IVIg is working, fever going down
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October 10, 2007 at 3:25 am
Well I’ve been holding my breath for a couple of days but it does appear that the IVIg is working. I woke up Monday night soaking wet and my fever was down to 99.0 – it went back up again later in the day but it hasn’t been that low in more than a year. This morning it’s 99.8 but still, it hasn’t been below 100.5 for [U]more than a year[/U]. My legs are steadier too – I was able to do quite a few things around the house yesterday before they started giving out on me. I’m trying hard not to get too excited, I know this is just the first step but WOO HOO! 😀
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October 10, 2007 at 7:39 am
Julie,
After being so sick for so long don’t the little things mean so much? Glad to hear you’re doing better, hope things keep improving. -
October 10, 2007 at 10:31 am
Julie,
I am glad the IVIg is working for you ! I’m glad you mentioned the fever. I always have a low grade fever, too…never knew why b/c I have it even when I feel ok. It never went away with the IVIg…but, that stuff doesnt work for me anyway. At least, not noticabley. It may have worked to keep things stable, but I didnt improve with it.
I am so glad it’s working for you, tho !
Try to take things slow…I know it’s hard not to want to accomplish everything on a good day. It’s frustrating…but keep up the good work.take care.
Stacey
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October 10, 2007 at 11:24 am
Julie,
What great news! I am glad things are working, and I am glad the home health nurse situation ran smoothly. Good luck!
Dawn Kevies mom -
October 10, 2007 at 12:39 pm
Julie,
That is great news. Dell is doing much better with his fevers too. He usually has a normal temp until he gets the fevers. Coincedently, he has a fever now but my other son is home with a cold so I think Dell has the cold.
When he sleeps, he never wants a cover.
Lori
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October 10, 2007 at 9:57 pm
Let the dissapointment pass
Let the laughter fill your glass
Let your illusions last,until they shatter
Whatever you may hope to find amoung the thoughts that crowd your mind their wont be many that ever really matter;so take care of your mother(self)and remember to be kind
Let the pain of another serve you to remind;that there are those who feel themselves exiled upon whom the fortune never smiles and upon whose lives the heart aches have been piled.
There just lookin for another lonely child.Jackson Browne
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October 11, 2007 at 1:25 pm
Well the burst of energy was short lived but I still think the IVIg is helping. I seem to recover from doing things a little quicker than I did and I’m not so completely wiped out by the end of the day.
Does anyone have any advice on how to prepare if you have to have surgery? I’m going to have to get my shoulder fixed at some point and I’m wondering if I should get a couple more rounds of IVIg in me first, or just get it done and move into recovery mode and if there are any special preparations you would recommend.
I feel for all you parents out there – this is a whacky time of year and it seems like all my friends with kids are running around like squirrels collecting nuts for winter. :p
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October 11, 2007 at 2:11 pm
I just asked my neuro this very question on Mon. He told me he didn’t feel there needed to be anything different done in regard to anesthesia. He told me to just make sure they knew of the history of CIDP in case there happened to be any issues with my breathing. I would of course want to be in my best “shape” prior to surgery so if that meant more IVIG, I would say to try and obtain it, but I am not a physician! Good Luck! Glad to hear things seem to ber better for you. Take the gains when they come! 🙂
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October 12, 2007 at 7:24 am
Julie,
When I took my last serious tumble and had a plate put in my arm I had to stop some of the meds before surgery. No anti-imflamatories, no ‘roids. Be sure to discuss your meds with your doc as some take some time to get out of your system. I was doing solu-medrol at the time, they canceled my treatment and switched to the IVIg before the surgery and during the healing process.
Pattie -
October 12, 2007 at 7:48 am
Thank you Jan and Pattie!
I am not taking anything except vitamins and baby aspirin so getting off meds won’t be a problem. My poor orthopedist is really nervous, he has done surgery on me twice in the last couple of years and each time I have gotten worse. I expect nothing will happen until next year but who knows. I’m getting more and more numb in my left arm and previously it was the only limb not effected by CIDP.
Have a good weekend everybody!
Julie
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October 12, 2007 at 1:32 pm
There has been some concern that the anesthesia can bring on more damage. The thought is that your body is being put into such a state that it can’t fight off the bad antibodies anymore.
Emily was put under 8 times in 11 months. She only got worse once after anesthesia – that we could really tell.
I would talk to your neuro about when to go ahead with the surgery.
Good luck,
Kelly -
October 17, 2007 at 5:09 am
Ok something isn’t working right now. My fever has gone up to 101.7-102 for the last 5 days, my legs are burning, throbbing and ultra-weak, I’m getting lots of neuro-shocks, I can’t eat, I can’t sleep, and it’s hard to take a full breath because my stupid stomach is sticking out like I’m 6 months pregnant. I feel like this is a relapse but how is that possible since I just had IVIg? Can you have a rebound effect from IVIg? My relapses over the last year haven’t been this bad so I’m confused and feeling like doggy doo-doo. 🙁
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October 17, 2007 at 9:32 am
Hi julie,
I don’t know how much advice I can give you. But wanted let you know I feel your pain and how sorry i am you fee crappy.
I would call your home infusion nurse and see what she says. Then call the infusion pharmacist for advice. If that dose not help call your neuro or pcp.
Because i agree with you something is not right.
I would think with the IVIg in your system you would not have a relapse. But every time i think ok this is good thing i will feel better the opposite happens.
My last 2 infusions i felt yucky and all i did was sleepand had no appetite go figure.
As soon as I think i have established some sort of pattern oh no this stupid disease decides to make a change.
Oh enough about me.
Please call and see what they have to say, it will give you piece of mind. Can your husband make the calls if you don’t feel like it?
Please know I truly understand your distress. I willbe thinking about you today. Hopefully you can go from doggy doo doo to just doggy doo then to yeah come on doggies let’s play 🙂
Hugs and Friendship from Texas.
valerie
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