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  • snowgoose
16 Feb 2010 04:44
My journey on the the roller coaster, that is ITP, has been going for 6 years now. This week I entered the Big Dipper phase of the ride!! :silly:

Last Monday I had surgery, and was admitted the day before for an Intragam infusion, as platelets at 20 were too low for surgery, despite being on 50mgs of Promacta/Eltrombopag, as part of trial for past 3 years. Next morning, platelets were 120, so surgery went ahead.

I was discharged Wednesday, and platelet count was 89, so thought Intragam was wearing off.

I had my weekly platelet count yesterday and my count was 577!!!!

My trial nurse ordered another urgent count today, to see if it was a true result, and lab ladies came to me, as I am still recovering from op. Very impressed by the speed they arrived in, only 45 minutes from phone call to visit!!

Today's result was ...........up even more to 648!!!!!

Now I have to stop the Promacta/Eltrombopag until count is back down to below 150, and I am back to weekly visits to the hospital :blink: :woohoo: :huh: .

Not feeling great at the moment :( .

The ride continues, with bigger hills and deeper valleys.

Vanessa
  • alisonp
16 Feb 2010 04:33
Replied by alisonp on topic Rollercoasters
About a month ago, the consultants secretary told me: "the only predictable thing about ITP is its unpredictability". Seems to be definitely true!

Both Dougie and me are getting good at guessing his count though. Everytime he goes to the hospital, we have a bet on with ourselves and whoever gets it right gets a doughnut or something in the cafe afterwards - it takes his mind off the bad part of the blood test! Anyway, this week his guess was 30-40 and mine was 35-45, so his count at 39 was right there.

Anyway, when we were at the hospital yesterday, there was a strong smell of burning in the Children's Centre and when we were leaving 4 fire engines turned up!!! I am just going to go on the local news to see if it was anything significant. Made a boring hospital visit much more interesting!

Ali
  • alisonp
16 Feb 2010 04:18
Replied by alisonp on topic Update on my platelet count
Angel,

I wouldn't want to be on your rollercoaster either!!!

Its lovely when Dougie's count does that - a week off from worrying about it at all! Hope your pred taper goes ok and that the n-plate works well too

Ali

:cheer:
  • Angel85
16 Feb 2010 04:13
Replied by Angel85 on topic Update on my platelet count
I'm not sure to be honest, but that's what the Doctor has asked me me to do, so i can start the nplate on friday, so i'll do it and if i start to have any major problems, i'll bring it up with him, i'll just see how i go, to be honest, i don't know if it could be any worse then how i am feeling now anyway, but we'll see.
  • snowgoose
16 Feb 2010 04:01
Replied by snowgoose on topic Update on my platelet count
That's great news! re your count. So pleased to hear you have had N-plate approved! Do you think a sudden decrease in prednisone dose by 20mgs might be a bit rough to handle? I remember decreasing at a slower rate, and even then it was not pleasent.

Vanessa
  • Angel85
16 Feb 2010 03:58
Replied by Angel85 on topic Rollercoasters
I agree, I can't predict my own anymore either, last week mine were 18 and this week they went up to 91, so i just can't tell either.
  • Angel85
16 Feb 2010 03:42
Replied by Angel85 on topic Update on my platelet count
Hey, I am so happy, my latest count came back at 91 today, up from 18 last week and i haven't changed my pred at all, so i don't know why such a drastic change, as long as it is in the right direction though. The Nplate has also been approved, so i will be starting that on friday and from tomorrow, i am reducing the pred from 40mg a day to 20mg!! So excited about the count, i hope the nplate can keep it up to those levels!!
  • Angel85
16 Feb 2010 03:27
Replied by Angel85 on topic ITP not Child Abuse
Oh, no, that's terrible, I'm so sorry you and your family are going through this, has Savannah been disagnosed with ITP yet, have they done any blood tests etc?? Sounds like they may not have done any tests or know about ITP, if the doctors and nurses already knew she had it or did tests that showed she had a lowered platelet count, they may not have been so quick to jump to that conclusion. I would ask for a second opinion and ask for your grandaughter to have some blood tests taken to see what her platelet count is, if it hasn't already been done.

