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SHOULD I GIVE TO RITUXIMAB A TRY?

  • GrouchoMarx
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  • I would never recommend an illness that choses people like me.
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5 years 4 months ago #69774 by GrouchoMarx
SHOULD I GIVE TO RITUXIMAB A TRY? was created by GrouchoMarx
Dear all,
My overall satisfaction with Promacta is ok but there are downs. Today I have an unexpected 22K. It could be due to a urinal infection. However my doctor proposed to me Rituximab with the argument that there is a 50% chance of permanent remission.
Normally Promacta has keeping me above 40K steady but I had 2 temporary drops.
Should I put Rituximab in the agenda and move forward?
Txs

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  • mrsb04
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  • ITP since 2014. Retired nurse. My belief is empower patients to be involved as much as possible in their care. Read, read, read & ALWAYS question medics about the evidence base they use.
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5 years 4 months ago - 5 years 4 months ago #69775 by mrsb04
Replied by mrsb04 on topic SHOULD I GIVE TO RITUXIMAB A TRY?
During the Covid 19 pandemic I would be very wary indeed of undergoing Mab therapy. Personally I don't think a 50% chance is good enough to try it at the moment.
If you need 'flu & pneumonia vacs they should be at least 4 weeks before you can start Rituximab. Your count may well come back up during that period. Also if you do have the vaccines there is no guarantee that Rituximab will not neutralise them or any others you have had in the past.

UK ITP Association doctors published their own covid guidelines stating "Rituximab is responsible for long-lasting B-cell depletion and potentially severe infectious events and the impact of the drug on infection risk of COVID-19 is not clear. Furthermore it can decrease formation of de novo antibodies. Until further information becomes available, it may be prudent to avoid immunosuppressant agents and rituximab in new or relapsed patients during the COVID-19 pandemic if possible."

One of the joys of ITP is counts can be unstable especially with a virus or infection. Each person is different. Viruses wipe my count but not bacterial infections.
If it were me I would stick on my current meds and see what happens, maybe you could up the dose to 100mg for a couple of weeks.

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5 years 4 months ago #69776 by CindyL
Replied by CindyL on topic SHOULD I GIVE TO RITUXIMAB A TRY?
Groucho, don't forget we are all different.
I did Rituxan in 2011 and have been in remission since. No other health issues since; I don't get sick any more often than before; I'm not on antibiotics,(unless needed).
Meanwhile, there are others who it doesn't work for.
It's totally up to you.
Good luck.

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  • GrouchoMarx
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  • I would never recommend an illness that choses people like me.
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5 years 4 months ago #69777 by GrouchoMarx
Replied by GrouchoMarx on topic SHOULD I GIVE TO RITUXIMAB A TRY?
Well noted! Thank you for your, as usual, useful advice.

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  • GrouchoMarx
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  • I would never recommend an illness that choses people like me.
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5 years 4 months ago #69778 by GrouchoMarx
Replied by GrouchoMarx on topic SHOULD I GIVE TO RITUXIMAB A TRY?
Good point Cindy.

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  • GrouchoMarx
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5 years 4 months ago - 5 years 4 months ago #69779 by GrouchoMarx
Replied by GrouchoMarx on topic SHOULD I GIVE TO RITUXIMAB A TRY?
If I understood well the reason for a drop on platelets due to an infection, the fact that the infection is caused by a virus or by a bactery should not make any difference. The drop is caused by the overreaction of the body (including the b cells) against an enemy. The overreaction affects collaterally the platelets.

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5 years 4 months ago #69782 by MelA
Replied by MelA on topic SHOULD I GIVE TO RITUXIMAB A TRY?
Is the body over-reacting "against an enemy" when if it is going after a viral or bacterial infection OR is it doing what it is supposed to do by trying to kill off "an enemy"? When the body kills off the antibody covered platelets it is doing its job getting rid of something it detected that isn't right.

Only you can make that decision about rituxan Grouch, only you - we can't tell you what to do.
Good luck - know you will do what is right for you.

"Instead of wasting your time worrying about symptoms, just get it checked out" -Nieca Goldberg, MD

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  • Chad89
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  • Diagnosed with ITP in 2007 at age 18.
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5 years 3 months ago #69943 by Chad89
Replied by Chad89 on topic SHOULD I GIVE TO RITUXIMAB A TRY?
In remission since 2011? That’s awesome! I am scheduled for my first Rituxan on Friday and I’m hoping it works. Any advice?

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  • GrouchoMarx
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  • I would never recommend an illness that choses people like me.
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5 years 3 months ago #69952 by GrouchoMarx
Replied by GrouchoMarx on topic SHOULD I GIVE TO RITUXIMAB A TRY?
I will use the line when i exhaust completely the TPO try , promacta first and Nplate after plus a it of diet. I feel great, no bleeding dont want to go for it yet. According to my doctor 50% chance of remission. Good luck an let us know please.

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  • Chad89
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  • Diagnosed with ITP in 2007 at age 18.
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5 years 3 months ago #69953 by Chad89
Replied by Chad89 on topic SHOULD I GIVE TO RITUXIMAB A TRY?
I’ll definitely update if it works or not. Seems to be more stubborn this time. My first recurrence in 13 years.

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5 years 3 months ago #69954 by CindyL
Replied by CindyL on topic SHOULD I GIVE TO RITUXIMAB A TRY?
Chad, if you mean me, I don't really have any advice. All my treatments went well with no issues. I took a book and a puzzle book and I think I had water with me.
Good luck. I hope it works for you.
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5 years 3 months ago #69957 by gozorakgogo
Replied by gozorakgogo on topic SHOULD I GIVE TO RITUXIMAB A TRY?
The Cancer Center that I received my 4 retux treatments has a Patient Entertainment Specialist. The guy hooks patients receiving infusions with Ipad, music streaming, they also have cordless VR headsets(although I never saw anyone use). I never availed myself of those services since I slept through the treatments because benydril tends to do that to me. Pretty cool dude however. We talked music and such all the time.
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  • Chad89
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  • Diagnosed with ITP in 2007 at age 18.
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5 years 3 months ago #69965 by Chad89
Replied by Chad89 on topic SHOULD I GIVE TO RITUXIMAB A TRY?
Did it work for you Gozo? How long ago did you have the Rituxan?

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5 years 3 months ago - 5 years 3 months ago #69974 by gozorakgogo
Replied by gozorakgogo on topic SHOULD I GIVE TO RITUXIMAB A TRY?
I received my first Ritux infusion in like the 3rd week of July during my second hospitalization. I finished the 4 weekly infusions in August. I also began weekly Nplate injections the day of that first ritux infusion in July which continue to this day

In the link below I broke down and detailed all of my treatments that I have received since my diagnosis this past July and impacts on my platelet levels in this post to share. It would seem tht Ritux and Nplate have worked because since I began my average platelet levels have jumped from averaging under 20 to averaging well within the normal range.

pdsa.org/discussion-group/7-treatment-general/30705-this-might-be-of-interest-to-those-who-like-to-crunch-platelet-numbers.html
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  • Chad89
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  • Diagnosed with ITP in 2007 at age 18.
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5 years 3 months ago #69982 by Chad89
Replied by Chad89 on topic SHOULD I GIVE TO RITUXIMAB A TRY?
That’s great!! I really appreciate it. I hope it keeps working for you. Hopefully I get some positive results.

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