I will say that the Doptelet is CRAZY expensive and a side effect is fatigue, which isn't ideal for a college student.
Best of luck to you!!! ITP is so horrible and there seems to be very little knowledge, studies, or evidence of effective treatments that work for everyone....kind of a case by case basis and hope to luck out.
I was treated fir my ITP with prednisone for about 5 months, but my platelets were up and down for the entire time. We didn’t want to continue steroids indefinitely , so I got a prescription for Promacta from Novartis but it didn’t seem to do much at the time. I was given Rituximab infusions for 2 weeks until I suffered a reaction and was hospitalized. Then I was given 2 rounds of IVIG while in the hospital and that seemed to stabilize my platelets. I am still on the Promacta and it seems to be holding my platelet counts around the 200+ mark. I am just holding my breath because my prescription for Promacta expires at the end of the year, so I have to see if they will extend my prescription gratis, because it is EXTREMELY expensive! All of this occurred within a nine month span this year. Im hoping you can get relief soon!!
I was treated fir my ITP with prednisone for about 5 months, but my platelets were up and down for the entire time. We didn’t want to continue steroids indefinitely , so I got a prescription for Promacta from Novartis but it didn’t seem to do much at the time. I was given Rituximab infusions for 2 weeks until I suffered a reaction and was hospitalized. Then I was given 2 rounds of IVIG while in the hospital and that seemed to stabilize my platelets. I am still on the Promacta and it seems to be holding my platelet counts around the 200+ mark. I am just holding my breath because my prescription for Promacta expires at the end of the year, so I have to see if they will extend my prescription gratis, because it is EXTREMELY expensive! All of this occurred within a nine month span this year. Im hoping you can get relief soon!!
@all members discussing drugs:
This is Mayo Clinic’s information https://www.mayoclinic.org/drugs-supplements/eltrombopag-oral-route/description/drg-20072443
Try to remember that all of the side effects won’t exist for you. The drug companies have to include everything, even a bad cold. Some side effects never affect you, and others are so mild that you never notice them. Do you think these drugs would work for you?
I’ve had rituxan infusions four times and did just fine with them. Rituxan is a great drug for many autoimmune conditions, including ITP, especially when the lesser drugs like prednisone aren’t working well or are causing significant side effects. You can have one episode of ITP and never have it again. it’s important to try to find the cause of the ITP if possible. Sometimes it just happens but other times it’s caused by a drug such as ibuprofen, Advil, or even Tylenol. I would feel very comfortable with the treatment and not be worried that this is going to be chronic as you may have this one episode and never have it again. I hope that is the case and please let us know how you do after the infusion.
I’ve had rituxan infusions four times and did just fine with them. Rituxan is a great drug for many autoimmune conditions, including ITP, especially when the lesser drugs like prednisone aren’t working well or are causing significant side effects. You can have one episode of ITP and never have it again. it’s important to try to find the cause of the ITP if possible. Sometimes it just happens but other times it’s caused by a drug such as ibuprofen, Advil, or even Tylenol. I would feel very comfortable with the treatment and not be worried that this is going to be chronic as you may have this one episode and never have it again. I hope that is the case and please let us know how you do after the infusion.
I had the infusion once did nothing, HAD stop the IVIG for 2 weeks. My SMALL. FIBER NEUROPOTHY is so much worse! Legs are so cold and burning! Neurologist started me on Gabapentin low does, no releaf!! I need a higher dose, will ask my dr., I'm so disgusted. Stuck in jail! Can't go out!
I’ve had rituxan infusions four times and did just fine with them. Rituxan is a great drug for many autoimmune conditions, including ITP, especially when the lesser drugs like prednisone aren’t working well or are causing significant side effects. You can have one episode of ITP and never have it again. it’s important to try to find the cause of the ITP if possible. Sometimes it just happens but other times it’s caused by a drug such as ibuprofen, Advil, or even Tylenol. I would feel very comfortable with the treatment and not be worried that this is going to be chronic as you may have this one episode and never have it again. I hope that is the case and please let us know how you do after the infusion.
It has been 8 months since I was diagnosed with ITP. Had 2 IVIG transfusion… iron infusion, 4 chemo treatments and 60 mg of prednisone… I am down to 7 mg prednisone now. Going down by 1 mg every month… platelets are up to 150 or so… up and down all the time. one of the side effects of my flue shot I got in October 2023..was ITP…therefore no more flue shots… no Tylenol products, no NSAIDS… still suffering from osteo arthritis with nothing available for pain relief.
I had the infusion once did nothing, HAD stop the IVIG for 2 weeks. My SMALL. FIBER NEUROPOTHY is so much worse! Legs are so cold and burning! Neurologist started me on Gabapentin low does, no releaf!! I need a higher dose, will ask my dr., I'm so disgusted. Stuck in jail! Can't go out!
@penn
I sure know what it’s like being stuck at home! Not fun. Along with my autoimmune disease, i fell and “broke my neck.” I’ve been in a cervicular collar since Sept. With no driving
I’ve posted a link to the blood disorders where there are lots of people with ITP. https://connect.mayoclinic.org/group/blood-.-cancers-disorders/. Lots to learn from them.
You stated that it feels like you're in prison. Can you not leave the house?
Becky!! OH NO!!!!
How long do you need to keep the collar on? Hope you will be up and going soon!!!
I'm sick and tired of pain every moment every day of my life. It's very hard to sit especially in a car. That is due to failed Laminectomy and fusion. MRI can't see L-4. L-5 because of the fusion!!! No one knows why sitting is so painful??