When i was younger and had lots of bruises, my mum used to get looks from people when she used to take me places, the police even once sat down when we were having lunch one day and casually talked to mum, but nobody actually took me away from my parents, i wish i could give u some advise on what to do, it would be such a devastating situation to be in.

Your family is in my thoughts and i hope everything works out well for you all.
  • tigereyes
16 Feb 2010 01:39
Replied by tigereyes on topic Rhema Appt
Kim I have no idea how you manage after about 3 weeks I was ready to scrub my skin off with a brillo pad. How you have managed for years is beyond me.

Im not sure but I think there may be something wrong with my back. Ive noticed after running my left foot goes numb usually for a few hrs. Once I wake up in the morning its better but I know thats not normal. I should bring it up to my dr. Its kinda annoying to be honest with you. I dont run much just the dog in class but every week now my foot is numb like its asleep and will be like that until I wake up in the mroning.
  • Siliconvalleygirl
16 Feb 2010 01:29
Replied by Siliconvalleygirl on topic So annoyed with the "fresh boarder" label
Lol tamar! You are no fresh or junior boarder!
  • Savannah
15 Feb 2010 23:01
ITP not Child Abuse was created by Savannah
Please someone help me help my grand daughter!!! This past saturday my daughter called me up and she was frantic about her 5 month old daughter who woke up with bruises on her body,(chest, stomach, legs, around her eyes, and one bruise on the inside of her palm.)I really thought my daughter was thinking that my grand daughter has a rash of some sort but she was insisting that it was bruising and still was thinking it was just a rash. I called my other daughter and told her what my other daughter described to me and she said she was going over there to. We ended there about the same time and we were both in shock at what we seen, my grand baby bruised just like my daughter had told me on the phone. I told them to get her to the ER at CHKD and they did. As soon as they got there the doctor immediatly said it was child abuse and they were going to call a social worker and they did. They think my daughter and Savannahs dad abused her but I know that didn't. So child protective services has decided for Savannah to be placed with me until a further investigation has been done. This has been the most awfulest experience my family has been through. I just need to know if anybody else has went thru being of excuse for child abuse and if so what did you do to prove your innocence and that they were mistaken?

Please tell me anything that might help me - pictures, documented cases, or anything you can think of.

"Thanks GiGi.
  • lucidawn
15 Feb 2010 22:40
Replied by lucidawn on topic Rollercoasters
Ali,
I don't think you can predict. It does seem he is trying to recover, though. Hopefully he will finally balance out.
We are all riding with you :side:
  • Sandi
15 Feb 2010 21:59
You've graduated!
  • tamar
15 Feb 2010 21:08
Oh, hurrah, I'm now a "junior"!! :woohoo: :woohoo: :woohoo:
  • tamar
15 Feb 2010 21:07
Here's number 20...do I change to something other than fresh now?? :side:
  • tamar
15 Feb 2010 21:07
Well, one more and I will know :blink:
  • tamar
15 Feb 2010 21:06
If it's more than 20 I am going to be :angry:
  • tamar
15 Feb 2010 21:05
:ohmy: Could it be 20?
  • tamar
15 Feb 2010 21:05
I wonder how many posts it will take.....
  • tamar
15 Feb 2010 21:04
I think I will just respond to myself a bunch of times to get rid of that!! :S
  • Alissas mom
15 Feb 2010 20:17
nplate was created by Alissas mom
Hi Pauline,

I was wondering if your doctor ever mentioned whether Caitlin could try nplate again in the future? I know that with a spleenectomy Nplate may not work as well.

I think about you guys all the time. Hoping you the best,

Debbie (Alissa dx 2003)
  • alisonp
15 Feb 2010 13:44
Rollercoasters was created by alisonp
I am pleased that I am not really on the one that Dougie's counts would design - todays count was 39, so his counts in the last 4 months have been 5,124,33,60,16,104,39. Desperately trying to see a pattern, but I just can't......... Oh well, its fun to ry to tguess where his count is going - are we on the up, the down or just the straight bit????

