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Try again?

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12 years 10 months ago #33774 by crystal lee
Try again? was created by crystal lee
My son hasn't been treated in almost 2 years, about 21 months..Not because he was doing well but because they all failed. I am wondering if anyone tried something, had it fail but try again later and have it work? I HATE prednisone, it gave him horrible side effects, but as a rescue he was taking 45mg,for 5days at only 25lbs!! I am considering asking dr if we can "TRY" again..but I am afraid I will only be putting him through heck for nothing..

He is actually in the 20's now, so might seem silly. He isn't making things easier though, he is almost 3 and a half, and he just won't stay out of danger, his little brother just turned 2 Friday, and isn't helping!! I am feeling defeated and I am starting to feel like something is bound to happen.

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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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12 years 10 months ago #33778 by Sandi
Replied by Sandi on topic Try again?
Crystal - what a tough situation. I can really empathize with you and agree that there are no perfect solutions. Have you asked your doctor?

As far as I know, it is extremely rare for someone to respond to something that they didn't respond to before. I will be the first to say that ITP can change over the years, but response to treatments hasn't been one of the things I've ever noticed. I tried it myself with Win-Rho years ago and had no response which was the same as the first time I tried it.

I can't remember what your son has tried...can you remind me?

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12 years 10 months ago #33795 by crystal lee
Replied by crystal lee on topic Try again?
Hi Sandi,
Thanks

He did Winrho, IVIG, pred and another IV (SOL??) I think steriod.

We haven't talked about treatment in about a year. Last time we did she said we could try winrho or IVIG again, or we could try rituxan, or I could even still consider 6mp (she isn't big fan of that idea herself).
Rituxan she said she would be a little pushy for it if he were bleeding, but he isn't a big bleeder, so it was something I could think about. SHe said I am the one home all day with him so if I called tomorrow and decided that was fair, but she was comfortable without treating also.

We just saw her in May, and she made the statement, hopefully we can get him to 50 by first grade :(

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12 years 10 months ago #33836 by crystal lee
Replied by crystal lee on topic Try again?
Sometimes I am so tempted to just try teh rituxan, I think well what if, what if this could actually finally be over!! I read good stories about such long remissions..but my fear over takes that everytime!!

Winrho has a black box warning, he had that twice, at the time I knew nothing about treatment, but I think I owuld be too terrified to try that now, however he had it and did perfect..(well no result, but no reaction)


Sometimes I wish I didn't know now, what I didn't know than!!

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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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12 years 10 months ago #33862 by Sandi
Replied by Sandi on topic Try again?
I know, tough situation. Since he's so young, you hate to treat him with such toxic things like Rituxan, but you're right, what if it did work and he had a nice remission? Not treating is a very reasonable way to go, but since he is so active, it's a constant worry. Too bad the little guy wouldn't just stay around 50k! How long did IVIG work for him?

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12 years 10 months ago #33867 by crystal lee
Replied by crystal lee on topic Try again?
Oh IVIG really didn't work, he had over a dozen rounds of it it would take him from 0-teens. And drop within 24-48 hours.

The very last time he had it, he had 2 rounds, VERY slow infusion, and 5 days later when we checked he was at 24..Which at that time was a miracle.

It was a confusing time, we were in our local hospital, and the peds were pushing spleen out and 2nd opinion (they even made appointment for us) BUT they felt the more IVIG he had the higher risk, his hematologist didn't really feel that way, but the peds talked her into not trying again. So after the very first response we never got to try again.

@nd opinion suggested 6mp, and they kinda put me in a situation I TRY that, or nothing

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12 years 10 months ago #33868 by crystal lee
Replied by crystal lee on topic Try again?
Just talked to his hematologist, she said we can talk about a few things, IVIG, steroids or Rituxan.
She said Rituxan will stop all antibody not just ones against platelets, children catch alot of things, and get sick alot in early years so... (than that wasn't mentioned again)

She said been a long long time since tried IVIG, so we couldn't certainly think about that

She said steroids are the oldest and if not on them forever probably the safest

So we are going to get a baseline count tomorrow than we will talk sounds like we are going to try steroids, she said probably 15-20mg for a week, than half that for a week, than start taper??

Thank you so much for your time, hopefully this will turn into the one case you do see something work that didn't before ;) BUT I have been here enough times, I know not to get hopes up.

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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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12 years 10 months ago #33873 by Sandi
Replied by Sandi on topic Try again?
Rituxan destroys B cells and T cells, which are lymphocytes (one type of white cell). I don't know what the repercussions would be giving that to a child, since he does not have all of his memory cells formed yet. That would be a tough call. I would probably not consider splenectomy at all at this point, since it is not recommended for children under 5.

Steroids might be your best bet as long as he isn't on them for a very long time with little response. Good luck with your decision, Crystal. Let me know how it goes.

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  • Kelirae24
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  • I'm 31 years old and a mom to two awesome little boys, I was diagnosed with itp when I was 17 years old. With no treatment my counts are 0-5 I am currently on nplate and I had a splenectomy in 2004
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12 years 10 months ago #33882 by Kelirae24
Replied by Kelirae24 on topic Try again?
Hi yes Ivig did not work for me for about six years they tried it every now and then and then two years ago they tried it again and it works only for about a week but its good to have an emergency drug

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12 years 10 months ago #33904 by crystal lee
Replied by crystal lee on topic Try again?
Thanks guys, so much!!

