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From Roller Coaster to Big Dipper! on Promacta!

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15 years 7 months ago #1317 by snowgoose
Replied by snowgoose on topic Re:From Roller Coaster to Big Dipper!!!
Today's count is 209, I hope I am not about to climb sky high again, it is a dizzy ride!

Thank you for your encouragement Jenny. A verse from the bible gives me encouragement also - " I can do all things through Christ, who strengthens me " - Phillipians 4 v 13. Even when I feel weak, I can count on Him :) Even when I have no idea how things will turn out :) I can count on Him :)

Vanessa :)
  • 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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15 years 7 months ago #1343 by Sandi
Replied by Sandi on topic Re:From Roller Coaster to Big Dipper!!!
Vanessa:

You win the award for getting the most pages on the new Forum.

You also win the award for having the largest platelet spike and drop in a short period of time.

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  • Angel85
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  • I am 27 years old from Australia and I have T.A.R Syndrome. My email address is not showing on my profile for some reason so it is blossom_242@hotmail.com for anyone who wants to send me an email.
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15 years 7 months ago #1367 by Angel85
Replied by Angel85 on topic Re:From Roller Coaster to Big Dipper!!!
Hope they don't go back up too much higher, you don't want to be in that same position again that you were in a few weeks back
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15 years 6 months ago #1547 by snowgoose
Replied by snowgoose on topic Re:From Roller Coaster to Big Dipper!!!
Sandi, I am very honoured to receive these two prestgious wards :laugh: . I have never had a trophy before, let alone two :cheer: ! Thank you, thank you, thank you :laugh: !! However it must be pointed out that a page on the the new forum, is not nearly as great an achievement, as a page on the old forum!!!

Here we go again.......This week has seen my count on the rise again. On Monday it was 242, and by Thursday it was 462, which has meant that I have had to stop taking the Eltrombopag/Promacta again. They are not sure what is causing the current rise. I am a mystery to my trial nurse and Drs :huh: . Based on the way I am feeling with a constant headache at the back of my head, I would not be surprised if it has risen further over the weekend. Another count tomorrow........

Vanessa
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15 years 6 months ago #1587 by snowgoose
Replied by snowgoose on topic Re:From Roller Coaster to Big Dipper!!!
361 today...............???
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15 years 6 months ago #1889 by snowgoose
Replied by snowgoose on topic Re:From Roller Coaster to Big Dipper!!!
The saga continues........I am still off the Eltrombopag/Promacta due to high count. After 3 days on Monday, of being off it my count was 361, down from 462. On Thursday it was 312, and yesterday Friday it was 195. All my bones are aching, I wonder what is going on now ;) :ohmy: ??
  • 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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15 years 6 months ago #1905 by Sandi
Replied by Sandi on topic Re:From Roller Coaster to Big Dipper!!!
Wow - you're on the biggest roller coaster I've seen!

Could be the meds making your bones ache - isn't that a side effect? Especially if your bone marrow is in over drive.
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15 years 6 months ago #1942 by snowgoose
Replied by snowgoose on topic Re:From Roller Coaster to Big Dipper!!!
Hi Sandi,

How are you doing? My brain fog has cleared sufficently now to have a go at explaining to you what my Haematologist felt was going on to cause my huge platelet spike :P .

Background........Prior to surgery my platelets were 20 so Intragam was given the day before to increase my count. On the day of surgery the Intragam had done it's job and platelets were 120.......surgery went ahead........fast forward one week after and platelets began to rise dramatically, by the end of that week they were 898 :woohoo: .
I had developed an infection in the operation site :blink: .

My Haematologist feels that the high platelets were a result of infection, surgery, and Eltrombopag. He said there were two forms of Throbocytosis (high platelets), the Essential form, which is a result of another disease ie leukaemia etc, and the second form, which I had developed, which is Reactive Thrombocytosis which is triggered by a trauma such as surgery or an accident etc.

He anticipated that my platelets would continue to rise for about 13 days after surgery, as this has been his experience in the past.

This however does not explain what is happening now. Two weeks ago platelets were back to 15 and Eltrombopag was recommenced, one week later they were 468, and Eltrombpag was stopped again. I am still off it at the moment, and platelets had dropped from] 312 on Thursday, to 195 on Friday. I think they have dropped again over the weekend as I have scattered petichiae.

I have been on Eltrombopag for 3 years now, and the aim of the trial is to look at the long term side effects of the drug. I wonder what the scientists at Glaxo Smith Kline will make of me, the past six weeks have been anything but normal :silly: . I think I am keeping them on their toes!!!

Back to hospital on Tuesday...........

