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Over one year in. Starting Rituximab

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8 years 1 month ago #54587 by Terra
I haven't posted in quite a few months. Life has been...crazy, for lack of a better word.
As all of you know, ITP can certainly change life as we know it.
My 9 year old son was officially diagnosed last June, but had symptoms and signs back in March of 2015 [I just didn't put it all together until after the diagnosis].

I myself have fibromyalgia and that alone is draining.
He is also Autistic, ADHD, has Sensory Integration Disorder, anxiety, prone to boughts of depression, and has asthma.
He already has to have monthly doctor's appointments because of the ADHD and controlled substance meds [as well as his brother who is also ADHD/ODD]
And he has weekly blood draws. We do that locally in our town but his hemo is over an hour away.
It became so tough to try to work and balance all that. My husband works full time plus a part time job on weekends as a sound tech.
I ended up quitting my job and staying home because he missed quite a bit of school for appointments and then the spur of the moment ones and over night stays with treatments.
He also seemed to get sick more often once he was diagnosed with ITP and often that would send his platelets crashing fast. So we also decided to pull him and homeschool [I was a teacher so this part I got! lol]
Anyway,
His numbers basically stay around 30K then plummet. Sometimes they go up to 50K, and then by the next week they are 25-30 again.
These past few weeks have been like this:
55 one week. The next week 40. A couple of days later he had 2 nosebleeds in one day and bleeding gums. They had fallen to 29. Doctor said go back in 3 days for a redraw, they were at 19K [which is where we are now]. Quick and fast plummets.

He has had:
IVIG [had the adverse reaction to it, ended up back in the hospital]. It also did not raise his platelets above 80K.
He's had a couple of rounds of WinRho [Gives a very temporary bump to about 70K then back down in a month.
He then had a round of Predispose, barely did anything and had terrible reactions to it, even having suicidal thoughts. So NO MORE!

So now we are starting the 4 weeks of Rituximab infusions beginning next week.
I admit, I am fearful of this. I have read and read and read from medical cases/peer journals. I've read here.
I'm not keen on the side effects nor the long term effects of his immune system being even more suppressed.

For those that have been through this, did you avoid having them in public places for long because of being suppressed?

Has anyone else found that when all the other things failed at giving a longer term rise, that the Rituximab brought remission or longer/higher bumps?

I know I still have time to have them do it or not, I just feel so confused.

This journey has been something else. Because his platelets are always so low, he basically has a quality of life that isn't fun for a child.
Thursday was when they were 19K. Last night he started having a bunch of petechia, and gum bleeding. Doc said come to the ER. They were still at 19K so he said let's do the infusion Tue or Wed [they would call. They're closed Monday for Memorial Day].
What a roller coaster!

Sorry for rambling. Thank you for the support :)

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8 years 1 month ago #54588 by Rob16
Replied by Rob16 on topic Over one year in. Starting Rituximab
Wow, you are dealing with a lot of challenges at the same time. As an aside, my oldest lives with severe ADD, and as a child showed a lot of ODD as well. We found that atypical antipsychotics (e.g., risperidone) worked miracles on the ODD.

Regarding Rituxan, my wife works exclusively with AIDS patients at an infectious disease clinic. She took no special precautions after her August 2014 Rituxan treatment, but suffered no unusual illnesses.
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8 years 1 month ago #54589 by Terra
Replied by Terra on topic Over one year in. Starting Rituximab
Thank you Rob.
I think I'm more worried because he has always had a low immune system anyway since birth and is often sick [every other month].

Thanks for the heads up about the ODD meds. We actually will be starting therapy soon for my youngest so hopefully that will help!

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  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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8 years 1 month ago #54590 by Sandi
Replied by Sandi on topic Over one year in. Starting Rituximab
Terra:

Rituxan is a heavy duty treatment. I used it many years ago though and did not get sick any more than I did before I used it. It has a success rate of about 50% to 60% and remissions last an average of a year. Studies have found that a lower dose works as well as the normal dose that is usually given, so you could look into that. Less is always better.

I'm wondering why you are treating though if his counts are usually between 30 and 50. How bad are his nose bleeds when he has them? 30 is considered to be a fairly safe count. Is your son active or does he tend to hurt himself often?

There are many parents who choose not to treat and doctors are leaning toward that option more and more.

A parent here who has used watch and wait for her son for years recently wrote this:

pdsa.org/forum-sp-534/13-general-discussion-for-parents/29152-watch-and-wait-what-does-it-mean.html

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8 years 1 month ago #54593 by Terra
Replied by Terra on topic Over one year in. Starting Rituximab
Thank you for your reply :)
Yes because of his Autism and Sensory Integration, coupled with ADHD he is on the move a lot. Spinning, twirling, flapping, falls often, bumps into things, etc. He's already been twice to the ER for hitting his head. Plus he had what they thought was the beginning of a small brain bleed at one point. He was in the hospital a couple of days. Thankfully it was fine.
And yes he gets really bad nosebleeds when they bottom out. It's like a faucet. His mouth bleeds. He'll wake up covered in blood on his face.
They bottom out about every other month.

I did read her post. I have to admit, I'm not always a fan of watch and wait because of some of the unique circumstances. Though we did discuss and of course it is ultimately our decision to either go forward with infusion or stick with WinRho when they bottom out for a temporary bump.
But [again] because of his disabilities he can't do a lot. The doctor doesn't want him riding bikes or running or or anything like that [because of the motor skill issue]. He wasn't allowed to participate in PE when in public school.
It's been very tough. The one issue the doctor is worried about a bit IS the suppressed immune system because he is "sickly" since birth.
It's all NOT fun!

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8 years 1 month ago #54594 by Terra
Replied by Terra on topic Over one year in. Starting Rituximab
meant to add, that the remission statistic is also another reason we have been going back and forth on it. Knowing that of course it may not work, and then if it does it may only last a year versus the side effects, is not always appealing.
I guess I need to come to a decision rather quickly since they will be calling Tuesday or Wednesday.

Sorry to ramble!

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  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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8 years 1 month ago #54595 by Sandi
Replied by Sandi on topic Over one year in. Starting Rituximab
Some people respond really well to Rituxan and get more than a year, so there is always a chance it could last longer.

You could also consider N-Plate or Promacta. The success rates are even better with those, but monitoring would be more often.
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8 years 1 month ago #54598 by Terra
Replied by Terra on topic Over one year in. Starting Rituximab
Interesting. I'm going to do some research on NPlate right now. His hemo did mention it awhile back.

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