HI All,
My hip is feeling better this afternoon, finally! I did soak in a warm tub a few times, that felt good and also sat on an ice pack a few times.
I've been SO tired since the IVIG! I've slept more in the past few days than I have in the last week! lol I guess that's just the infusion.
We haven't had rain all day and now we can hear thunder AGAIN! We don't need any more rain here in Houston.....but I think it's coming anyway!!!!
Hope everyone is having a good weekend! Roxie

Great stuff Roxie, glad to read your doing ok now, have a good weekend

comes with the territory sometimes...I always blame it on the whole infusion process: 1] all those extra 'filtered' pedigreed anti-bodies going to work on my entire system...working to fight my own warped immune system into shape and repair any damages; 2] the pre-meds, as one can get a re-bound effect from such direct administration [not to mention quantity] IV; and 3] that whole process of going through a whole new process!
Do you feel any changes, other than those for the worse? Don't be afraid if things start to feel just plain 'different' from day to day, hour to hour. If they feel worse in any definite way, call your doc's office or service-they do get back to you.
I don't want you to feel discouraged if you don't feel anything better,only worse, but not terribly worse-right away. That's why the docs try it out for 3-6 months at first to see how well you can tolerate it and then as time goes on if you notice any differences. The folks who have the horror-tale reactions, usually get them from the get go, for others nothing happens after 6 months the doc will stop infusions....But If I recall correctly, [I should recheck statistics -but I doubt they've been updated] it works for about 60% of the folks who try it...It won't be an 'imaginary issue' either, it'll show up in your blood work.
So, sleep well, and have some dreams - I don't know about you, but sometimes -maybe it's all the meds, but dreams seem to be in short supply [the sleep kind of dreams- I still have the awake kinds!]
's - j

HI J and Brian,
Well so far I'm just feeling tired. Tonight my hip feels much better, so I'll take the anti inflammatory tomorrow and then stop because they are really bad for my esophagus. Hopefully I won't have the hip pain after this next infusion....on Thurs.
I hope my energy returns because I have a Mamogram Tues. morning......going to a new Pain Managment dr. Tues afteroon......going to the Chiropractor and Massage therapist Wed....and then the infusion on Thurs........Maybe I'll sleep thru it this time! That would sure be nice! LOL
I do hope I'm one of the 60% who has good results from the infusion because in Jan. my insurance is renewed. So in Jan. I'll have to start paying the copays and coinsurance costs and I can't afford that.
Anyway, My husband is home now for 2 days so we have errands to run and things to do......so I won't have as much time to nap. Take care......Roxie

Hi Brian, Was it you who told me about the Fentanyl patch?
I saw the new pain management dr. today and he has lowered my Lyrica down to just 2 pills at night......and then I'm going to start using the Fentanyl patch to try to control the pain. He said that the patch comes off easy if you sweat.......well I live in Houston......it's 100 degrees down here now.......so every body sweats! I'm wondering if using one of those wrap tapes that Lab. people wrap around your arm after blood is drawn would help keep those patches in place? What do y'all think?? I don't want to have a problem with them not sticking because I'm outside a lot......even in the real hot weather. Thanks all!

Hi Roxie:

There is a special tape that goes over the patch. Alan got it from Johnson and Johnson. I forget what it's called but it comes in a box with about 50 tape things. It's a nice size thing that you peel it off and you place it right over the patch. Never came off and Alan showered every day with it.

Hopefully someone on these boards will remember the name of what I'm talking about. If not, I'm sure if you call the people who make the patches they will know what I'm talking about. There's an 800 number on the fentanyl patch box so you can call for information.

All the best,

Melody

HI Mel!
Thanks so much for that info about the patches that goes over the other patch. I was worried how I was going to keep the dang things on in this heat! I'll look into those tho.......Thank you!!! Roxie

Mel,
I'm using Dermacil tape over my patches for the lidocaine ones. It will go thru the shower. I think Dan P uses green duct tape on his. I'm not sure what you are talking about.
Billye

the tape they use to keep the IV lines IN you and then bandage the gauze onto you after they take the catheter out? That stuff is [according to each and every single IV nurse I've met] considered PURE GOLD! That's why the rolls of it come so small.
Or do you mean that beige colored roll of self stick bandage wrap stuff?
The first I've no clue where to get it - the second, I know where you get in in bunches and in colors and 'patterns', sort of. If the second, I'll give you a few sites to get it. - j

HI J and Billye,
The tape they use at the Infusion center is for after they remove the iv and then they put this brown colored wrap around your arm to hold the cotton ball in place over the iv spot. It only sticks to itself, not to your skin. If that is the expensive stuff then I'll have to look for something else to use to hold the patches on. Where do you get that wrap that comes in different colors etc?? That sounds good if it's not real expensive since the patches you have to change every 3 days. Thanks!