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From Roller Coaster to Big Dipper! on Promacta!

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15 years 7 months ago #908 by snowgoose
Replied by snowgoose on topic Re:From Roller Coaster to Big Dipper!!!
The count for today is............748, hopefully on the way down, but I won't count my chickens before they hatch! ;)

Marcus, They did not give me anything prior to surgery apart from the Intragram infusion, and my trial dose of Eltrombopag.

Julia, We don't have Walnut Whips here. I don't blame you for taking the Walnut off, I don't like them either! There is a big fuss here at the moment as people are demanding that the Cadbury Creme, which is now made in the UK, be brought back to NZ, and made here. The people just might win, as they did late last year when Cadbury blocks, were made using palm oil.The public protested and the company surrended, and reverted to cocoa butter. :)

I searched on the old forum for Lib and high platelets, and you were right she did have a very high count on Nplate. Thank you for that.

Mine, however is a combination of the trauma of surgery, the intragam, the infection in the operation site, and the Eltrombopag.
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15 years 7 months ago #935 by snowgoose
Replied by snowgoose on topic Re:From Roller Coaster to Big Dipper!!!
Down another 100 from yesterday to 647 :) ! Hopefully a trend!

Vanessa ;)
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15 years 7 months ago #941 by julia
Replied by julia on topic Re:From Roller Coaster to Big Dipper!!!
Great news i hope it levels out nice. Are you feeling any better?
Julia
  • 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 #963 by Sandi
Replied by Sandi on topic Re:From Roller Coaster to Big Dipper!!!
:laugh: :laugh: :laugh:

Good news, girl!
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15 years 7 months ago #970 by LindaDorasami
Replied by LindaDorasami on topic Re:From Roller Coaster to Big Dipper!!!
'Hopi :) ng you have a speedy recovery and feeling great soon! :)
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15 years 7 months ago #973 by snowgoose
Replied by snowgoose on topic Re:From Roller Coaster to Big Dipper!!!
This update for today is brought to you by the numbers 5 and 3. As in the number 535, which is today's platelet count. Down by another 100 or so :) ! And by the letters,D,T and C, as in Downward Trend Continues!

I saw my Dr today, and she was pleased that op cellulitis infection seems to have cleared :) .

Op site is still painful, but she said it will take about 6 weeks to heal.

Thank you for your encouraging words Sandi, Julia and Linda. I am beginning to feel better, although very tired.

Off for a MRI of swelling in leg tomorrow, and trial visit on Friday, it is neverending ;) ! :)
  • Sandi
  • Offline
  • 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 #993 by Sandi
Replied by Sandi on topic Re:From Roller Coaster to Big Dipper!!!
MUCH better news!
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15 years 7 months ago #1013 by snowgoose
Replied by snowgoose on topic Re:From Roller Coaster to Big Dipper!!!
Down by almost another 230 overnight, to 308.

Vanessa ;)
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15 years 7 months ago #1015 by alisonp
Replied by alisonp on topic Re:From Roller Coaster to Big Dipper!!!
Ok, time to put on the brakes now!
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15 years 7 months ago #1031 by julia
Replied by julia on topic Re:From Roller Coaster to Big Dipper!!!
Vannessa you sound much better, have you been watching Sesame Street by any chance :huh:
Hope your stabilising now stop dropping!!!!
Julia
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15 years 7 months ago #1054 by chot
Replied by chot on topic Re:From Roller Coaster to Big Dipper!!!
wow, vanessa...it seems you are having more than a typical itp experience...trev had the intragam for his op..and got absolutely no response at all..so no go...cant mak the chat anymore unfortunately , as footy training for the under 18,s goes a lot later... :S anyway..hope it all evens out for u soon..<3 cathy
  • 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 #1057 by Angel85
Replied by Angel85 on topic Re:From Roller Coaster to Big Dipper!!!
Good to see they are dopping now, hopefully they won't drop too much further.
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15 years 7 months ago #1060 by snowgoose
Replied by snowgoose on topic Re:From Roller Coaster to Big Dipper!!!
Welcome to Day's of Our Platelets, Episode 11, the saga continues! :P

Today's count is down by another 150 overnight to 158, at this rate it will be less then 10 by tomorrow ;) !

What a week and a bit, this has been!!

I would like it noted that for the past 2 days, my count has fallen in the normal range. I know this is only temporary, but it is nice to be normal, if even for a short time! :silly:

My Haematologist has stopped the asprin, and I am to re-start the Eltrombopag/Promacta. It normally takes about 2 weeks to kick in, so it is likely to be a couple of weeks of very low counts, as a balance is hopefully achieved.

Cathy, We miss you on the chat. Maybe there is another time in the week that would suit you and everybody else, so that you can join in. What time/day would suit you? We can talk about it next week. So they attempted to operate on Trev's hip, and could not get the desired count :( . How disapointing! Is he still on the Eltrombopag? P.S It is nearly Easter again, have you finished last year's egg yet?? :)

Vanessa
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15 years 7 months ago #1068 by lili
Replied by lili on topic Re:From Roller Coaster to Big Dipper!!!
Normal is always good. I'm glad to hear that your platelets in a good range and I hope that they don't bottom out too low.

I'm also sorry to hear about Trevor's hip and that his platelet's are stubbornly stuck in the cellar.

