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Update on Danica

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14 years 5 months ago #376 by xray001
Update on Danica was created by xray001
So - we have decided that we are going to try Decadron with Danica. I am really leaning towards the Rituxan, just because I think the side effects will be less, but others seem to think the opposite, so we will try the Decadron.

She has had 25 IVIg infusions, and although it works, it only works for about 10 days, and it is getting very monotonous.

One of the main reasons for us deciding this is that fact that Danica has been getting nosebleeds. At first, it would just be a little bit of blood on the kleenex when she blew her nose, but now it has become worse - full-blown nose bleeds. I will contact her hematologist this afternoon to get the ball rolling.

I hope the side effects are not too bad for her.

I do have my reservations about how well it will work. She never responded to Prednisone at all, so I am not really sure how well she will respond to the Decadron.

Michelle - mom to Danica - age 13
Diagnosed 8-6-09
No response with Prednisone, WinRho or Rituximab.
over 60 IVIg infusions (every two weeks)
Three Decadron pulses - count was up while on the Decadron, and then fell as soon as it was stopped. SPLENECTOMY done 7-June-2011 Last count 594

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14 years 5 months ago #377 by xray001
Replied by xray001 on topic Re:Update on Danica
Oh, why does my profile NOT show up on the bottom of my posts!!!!

I find that this new site is not really an improvement over the last one.

Michelle

Michelle - mom to Danica - age 13
Diagnosed 8-6-09
No response with Prednisone, WinRho or Rituximab.
over 60 IVIg infusions (every two weeks)
Three Decadron pulses - count was up while on the Decadron, and then fell as soon as it was stopped. SPLENECTOMY done 7-June-2011 Last count 594

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14 years 5 months ago #380 by alisonp
Replied by alisonp on topic Re:Update on Danica
Hi Michelle,

Really, really hope that the new medicine works for Danica. It must get very tiresome getting all those IVIg transfusions, for you and for her.

We are clearly having a breather this week - last monday's count 16, today's count 104! Hope it lasts until he comes back from his school trip on Friday!

Ali

:)

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14 years 5 months ago #382 by ktonooka
Replied by ktonooka on topic Re:Update on Danica
Michelle,

Good luck with the Decadron with Danica, hope it works for her. It would give you another option if it does work. Is it a short pulse that you will try?

Ali,
Wow, maybe you can read the signs Dougie has (or doesn't have) better than you thought! A great start to his fun week.

Karen
mom to Jordan

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14 years 5 months ago #384 by lucidawn
Replied by lucidawn on topic Re:Update on Danica
Hope all works out for Danica. What is the difference between prednisone and decradon? I don't get it.

Donna Ingold
Mom to Kelly 22, Karen 21, Josiah 19 (Congenital Heart Defect, MS), Timothy 17 (Chronic Refractory ITP-dx 5/03, Asthma), Isaac 15(blind left eye).

Allergic and Refractive to WinRho
Shortlived small response to IVIg(a few days of 30k or less).
0-1k since September 2010
No response to...

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14 years 5 months ago #385 by tacmom
Replied by tacmom on topic Re:Update on Danica
I'm sorry to hear Danica's nosebleeds are getting worse...that was always a definite sign that Caitlin's count was around 10 or lower. We've been lucky that all she has had for the past two weeks really is bruising and some petechaie, but not enough to really make me want to take her in for a count.

Our dr has never mentioned Decadron as a treatment option for Caitlin. I hope Danica doesn't have alot of side effects from Decadron. All I've heard about this drug is that it is alot stronger than Prednisone. I don't know if that means the side effects are worse. I sure hope not!

Pauline-mom of Tiffany (age 14) and Caitlin (Chronic ITP, UCTD -age 13)

Diagnosed: 03/02/07
Current count (Feb 2011): 138
Current dose: 1 mcg/kg

Treatments tried: IVIG (doesnt work), Prednisone (sometimes works with high doses), Nplate (2 years on it-worked, but had to be taken off due to...

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14 years 5 months ago #399 by xray001
Replied by xray001 on topic Re:Update on Danica
Donna - I am not really sure what the difference is, I just know that there are about 9 or 10 different "corticosteroids".

Ali - glad to hear that Dougie has a decent count. He will have lots of fun this week, and for you, maybe you do not need to worry as much as you would if he had a low count.

Caitlin's mom (sorry, you first name has slipped my mind) How is she doing? Is she still competing?

Michelle

Michelle - mom to Danica - age 13
Diagnosed 8-6-09
No response with Prednisone, WinRho or Rituximab.
over 60 IVIg infusions (every two weeks)
Three Decadron pulses - count was up while on the Decadron, and then fell as soon as it was stopped. SPLENECTOMY done 7-June-2011 Last count 594

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14 years 5 months ago #412 by tacmom
Replied by tacmom on topic Re:Update on Danica
Caitlin is doing ok. Doesn't really "look" good so I think she is about to come down with something. Hard to tell if her count is still real low or not because she doesn't have alot of bruising or petechaie. Just the real dark circles under her eyes and she looks pale. Yes, she is competing even though she isn't supposed to. (Still no flying or dangerous tumbling though!) We head out of town this Friday for a two-day competition this weekend. We still have a couple of injuries on the team so it's hard to tell if we will pull through or not. At least this will be the last competition until April, unless the coaches add another one in between. We are going to try to get the Rituxan infusions done while she is on break from competing. She goes to see the Rheumatologist on Feb. 16th. (Her hematologist doesn't want the Rituxan to interfere with any testing that the Rheumatologist wants to do, which is why we're waiting for 2 or 3 more weeks.)

Pauline-mom of Tiffany (age 14) and Caitlin (Chronic ITP, UCTD -age 13)

Diagnosed: 03/02/07
Current count (Feb 2011): 138
Current dose: 1 mcg/kg

Treatments tried: IVIG (doesnt work), Prednisone (sometimes works with high doses), Nplate (2 years on it-worked, but had to be taken off due to...

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14 years 5 months ago #427 by xray001
Replied by xray001 on topic Re:Update on Danica
I talked to our hemo today, and he is going away for a month, so we will start the Decardron in March. I guess we will just have to do a couple more IVIg's until then.

Hopefully her nosebleeds won't get any worse. She has not had a problem the last couple of days, but that is because she had IVIg on Friday. Her count is 125 today. :)

Thanks for all your replies.

Michelle

Michelle - mom to Danica - age 13
Diagnosed 8-6-09
No response with Prednisone, WinRho or Rituximab.
over 60 IVIg infusions (every two weeks)
Three Decadron pulses - count was up while on the Decadron, and then fell as soon as it was stopped. SPLENECTOMY done 7-June-2011 Last count 594

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  • Kim
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  • Diagnosed with ITP in 1983, lupus in 1990, APS in 2001, vasculitis in 2006. Current platelet count 148. In 2007 I had a stem cell transplant for autoimmune disease and currently ITP and APS remission, with a reduction in lupus activity.
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14 years 5 months ago #435 by Kim
Replied by Kim on topic Re:Update on Danica
Good luck with the decardon...

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14 years 5 months ago #441 by barrelgal
Replied by barrelgal on topic Re:Update on Danica
It's true that Decadron and Pred can have really different responses. I had a decent response when on the prednisone (but horrible side effects) but on the Decadron I had no response at all. In fact the week I did my decadron pulse my counts dropped from 50K to 8K in just 4 days. Hopefully the reverse will be true for Danica since she didn't have a response to the prednisone.

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