newly diagnosed newby
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September 28, 2007 at 2:11 pm
hi gang,
just wanted to pop in and say howdy. was just diagnosed with cipd last week. so far have had 2 bags of ivig….plus massive steroids…am now in rehab hospital relearning how to walk etc…….
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September 28, 2007 at 3:31 pm
Kthie we have you in our prayers and you will be meeting the others in the next days. remember we all have you in our prayers and we know more that many doctors do. Share you happynees,sadness,anger,with us as we all have done it ourselves. remember you in the end will be OK> Your friend (Steve)
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September 28, 2007 at 5:50 pm
Hello,
I’ve had CIDP since 1998, just remember that we do have hope. We may never fully heal so that we can go back to what was our “old” normal, but we can improve and get better and learn how to make a “new” normal.Come here and talk to us whenever you need to. Welcome to your new family where we feel what you feel.
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September 28, 2007 at 10:35 pm
Hi Kthie Welcome to The Family. Feel free to ask as many questions as you have or vent when you need to.
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September 28, 2007 at 11:26 pm
Welcome to The Family, Kthie. I think you will find a lot of people here who are have or are walking down the same road. If you have any questions, please ask.
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September 29, 2007 at 2:04 pm
Howdy to you too and welcome.
I hope you find the site helpful and visit us often 🙂 -
September 30, 2007 at 11:15 am
Hello welcome to the family
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September 30, 2007 at 10:12 pm
kthie,
Welcome aboard and don’t be afraid to ask questioins
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October 1, 2007 at 9:31 pm
but it is GOOD to know about others as well…You are not the only person from MARS! Ask questions, read prior posts and learn, no question is too simple or silly…
Just keep working at it, and it’s lots of work! and get better! -
October 2, 2007 at 2:32 pm
just wanted to pop in and say thanks to everyone…last couple days have been pretty rough as the dr’s try to find a good balance with the steroid curve they have me on……as of right now they are pumping me full of 1,000 mg prednisone iv once a week, and are talking about increasing the frequency if not the dosage due to a serious drop off of strength and stamina about 3 days before the new dose is due….was amazed today……..could barely stand yesterday and today not 2 hours after the transfusion was walking…..cant wait for tomorrow to see whats there then.
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October 2, 2007 at 3:30 pm
Kthie, Are you getting just steroids or are they combining the ivig with steroids-everyother infusion method? I’m Praying they find your magical mix soon!;) Stay Positive and rest. Take Care.:)
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October 2, 2007 at 5:02 pm
as of right now it’s just steroids once a week. they did 2 bags of IVIG right when they diagnosed my problem but they didnt think that was working so they went to 1000 mg prednisone in iv form and now are doing 1000 mg pred. iv once a week.
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October 3, 2007 at 12:38 am
I think you are referring to solumedrol, it is the IV form of steroids. Prednisone is the form of steroids taken orally. For 21 months I was infused weekly, sometimes bi-weekly with solumedrol to give me just enough strength to stay out of a nursing home. I gained 80# in that time period, required cataract surgery on both eyes (I was in my late 40s), had a horrible rash all over my body (still have scarring to this day), had terrible mood swings, sleeplessness the day of the infusions, etc. I know now that they no longer use 1,000 mg of solumedrol for their infusions, they instead start with 400-500mg at a time & see if that works as well. Maybe your doctors might want to try to see if a lower dose works as well, it might minimize the side effects.
Pam -
October 3, 2007 at 12:48 am
Pam
The IV version of prednisone is methylprednisolone…usually it is given as a
way to stop the immune system dead in its track. The dosage is usually
250 ml. a bag and can be given up to three bags at a time.I was given this in the hospital when I was in a bad attack. It’s the quickest
way to get prednisone in the body. They infuse it at a quick rate.Miami Girl
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October 3, 2007 at 12:08 pm
ooops….my bad, Pam is correct that it is solumedrol, although it is 1,000 mg given over 2 hours. The biggest side effects I am having is getting hotter than blazes for about 18 hours. Also got a minor heart attack this morning, was working on getting dressed for pt and the dr. came in telling me that i had to go get a series of x-rays on my back……..seems that the mri showed a compression fracture in the t-8 ??? area of my spine…..hmmmmmm no idea where that came from.:confused: :confused: :confused:
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