Autoimmune Diseases!!!!!!!!!!!!!!!!!!!!!!!!!!! Where did I get it from? Chemo 1995 Breast Cancer?
Can't win. I couldn't go out today [PAIN!] and I'm feeling so depressed.
Hope your having a better days SOON!!!
@penn
I sure know what it’s like being stuck at home! Not fun. Along with my autoimmune disease, i fell and “broke my neck.” I’ve been in a cervicular collar since Sept. With no driving
I’ve posted a link to the blood disorders where there are lots of people with ITP. https://connect.mayoclinic.org/group/blood-.-cancers-disorders/. Lots to learn from them.
You stated that it feels like you're in prison. Can you not leave the house?
I’m so sorry to hear about your fall! I know what it’s like to try fighting one thing and get another….i fell too and tore my rotator cuff and needed surgery!! Maybe we are trying too hard to stay safe. Hugs for your recovery.
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I will say that the Doptelet is CRAZY expensive and a side effect is fatigue, which isn't ideal for a college student.
Best of luck to you!!! ITP is so horrible and there seems to be very little knowledge, studies, or evidence of effective treatments that work for everyone....kind of a case by case basis and hope to luck out.
-
Like -
Helpful -
Hug
1 ReactionI was treated fir my ITP with prednisone for about 5 months, but my platelets were up and down for the entire time. We didn’t want to continue steroids indefinitely , so I got a prescription for Promacta from Novartis but it didn’t seem to do much at the time. I was given Rituximab infusions for 2 weeks until I suffered a reaction and was hospitalized. Then I was given 2 rounds of IVIG while in the hospital and that seemed to stabilize my platelets. I am still on the Promacta and it seems to be holding my platelet counts around the 200+ mark. I am just holding my breath because my prescription for Promacta expires at the end of the year, so I have to see if they will extend my prescription gratis, because it is EXTREMELY expensive! All of this occurred within a nine month span this year. Im hoping you can get relief soon!!
-
Like -
Helpful -
Hug
2 Reactions@all members discussing drugs:
This is Mayo Clinic’s information
https://www.mayoclinic.org/drugs-supplements/eltrombopag-oral-route/description/drg-20072443
Try to remember that all of the side effects won’t exist for you. The drug companies have to include everything, even a bad cold. Some side effects never affect you, and others are so mild that you never notice them. Do you think these drugs would work for you?
-
Like -
Helpful -
Hug
1 ReactionI’ve had rituxan infusions four times and did just fine with them. Rituxan is a great drug for many autoimmune conditions, including ITP, especially when the lesser drugs like prednisone aren’t working well or are causing significant side effects. You can have one episode of ITP and never have it again. it’s important to try to find the cause of the ITP if possible. Sometimes it just happens but other times it’s caused by a drug such as ibuprofen, Advil, or even Tylenol. I would feel very comfortable with the treatment and not be worried that this is going to be chronic as you may have this one episode and never have it again. I hope that is the case and please let us know how you do after the infusion.
-
Like -
Helpful -
Hug
1 ReactionI had the infusion once did nothing, HAD stop the IVIG for 2 weeks. My SMALL. FIBER NEUROPOTHY is so much worse! Legs are so cold and burning! Neurologist started me on Gabapentin low does, no releaf!! I need a higher dose, will ask my dr., I'm so disgusted. Stuck in jail! Can't go out!
-
Like -
Helpful -
Hug
1 ReactionIt has been 8 months since I was diagnosed with ITP. Had 2 IVIG transfusion… iron infusion, 4 chemo treatments and 60 mg of prednisone… I am down to 7 mg prednisone now. Going down by 1 mg every month… platelets are up to 150 or so… up and down all the time. one of the side effects of my flue shot I got in October 2023..was ITP…therefore no more flue shots… no Tylenol products, no NSAIDS… still suffering from osteo arthritis with nothing available for pain relief.
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Helpful -
Hug
1 ReactionCurious why you think it was the flu shot.
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1 Reaction@penn
I sure know what it’s like being stuck at home! Not fun. Along with my autoimmune disease, i fell and “broke my neck.” I’ve been in a cervicular collar since Sept. With no driving
I’ve posted a link to the blood disorders where there are lots of people with ITP.
https://connect.mayoclinic.org/group/blood-.-cancers-disorders/. Lots to learn from them.
You stated that it feels like you're in prison. Can you not leave the house?
-
Like -
Helpful -
Hug
1 ReactionBecky!! OH NO!!!!
How long do you need to keep the collar on? Hope you will be up and going soon!!!
I'm sick and tired of pain every moment every day of my life. It's very hard to sit especially in a car. That is due to failed Laminectomy and fusion. MRI can't see L-4. L-5 because of the fusion!!! No one knows why sitting is so painful??
Autoimmune Diseases!!!!!!!!!!!!!!!!!!!!!!!!!!! Where did I get it from? Chemo 1995 Breast Cancer?
Can't win. I couldn't go out today [PAIN!] and I'm feeling so depressed.
Hope your having a better days SOON!!!
-
Like -
Helpful -
Hug
1 ReactionI’m so sorry to hear about your fall! I know what it’s like to try fighting one thing and get another….i fell too and tore my rotator cuff and needed surgery!! Maybe we are trying too hard to stay safe. Hugs for your recovery.
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Helpful -
Hug
1 Reaction