Vanessa
  • 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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15 years 6 months ago #1948 by Sandi
Replied by Sandi on topic Re:From Roller Coaster to Big Dipper!!!
What was the highest you've been on Eltrombopag before surgery?
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15 years 6 months ago #1967 by julia
Replied by julia on topic Re:From Roller Coaster to Big Dipper!!!
Wow Vanessa, its a pity they couldnt give you some a couple of days to treat then leave until you need to treat again. You want to watch the roller coaster guys in florida will be stalking you to get tips for the worlds longest ride. Hope your little bones are feeling better soon.
Julia
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15 years 6 months ago #2122 by snowgoose
Replied by snowgoose on topic Re:From Roller Coaster to Big Dipper!!!
My visit to the hospital yesterday showed that my count has dropped to less then 10 ;) .

I am covered with petichiae, bruises and have big blood blisters in my mouth :S .

I have been lectured about going to the hospital as soon as any bleeding starts, and not leaving it for hours, as I did once before.

We are re-starting Eltrombopag for the 3rd time since my surgery on the 8/02/10, I seem to be responding to it differently post surgery.

It looks like it is going to be a long road to getting stabalized again, every time the dose changes, I have to go weekly to hospital for 4 weeks or longer.

Sandi, The upper limit for a platelet count for the trial for most of the past 3 years has been 200, and the protocol has been that the drug is stopped and re-started once it has gone down sufficently. I have gone over this limit at times as we attempted to get get the doseage right, but highest I would say from memory, without going through my diary would have been the high 200's. The current upper limit platelet count is 400, and then stop drug until count is under 150. My Haematologist is going to ask for an exemption, rather then stopping drug altogether if we decrease to a lower( the lowest ) dose.

Julia, Thanks for your encouragement :) . Is it warming up over your way now? I have always had a dream to visit England. I have cousins that I have never met, and I would love to go Cornwall, where many from my Dad's side are meant to have come from.
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15 years 6 months ago #2189 by julia
Replied by julia on topic Re:From Roller Coaster to Big Dipper! on Promacta!
Hi Vanessa, Bummer on your count hope they can mess about with the doses and get you stabalised quickly. You will get there!
If you ever make your dream trip over here dont be afraid to pop up to this end of England (the north) for a visit. Its colder here than the Cornwall end, I have a friend who now lives in south shields, he is from Cornwall and has most of his family there. It looks beautiful. Weather is slowly warming here, the crocuses are up in the front garden.
Good luck and take it easy!
Julia
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15 years 6 months ago #2339 by snowgoose
Replied by snowgoose on topic Re:From Roller Coaster to Big Dipper! on Promacta!
Julia, I don't know anything about the North of England, I am sure it is lovely too! If I head over that way, I'll give you a yell to put the kettle on!! :laugh:

Here in NZ we are not given a exact number when a platelet count is less then 10, just the comment "Less then 10". Today however, with a new laboratory processing tests, my count came back as 3 :ohmy: ! It was a shock to me, 3 sounds far scarier then "Less then 10".

I got a phone call early this morning to come to the Haematology Dayward for an Intragam transfusion. Hopefully this will tide me over until the Eltrombopag kicks in.

I am bruising at the drop of a hat, I only have to tap myself and I have a huge bruise. My skin is a patchwork of bruises in various shades of aqua, blue, green, yelow and a deep midnight blue almost black. You could play a very, very long game of Connect the Dots, using the petichiae on my legs, feet, stomach etc :P .


I am at the bottom of the rollercoaster road at the moment biding time, onward and upward would the direction the ride is heading......I hope! ;) :)
  • Angel85
  • Offline
  • I am 27 years old from Australia and I have T.A.R Syndrome. My email address is not showing on my profile for some reason so it is blossom_242@hotmail.com for anyone who wants to send me an email.
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15 years 6 months ago #2435 by Angel85
Replied by Angel85 on topic Re:From Roller Coaster to Big Dipper! on Promacta!
Wow, this is a big roller coaster your on at the moment, hope this doesn't go on for too much longer
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15 years 6 months ago #2544 by snowgoose
Replied by snowgoose on topic Re:From Roller Coaster to Big Dipper! on Promacta!
My count three days after the Intragam transfusion is 90, not sure if it is the Intragam still or the Eltrombopag kicking in, which was re-started last Tuesday. Another count Wednesday, and back to the hospital for trial visit on Thursday.
  • 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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15 years 6 months ago #2569 by Sandi
Replied by Sandi on topic Re:From Roller Coaster to Big Dipper! on Promacta!
Wow - you must be going crazy, poor girl!

On a funny note - I got a piece of junk mail addressed to you today. Your name, my address. It was from Mutual of Omaha Insurance Company. I got a kick out of that!
  • Angel85
  • Offline
  • I am 27 years old from Australia and I have T.A.R Syndrome. My email address is not showing on my profile for some reason so it is blossom_242@hotmail.com for anyone who wants to send me an email.
More
15 years 6 months ago #2592 by Angel85
Replied by Angel85 on topic Re:From Roller Coaster to Big Dipper! on Promacta!
I hope this doesn't go on to much longer for you Vanessa, this is getting really crazy.
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