Rituxan for ITP

Posted by sonny001 @sonny001, Jun 20 4:53pm

I have to have infusion of Rituxan for ITP. I’m worried about not getting better. Anyone else have this?

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@sonny001

Wow, thanks for asking. I felt okay yesterday. Today I felt very fatigued and have had a slight headache. I can’t imagine that anything good is happening yet since I have three more to go. I truly appreciate you asking. I don’t have anyone to talk to about this. I do wish I could get out of my funk and just accept this is what it’s going to be. Again, thank you!!

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@sonny001 Were you told to take Tylenol before or after the infusion? It helps with the “flu-like” symptoms

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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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@becsbuddy

@sonny001 Were you told to take Tylenol before or after the infusion? It helps with the “flu-like” symptoms

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Yes, thank you!!

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@ginger3344

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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Good luck!

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@becsbuddy

@ginger3344 Please, let’s not start discussing Covid again! We’re all here to help those getting rituxan!
Thank you, Becky

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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 !!!

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@ginger3344

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 !!!

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@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

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@becsbuddy

@sonny001 Were you told to take Tylenol before or after the infusion? It helps with the “flu-like” symptoms

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Well, my platelets haven’t budged after first infusion. Very depressing.

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@becsbuddy

@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

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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!!

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