin is borderline. My doctor thinks a transplant is too dangerous now. I am hopeful I will be putting this behind me. But its nearly ruined my life.
Hi Gar - thank you for sharing your story. You have had quite a journey. If you are interested, we do host monthly virtual support groups which you may find helpful. This is an excellent opportunity to talk with other patients, www.aamds.org/support/community-events/support-groups. At our virtual July Patient and Family Conference, Dr. Patel will discuss relapsed/refractory aplastic anemia - this would be a good chance to ask her some questions about your medical concerns. Here is a link for more information on the conference and to register, aamdsif.salsalabs.org/summer2021globalpfc/index.html.
Hi Gar how are you doing please reach out me i will help you urgently
Hello contact me urgently i have medicine my number is mine DP pic ping me in watsup