Oh hell is right! I started falling down a few days after the first Vaccine. I knew it was the vaccine, right away. Then I went to a top notch Neurosurgeon because my left leg was almost paralyzed , he said he thought he could fix me..27k because he did not take medicare. S1,L5,L4,and L3 got fused at Cedar Sinai in LA . An 8 inch cut on my front side and about 10 inches on the back side, now no better but more pain 2 years later. Six months and then 18 months I filed a report to the CDC to no avail. Never a word from them, it would be interesting to see how many others filed a report. We could have been treated back then. I know more people that had problems then ones that got covid.
The only way I got help was from a friend at our yacht club got completely paralyzed and put on a ventalator. After 2 weeks he got an IVIG and went home a week later and had a good recovery. So I went to his Doctor and went on the IVIG four hour infusion every two weeks for a year. The last one 6 months ago gave me a mini stroke and I lost 25% vision in my right eye. I did get to where I was walking with a cane instead of a walker, had to stop the IVIG . I now have over the last six months been given the Rituxan, and it is helping. Next week they are going to start me back on the IVIG again and the Rituxan every 3 months. This is going to be interesting. The hardware in my back sets off the alarm at the airport, but at least I am back to walking with a cane.
Why weren't they honest with us and researched those that had issues. Big Pharma? WELL WISH ME LUCK and send Prayers my way,😅 I'll need both,,,and keep you posted.
Oh hell is right! I started falling down a few days after the first Vaccine. I knew it was the vaccine, right away. Then I went to a top notch Neurosurgeon because my left leg was almost paralyzed , he said he thought he could fix me..27k because he did not take medicare. S1,L5,L4,and L3 got fused at Cedar Sinai in LA . An 8 inch cut on my front side and about 10 inches on the back side, now no better but more pain 2 years later. Six months and then 18 months I filed a report to the CDC to no avail. Never a word from them, it would be interesting to see how many others filed a report. We could have been treated back then. I know more people that had problems then ones that got covid.
The only way I got help was from a friend at our yacht club got completely paralyzed and put on a ventalator. After 2 weeks he got an IVIG and went home a week later and had a good recovery. So I went to his Doctor and went on the IVIG four hour infusion every two weeks for a year. The last one 6 months ago gave me a mini stroke and I lost 25% vision in my right eye. I did get to where I was walking with a cane instead of a walker, had to stop the IVIG . I now have over the last six months been given the Rituxan, and it is helping. Next week they are going to start me back on the IVIG again and the Rituxan every 3 months. This is going to be interesting. The hardware in my back sets off the alarm at the airport, but at least I am back to walking with a cane.
Why weren't they honest with us and researched those that had issues. Big Pharma? WELL WISH ME LUCK and send Prayers my way,😅 I'll need both,,,and keep you posted.
By the way the Staff and Doctors have been The Best and new what Was going on with me and got headed in the Right direction....they were very Professional !!!
By the way the Staff and Doctors have been The Best and new what Was going on with me and got headed in the Right direction....they were very Professional !!!
@ginger3344 That’s great!! What type of doctors were these? And what type of hospital did you find them in? Course, as I just typed that statement it sounded like finding martians not doctors! So to fix my error, I’ll ask where do these doctors practice?
Can you tell ‘how’ they were different
@ginger3344 That’s great!! What type of doctors were these? And what type of hospital did you find them in? Course, as I just typed that statement it sounded like finding martians not doctors! So to fix my error, I’ll ask where do these doctors practice?
Can you tell ‘how’ they were different
Answers to the above:
Doctors at ucla, They have big outpatient research clinics, so they are not nervous to say what they really think,neuromuscular doctor and ophthalmologist. My other docs are in Santa Barbara CA. They sent me back to my regular doctors with their imput. Both the IVIG and Rituxan have worked,, this week will be the first time of going back on IVIG after four times of having the Rituxan. Thanks for having me clarify that!!
Hi, how long have you had ITP? Have you ever taken Rituxan? If so, did it help you at all? I had my first infusion today. I’m glad you have found something to work for you, I’m going to look up that drug.
My daughter (18) also has ITP and platelets are currently 15. She has tried steroids, 2 rounds of IVIG and her plts rose from 5 to 103 but then crashed again within a week back down to 12. She has also tried 2 rounds of Rituxan and started Doptelet orally at the same time, but nothing is working. I am beside myself with worry for her as her mom.