Sandi, I agree with the spleen!! I won't even consider that yet

Keli, that is good news (kinda)

I thought of something I should of asked Dr about but honestly didn't think about it at the time, if you treat and do respond, when you drop again do you drop further than where you started? The only time we treated he was 0 so he couldn't drop further, I have nothing to compare it too. I felt ready to give this a try, but now that this thought popped in my head, OH no!! Took us almost 2 years to get here, will this screw it all up?

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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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12 years 10 months ago #33931 by Sandi
Replied by Sandi on topic Try again?
No, people don't always drop lower than they were, but sometimes they do. You never know what will happen with ITP.

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12 years 10 months ago #33955 by crystal lee
Replied by crystal lee on topic Try again?
Well he is at 13k..Been long time since this low. We are going to try pred for 2 weeks, recheck in 3, if nothing going to try IVIG.

His Hematologist said all that about antibodies with the Rituxan, when I talked to ped today she said yeah, but not forever..Sounds like she leaning a little toward trying it??

ITP is so frustrating!!! :(

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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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12 years 10 months ago #33956 by Sandi
Replied by Sandi on topic Try again?
No, it's not forever. It usually lasts about a year. It will knock out adult memory cells, but not baby ones, so new ones are always being formed.

Good luck, Crystal. Let me know how it all goes!

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12 years 10 months ago #34166 by ashybobashy
Replied by ashybobashy on topic Try again?
I hope everything goes well. It's hard to know what is the best treatment. When I had Ivig the first time I had remission for six years but the second time I got it it went down within three weeks and I'd the worst headache of my life. It's so hard to know what treatment will be the best. But there will be something that will work. It just can be frustrating at times.
The following user(s) said Thank You: crystal lee

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12 years 10 months ago #34188 by crystal lee
Replied by crystal lee on topic Try again?
Thanks, WOW 6 years after IVIG, that is just amazing. I know IVIG is usually a temp fix, I think when this first started their hope was it would get him up until his body corrected itself. I just want him "safe" It is so hard. Dr's get a little nervous when he is real low but since the 1st line treatments don't work, they aren't even sure which riskier, the treatments or his activity level and age.. :( They give me the facts than leave it all up to me :angry:

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12 years 9 months ago #34515 by crystal lee
Replied by crystal lee on topic Try again?
His count was 6 :( We did not stay for IVIG..I am not sure why, they said we don't need to do anything yet, or we can try. They ordered more blood, one was ANA which isn't back. The other she said tested inflammation? She thought his body would be all reved up but she was surprised it came back totally normal? Does this make sense? The ANA makes me nervous, not sure why suddenly looking at this...I am going to guess just routine since it has been 2 years and no improvement. I just get all nervous knowing a test out and need to wait for results.

Feeling ready to jump off this ride!!

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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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12 years 9 months ago - 12 years 9 months ago #34517 by Sandi
Replied by Sandi on topic Try again?
Try not to worry. Those are standard tests. Was the other one a SED rate? That one measures inflammation. SO does the ANA, sort of.

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12 years 9 months ago #34518 by crystal lee
Replied by crystal lee on topic Try again?
I saw one test started with a M I thought it was metabolic it was something met..but when I looked up metabolic it didn't seem to mention inflammation? I am unsure, we were there for 5 hours and ended up walking out without papers. (something we never do, but my 2yr old had a wellcheck also, so we had a 2 and 3 year old in Dr office for 5 hours, our brains weren't functioning)

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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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12 years 9 months ago #34533 by Sandi
Replied by Sandi on topic Try again?
A metabolic panel is ordered often...I have one every three months. It doesn't really measure inflammation though, mostly minerals (potassium, calcium, etc) and liver and kidney function.

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12 years 9 months ago #34536 by crystal lee
Replied by crystal lee on topic Try again?
Thanks, I am not positive, I swore it was what paper said, but she said inflammation so it didn't make sense? Happy it is all normal though :)

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12 years 9 months ago #34942 by crystal lee
Replied by crystal lee on topic Try again?
Dr called with results this morning, he is at 65!!?? This child is so confusing, in 2 years he has only gone above 20 once...After pred he was down to 6, these 2 weeks we did nothing and he is up to 65

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  • CindyAnn
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  • Diagnosed Jan 10, 2008. Rituxan treatment in May 2009. Treated with Prednisone off and on until 08/23/17 - 12.5mg Promacta as of 10/22/17
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12 years 9 months ago #34943 by CindyAnn
Replied by CindyAnn on topic Try again?
Great :cheer:

It is good to hear counts going the right direction!!!

Cindy Ann
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12 years 8 months ago #35381 by crystal lee
Replied by crystal lee on topic Try again?
And he is back to 12!! :( Why..WHY!!?? I am so tired of always being so worried about him! He needs to catch a break..He has gone up to nice numbers twice, but both times fell way down, and quick.. Just sad, and still have no idea what to do!!

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The Platelet Disorder Support Association does not provide medical advice or endorse any medication, vitamins or herbs. The information contained herein is not intended nor implied to be a substitute for professional medical advice and is provided for educational purposes only. Always seek the advice of your physician or other qualified healthcare provider before starting any new treatment, discontinuing an existing treatment and to discuss any questions you may have regarding your unique medical condition.