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Down to 0k this weekend

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15 years 5 months ago #3782 by Lorie85
Down to 0k this weekend was created by Lorie85
well I hit rock bottom this weekend. went for a CBC on friday I had 0K platelets. I started a dex pulse (the pulse is fine the coming off is the killer!)and reluctantly started 150 mgs of Azathioprine/ Imuran per day (posion in my opinion)but at 0K i feel like i have no options. My response to Dex pulse lasts around 10 days before it falls below 10k. Wish me all the best. I feel like i'm hoping for some kind of miracle here! hoping the platelets go up.
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15 years 5 months ago #3784 by julia
Replied by julia on topic Re:Down to 0k this weekend
Bummer Lorie, sorry your havig to deal with the dex, Dont worry about the Azathioprine everyone has different reactions to different drugs. Just wait too see what your count is in 6wks and see how your doing on it.
Julia
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15 years 5 months ago #3805 by tortie
Replied by tortie on topic Re:Down to 0k this weekend
I Hope it helps keep your counts up. It's pretty scary to hit 0k.
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15 years 5 months ago #3820 by Bunnie
Replied by Bunnie on topic Re:Down to 0k this weekend
Wow, it's no fun going into the weekend on a low note. I've always said there are times that the treatment looks and feels worse than the condition. Unfortunately, when we drop under 20-30 we have to make those hard choices. I've been extremely lucky that either no treatment or Winrho work for me, so I can't provide good advice for the other treatment options. It's clear that many of them take a toll on both the physical and emotional aspects.

Sometimes you have to be your own best friend and find those moments to re-charge and let the rest of the world go for a bit even if it means that you get a signs for the house with sayings like "you can touch the dust, just don't write in it". I'm sending a virtual hug and wishes that you find the treatment that lets you be in control of this frustrating autoimmune condition.
"I am an old man and have known a great many troubles, but most of them have never happened.\" — Mark Twain\\\\\\"Worry is a misuse of the imagination.\" — Dan Zadra
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15 years 5 months ago #3848 by Lorie85
Replied by Lorie85 on topic Re:Down to 0k this weekend
Thanks so much for all your support guys. Went and had a cbc done yesterday 92k! Yeah! I'm just trying to stay positive and hope that the good count lasts for a very very long time...
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15 years 5 months ago #3849 by gsh
Replied by gsh on topic Re:Down to 0k this weekend
sorry you've hit a tough time, Lorie. I've been down to 4k a few times. I've done 4 dex pulses and I agree, the 4-6 days after it's done are the worst. I found that I responded to 20mg and 30mg almost the same as 40mg and it lasted just as long although that was only about 10 days for me too. I figured why do 40 if it's all the same at 20. I don't know your experience, but I want to tell you that I was so against daily prednisone that I opted for dex pulses instead. Turns out, pred is much less disruptive to me and I have better results with it. I think the long-term ramifications are the same so I now prefer pred tapers. That's me, however.
I hope the next while goes better for you.
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15 years 5 months ago #3880 by Lorie85
Replied by Lorie85 on topic Re:Down to 0k this weekend
Thanks Gsh. I'm on my way down off the Dex, not fun, at all.. but better than the last two come downs i've had before. This is my 3rd dex pulse. I don't respond well to other steroids. I've been to 0 k on 80mgs of Pred :( . The Imuran sucks! been having tummy issues for the last couple of days. But still trying to be positive and hope the bad feelings blow over.
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15 years 5 months ago #3926 by tigereyes
Replied by tigereyes on topic Re:Down to 0k this weekend
Lori what does of Imuran are you on? When I started on the Imuran even at 12.5 dose I was getting nausous. It does go away after about a week or so. I gradually upped my dose and right now im at 100mg and in a few weeks Im going to start 125. Lowering your dose and working up to a full dose may help your tummy. Plus I found that taking it with bread helped alot.
Jennifer

Mother of 2 boys
Last Rituxan 12/09/09--3rd time around with not much sucess
Winrho-09/25/09 Didnt work.
IVIG--Countless times

Latest counts 8 4/2013-just started Promatca
Diag. 9/2006
  • 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 5 months ago #3927 by Angel85
Replied by Angel85 on topic Re:Down to 0k this weekend
sorry to hear they are down to 0k, Hope your feeling a bit better soon
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15 years 5 months ago #3991 by Lorie85
Replied by Lorie85 on topic Re:Down to 0k this weekend
I'm feeling a lil better.... now my feet are soo puffy (Like 2 posts) and my face like a dumpling, painful acne, yeahh for sterioids! lol. But I was trying to do 150 mgs of Imuran. That really wasnt working out lots of tummy pain and cramps. I seem to be able to tolerate 100mgs a little better. But still having tummy issues, pain and sour burping (gross I know). I hope your right Jennifer and it goes away quickly!
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15 years 5 months ago #3996 by tigereyes
Replied by tigereyes on topic Re:Down to 0k this weekend
It does get better. Once the levels adjust in your system you will start to not feel so nausous. I found it helped not to drink coffee it made it worse. I hope you start to feel better.
Jennifer

Mother of 2 boys
Last Rituxan 12/09/09--3rd time around with not much sucess
Winrho-09/25/09 Didnt work.
IVIG--Countless times

Latest counts 8 4/2013-just started Promatca
Diag. 9/2006
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