She had ITP when she was 4 following a live nasal mist flu shot, and this time we think the ITP was reactivated by mono. She also had strep and pneumonia at the same time. She has been hospitalized twice for nose bleeds in the past month, once for 6 days and once for 4 days. She is a freshman at University of Arizona so this is just devastating for her 🙁
Her doctor told her this week he doesn't know what else he can do for her. We don't want to resort to removing the spleen. We have an appointment at Mayo Phoenix scheduled for 11/26, but I don't know if we can keep her nosebleeds under control until then without being hospitalized again.
Can anyone offer any insight or suggestions? I just read about eltrombopag and romiplostim today. Anyone think these treatments could work faster, safer, better than Rituxan which is leaving her absolutely exhausted and with severe migraines?
Rituxan did not work for me. iVIG did for about three months. We are going to try an oral treatment but I’m not sure what it’s called yet. Thank you for your kind thoughts.
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Oh hell is right! I started falling down a few days after the first Vaccine. I knew it was the vaccine, right away. Then I went to a top notch Neurosurgeon because my left leg was almost paralyzed , he said he thought he could fix me..27k because he did not take medicare. S1,L5,L4,and L3 got fused at Cedar Sinai in LA . An 8 inch cut on my front side and about 10 inches on the back side, now no better but more pain 2 years later. Six months and then 18 months I filed a report to the CDC to no avail. Never a word from them, it would be interesting to see how many others filed a report. We could have been treated back then. I know more people that had problems then ones that got covid.
The only way I got help was from a friend at our yacht club got completely paralyzed and put on a ventalator. After 2 weeks he got an IVIG and went home a week later and had a good recovery. So I went to his Doctor and went on the IVIG four hour infusion every two weeks for a year. The last one 6 months ago gave me a mini stroke and I lost 25% vision in my right eye. I did get to where I was walking with a cane instead of a walker, had to stop the IVIG . I now have over the last six months been given the Rituxan, and it is helping. Next week they are going to start me back on the IVIG again and the Rituxan every 3 months. This is going to be interesting. The hardware in my back sets off the alarm at the airport, but at least I am back to walking with a cane.
Why weren't they honest with us and researched those that had issues. Big Pharma? WELL WISH ME LUCK and send Prayers my way,😅 I'll need both,,,and keep you posted.
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6 ReactionsYes, thank you!!
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2 ReactionsGood luck!
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2 ReactionsBy the way the Staff and Doctors have been The Best and new what Was going on with me and got headed in the Right direction....they were very Professional !!!
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2 Reactions@ginger3344 That’s great!! What type of doctors were these? And what type of hospital did you find them in? Course, as I just typed that statement it sounded like finding martians not doctors! So to fix my error, I’ll ask where do these doctors practice?
Can you tell ‘how’ they were different
Well, my platelets haven’t budged after first infusion. Very depressing.
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1 ReactionAnswers to the above:
Doctors at ucla, They have big outpatient research clinics, so they are not nervous to say what they really think,neuromuscular doctor and ophthalmologist. My other docs are in Santa Barbara CA. They sent me back to my regular doctors with their imput. Both the IVIG and Rituxan have worked,, this week will be the first time of going back on IVIG after four times of having the Rituxan. Thanks for having me clarify that!!
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Helpful -
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4 ReactionsMy daughter (18) also has ITP and platelets are currently 15. She has tried steroids, 2 rounds of IVIG and her plts rose from 5 to 103 but then crashed again within a week back down to 12. She has also tried 2 rounds of Rituxan and started Doptelet orally at the same time, but nothing is working. I am beside myself with worry for her as her mom.
She had ITP when she was 4 following a live nasal mist flu shot, and this time we think the ITP was reactivated by mono. She also had strep and pneumonia at the same time. She has been hospitalized twice for nose bleeds in the past month, once for 6 days and once for 4 days. She is a freshman at University of Arizona so this is just devastating for her 🙁
Her doctor told her this week he doesn't know what else he can do for her. We don't want to resort to removing the spleen. We have an appointment at Mayo Phoenix scheduled for 11/26, but I don't know if we can keep her nosebleeds under control until then without being hospitalized again.
Can anyone offer any insight or suggestions? I just read about eltrombopag and romiplostim today. Anyone think these treatments could work faster, safer, better than Rituxan which is leaving her absolutely exhausted and with severe migraines?
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1 ReactionMy daughter's platelets haven't budged after 2 rounds. Can I ask if the Rituxan ever helped you and how long it took? Praying you're feeling better!
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1 ReactionRituxan did not work for me. iVIG did for about three months. We are going to try an oral treatment but I’m not sure what it’s called yet. Thank you for your kind thoughts.
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