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New symptom? and possible treatments? 11 years 11 months ago #776

  • momspot
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Hi all. My 18 year old daughter was diagnosed with ITP in February of last year. She had petechiae on her legs and arms and her count was 14,000. She was also severely anemic. She's been taking Iron 325 mg twice a day ever since and her hemoglobin stays at a healthy 12 unless she skips even a few doses. Her ITP was treated with Prednisone most of the last year. She was finally able to taper off in December. Her counts are steadily falling though. Her count two weeks ago was 130. Her hematologist wanted another blood test in two weeks (tomorrow) and an appointment in four. He keeps talking about taking out her spleen if her counts keep falling. But he hasn't really mentioned any other treatments! I know there are other treatments to try. Taking out her spleen at this age seems drastic and it's my understanding that it doesn't always work.

Our pediatrician, whom she still sees, confidentially suggested we get a second opinion. She said with the children she sees who get sent to a Children's Hospital they often don't even treat unless the platelets get very low. I know that she's eighteen so maybe adult onset and pediatric onset are treated differently?

Any suggestions?

Also, of course she bruises easily due to the anemia and generally is sporting several bruises. But she told me she had a dent the other day. It appears that she had a bruise on her right buttock about the size of a fingertip. The bruise has faded to a faint blueish color, but there's a small indentation (also the size of a fingertip) still there. It seems like somehow the tissue was damaged? Has anyone else had anything like this happen?

Thanks for any replies!

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Re: New symptom? and possible treatments? 11 years 11 months ago #778

  • 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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I agree with the pediatrician.

Has your daughter ever had a shot in that area? Some meds, such as Kenalog (allery med) can cause permanent dimpling in the skin. Other than that, never heard of it in relation to ITP.

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Re: New symptom? and possible treatments? 11 years 11 months ago #780

  • momspot
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No. She hasn't had any shots in that area. She did have a hip injury in that area four years ago, but the dimple is new. I guess I will call the pediatrician tomorrow and see what she thinks. Thanks so much for your reply.

Momspot

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Re: New symptom? and possible treatments? 11 years 11 months ago #797

  • CindyL
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I think a second opinion is in order too. I was diagnosed in /04 and had my spleen out in /06. And I am still at the point I was before I had it out.

Other than bruising, does your daughter have any symptoms? If not, I would suggest waiting on the splenectomy. Let us know what her count is today. 130 isn't bad. I wish my numbers were that high! Good luck and keep us posted.

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Re: New symptom? and possible treatments? 11 years 11 months ago #814

  • momspot
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Thank you Cindy! Her platelets were 132 today so they are not dropping the way they were. Other than the bruising, she has fatigue. I know when her platelets get below 90 she usually gets petechiae and very fatigued. She also gets really cranky.

I talked to the pediatrician today and she is getting us some names and numbers for a second opinion. She is stumped about the butt dent but says as long as it's not bothering her or getting bigger she doubts it's anything to worry about.

Thanks so much for your reply!

Momspot

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Re: New symptom? and possible treatments? 11 years 11 months ago #829

  • CindyL
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That's a good count, Mom! I go this Sunday(I think) for a count and am hoping I haven't dropped much. Last month I was at 54.

Please keep us posted on how your daughter is doing.

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Re: New symptom? and possible treatments? 11 years 10 months ago #1655

  • weirdjack
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Everyone is different, but I've never had a count above 90.
I had good results for several years with Cellcept, then a couple more years with Cyclosporine....counts in the mid-30's...which is quite good for me. And Cyclosporine in generic form is very inexpensive. I just changed to 75mg/day of Promacta (not inexpensive at $6k monthly), after Cyclosporine stopped working last December.
Get a second opinion. There are many ways to treat ITP and an incalculable number of opinions on what is a "low count".
My count had dropped to 4k in January, after a few weeks it went up into the low teens, last week I finally made it up to 32k.
Personally, I'm ecstatic to get above 30k! 20k-30k has been my "normal" for years.

WJ

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