Ali ;)
  • wildroseao@aol.com
15 Feb 2010 10:08
Replied by wildroseao@aol.com on topic Donating Blood
I am spleenless and they still LOVE taking my blood! (I don't have ITP.) I, too, am O-/CMV-. And I became a donor at my ITP daughter's request... Share the love--Share the blood! Ann, Caitlin's Mom
  • wildroseao@aol.com
15 Feb 2010 09:59
Replied by wildroseao@aol.com on topic Accessory Spleen
I had a splenectomy (but do not have ITP) and the docs noted an accessory spleen on my post-op notes, which they left in. It is my understanding that sometimes they can see them (I had an open splenectomy)--and sometimes they grow afterward. They can be pretty tiny, and there can be several of them. If it wasn't for the ITP, that would be a good thing! Ann, Caitlin's (22) Mom
  • liam12
15 Feb 2010 01:17
Replied by liam12 on topic LIAM COUNT 32K
thankyoy to every one for your feed back,its been a really big help, jenny :)
  • Bunnie
15 Feb 2010 00:57
Replied by Bunnie on topic Infertility & ITP
Have you been tested for thyroid antibodies? You can have the symptoms of hypothyroidism with a normal TSH. Fertility issues are common with thyroid problems and there is a higher chance of having Hashimotos or Graves if you have ITP.

thyroid.about.com/library/weekly/aa050199.htm
  • Sandi
14 Feb 2010 23:45
Replied by Sandi on topic dentist
Glad it went well. Tea bags can be very useful. I got rid of my sons planters warts with tea bags. It took weeks, but no gouging his foot at the doctors office.
  • gsh
14 Feb 2010 20:15
Replied by gsh on topic dentist
Thanks ladies. It went fine. I was their first ITPer. good to know about the tea bag!
  • gsh
14 Feb 2010 20:12
Replied by gsh on topic ITP and Pregnancy
60 is a great count. Many ITP women have had babies. There are some reviews out there documenting this. There is a good chance you'd need some treatment if you got below 30 or 20. Some women's count goes down during pregnancy but some go up - you really can't predict! You'd need 75 to get an epidural but a cesarean is not required. There's a small chance the baby will have your antibodies and therefore low platelets in the first week or so but you'd deal with it then. I imagine your hemo and the highrisk obgyn would be there.
  • circawdm
14 Feb 2010 19:07
tamar wrote:

DRT, if you go to the PDSA home page, you'll see a link that says "Now Available: New International Consensus Report on the diagnosis and treatment of ITP". If you navigate to that article, in the introduction you'll see that a diagnosis of ITP is now NOT recommended when platelets are above 100K (not the 150K that lab reports say is "normal"). That was my point in my post above...not being "normal" should not necessarily be a cause for concern.

As with many things that can be measured numerically, platelet counts happen to have a normal distribution and create a bell curve when graphed. The scientific community has chosen 2 std deviations from the mean as "normal", but by doing that, they are guaranteeing that there will be some people at either end of the curve that will be labeled "abnormal" even though there's no cause for alarm. Just some food for thought, which I hope will be helpful.



Thanks Tamar, :)

I agree with that, which is a large part of one of the things that I personally feel needs to be changed with conventional "Western medicine," where alot of things seem to be not only very "black and white," but where there is not much room for looking at things more "creatively" or outside the box. It reminds me of the psychiatry field of medicine, where it used to be the majority of them were taught various kinds of "talk therapy," and they used it in 50-60 minute sessions with their patients, in addition many times to prescribing meds.

These days, the people I know who have gone only to a psychiatrist (versus a psychologist, MSW, etc.) to get help with depression, anxiety or other issues, are quickly assessed and given medications, usually without a referral to someone who will also talk to them and help work on the causes, versus mask the symptoms with drugs. And with the exception of people with true psychoses, (bi-polar disorder and schizophrenia being the two best known) when cognitive, behavioral modification, Gestalt or other forms of talk therapy could help the non-psychotic folks get to the bottom of things without clouding their feelings with medications, they go once a month for 15-20 minutes for a "med check" with the psychiatrist and continue to think that medications they are on are the only thing that will get them "well." Often they never get well, instead becoming addicted to the medication. I personally think that borders on medical negligence in many cases, and alot of money going to the doctor and the drug companies. And we know how much they already rip off people who need meds but have no generics to use, or their meds are simply very overpriced. :angry:

Thanks again for your comments! :)

DRT
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