Lily
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15 years 7 months ago #1088 by snowgoose
Replied by snowgoose on topic Re:From Roller Coaster to Big Dipper!!!
Down, but not by much to 119, although sadly, my normal-ness has passed! :P Oh well, I knew it would not last, now I am back to being special! :laugh:

Julia, Sesame Street is not on here anymore, but I watched it in my childhood, and as you can tell, it has had a lasting effect :silly: !

Thanks Lili, but I don't normally do normal, so I was fairly certain, normal wouldn't last!! :P

Vanessa ;)

P.S I only have to have a blood test every second day now :)
  • 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 7 months ago #1089 by Angel85
Replied by Angel85 on topic Re:From Roller Coaster to Big Dipper!!!
Good to see they are back down, hope they don't go too much lower, 119 is just about perfect
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15 years 7 months ago #1091 by cindyduncan
Replied by cindyduncan on topic Re:From Roller Coaster to Big Dipper!!!
i know what you mean i had platelet transfusion and a few days later was down to 90 and falling
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15 years 7 months ago #1129 by snowgoose
Replied by snowgoose on topic Re:From Roller Coaster to Big Dipper!!!
:S My count today is 41, almost back to 19, which is where it was on the day prior to surgery, before this recent wild ride began :silly: :woohoo: I am SO exhausted, and feel like my platelets have dropped even more since the test at lunchtime. Platelet headache, aching bones etc. I have another week with hospital appointments every day :S

Vanessa.
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15 years 7 months ago #1130 by sharon309
Replied by sharon309 on topic Re:From Roller Coaster to Big Dipper!!!
So you are saying that a low count can cause headaches,aching bones and joints and tiredness?My daughters are at 43 now and that is how she is feeling she is 28.She was dx with IPT when she was preg. with her son 8 years ago.
  • 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 #1143 by Sandi
Replied by Sandi on topic Re:From Roller Coaster to Big Dipper!!!
What a ride, Vanessa! Sorry you had to take it.
  • 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 7 months ago #1160 by Angel85
Replied by Angel85 on topic Re:From Roller Coaster to Big Dipper!!!
Wow, thats a big drop from 119 to 41, hope they don't go much lower once you are back on the medication
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15 years 7 months ago #1162 by snowgoose
Replied by snowgoose on topic Re:From Roller Coaster to Big Dipper!!!
Hi Angel, It is not as big as the drops I was having each day for the past two weeks, it was going down by 150 to 250 overnight. I have started back on the Eltrombopag/Promacta in the past couple of days.

I have a hospital trial visit tomorrow, as I am back to weekly visits, due the drama of the past couple of weeks. I think my count has dropped again, as I have 2 blood blisters and petichiae in my mouth, and I am sooooo tired and achey.
  • Sandi
  • Offline
  • 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 #1179 by Sandi
Replied by Sandi on topic Re:From Roller Coaster to Big Dipper!!!
Sorry about that, Vanessa. Back to the usual. I hope Eltrombopag helps you.
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15 years 7 months ago #1189 by snowgoose
Replied by snowgoose on topic Re:From Roller Coaster to Big Dipper!!!
Hi,

My visit to hospital today, revealed that my count has dropped to 15, which I was sure of due to overwhelming fatique, platelet headaches and blood blisters.

The plan is to increase the dose of eltrombopag/promacta tomorrow if count is still low, I am back to having the blood lady come to me at home, until count is increasing and stabilised.

I am so tired, and having not long had surgery, and the infection, and hospital appointments just about every day has left me with no energy at all. :S
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15 years 7 months ago #1191 by liam12
Replied by liam12 on topic Re:From Roller Coaster to Big Dipper!!!
wow! when liams platelets are down he ALWAYS complains of sore bones aching muscles and general tiredness,his heamo told us that this is not consistent with itp,but having read your post im glad as i dont think im imagining things anymore thankou and goodluck, jenny :
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15 years 7 months ago #1222 by snowgoose
Replied by snowgoose on topic Re:From Roller Coaster to Big Dipper!!!
Today's count was 20, maybe the eltrombopag is starting to kick in!? Another count tomorrow...

Jenny, Liam is right! Platelet Headaches focussing over eyes, aching bones and extreme tiredness are a sure sign for me that my platelets are dropping fast. Hang in there Liam!! :)

Vanessa
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15 years 7 months ago #1254 by liam12
Replied by liam12 on topic Re:From Roller Coaster to Big Dipper!!!
thanks vanessa,im hlad your numbers are up a little.jenny and liam.
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15 years 7 months ago #1277 by snowgoose
Replied by snowgoose on topic Re:From Roller Coaster to Big Dipper!!!
Yesterday's count was 69! I am thinking the eltrombopag has kicked in, although with me you never can tell, as I swing constantly throughout the month. :)

Thanks Jenny and young Liam :) !

Vanessa
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15 years 7 months ago #1282 by julia
Replied by julia on topic Re:From Roller Coaster to Big Dipper!!!
Wow great count Vanessa! I hope your not going back to the top of that ride again youl be sick! :silly:
Julia
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15 years 7 months ago #1313 by liam12
Replied by liam12 on topic Re:From Roller Coaster to Big Dipper!!!
vanessa .i hope that you are feeling better , I read your posts and you seem like such a strong,positive person. Im sure all will work out well for you. :) we are thinking of you Jenny and Liam
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