Re: remicade infusion today - another one bites the dust i guess

[Guest guest]

> >

> > Well - so is my luck. I had my second remicade infusion today, or

> tried to have it. Within 15 minutes of starting the infusion I had

> a really bad allergic reaction to it. It started with severe pain

> in my chest and shortness of breath and lungs wouldnt move at all

> then the pounding heart and the awful taste in my mouth and severe

> chills and some shivering. They did at least act very quickly

> because at least I was talking to the nurse at the very moment it

> happened thank god for that. But the thing is they administered

> whatever they did to make it okay and after 40 minutes or so the

> team of neuros, against the ers drs insistance, decided to try and

> give me the remicade again with a higher dose of iv steroids to see

> if it would help me tolerate the medication. within a couple

> minutes the heavy heavy awful chest pain started again and the

> terrible taste in my mouth and the stopped the medication infusion

> immediately. it was a terrifying event. i thought i was going to

> > die to be honest. i dont think i have ever been more frightened.

> >

> > i still feel horrid and have some troubles. things didnt go well

> with the drs either. long sotry im not up for telling.

> >

> > and now i dont know what i will do for medication.......... back

> to square one.

> >

> > love to you all,

> > kim

> > nsmoderator

> >

> >

> > ---------------------------------

> > Yahoo! Messenger with Voice. PC-to-Phone calls for ridiculously

> low rates.

> >

>

[Guest guest]

Becky,

My one neurologist wanted me to try Cellcept, so I'll be very interested in how

you tolerate

it and whether it works. Both my neurologists have now agreed to try Remicade

first, since

it has been tried more and is starting to have a positive track record. Don't

know when I'll

actually get my first infusion. Could be any week now.

-

> > >

> > > Well - so is my luck. I had my second remicade infusion today, or

> > tried to have it. Within 15 minutes of starting the infusion I had

> > a really bad allergic reaction to it. It started with severe pain

> > in my chest and shortness of breath and lungs wouldnt move at all

> > then the pounding heart and the awful taste in my mouth and severe

> > chills and some shivering. They did at least act very quickly

> > because at least I was talking to the nurse at the very moment it

> > happened thank god for that. But the thing is they administered

> > whatever they did to make it okay and after 40 minutes or so the

> > team of neuros, against the ers drs insistance, decided to try and

> > give me the remicade again with a higher dose of iv steroids to see

> > if it would help me tolerate the medication. within a couple

> > minutes the heavy heavy awful chest pain started again and the

> > terrible taste in my mouth and the stopped the medication infusion

> > immediately. it was a terrifying event. i thought i was going to

> > > die to be honest. i dont think i have ever been more frightened.

> > >

> > > i still feel horrid and have some troubles. things didnt go well

> > with the drs either. long sotry im not up for telling.

> > >

> > > and now i dont know what i will do for medication.......... back

> > to square one.

> > >

> > > love to you all,

> > > kim

> > > nsmoderator

> > >

> > >

> > > ---------------------------------

> > > Yahoo! Messenger with Voice. PC-to-Phone calls for ridiculously

> > low rates.

> > >

> >

>

[Guest guest]

Oh Kim do you know how good it is to hear

your voice, really it feels like I can hear you. I am sorry you are still

having problems, darn it! Would be so nice if the Remicade would work for

everyone! Did your older kids come home for the summer? Are they back at

school? I think about you often and when I think of you, I say a prayer for

you. There just has to be something out there! I hope you can stay with us

know, as you have been missedJ

Blessings,

Marla

>

>

>

> >

> > Well - so is my luck. I had my second remicade infusion today, or

> tried to have it. Within 15 minutes of starting the infusion I had

> a really bad allergic reaction to it. It started with severe pain

> in my chest and shortness of breath and lungs wouldnt move at all

> then the pounding heart and the awful taste in my mouth and severe

> chills and some shivering. They did at least act very quickly

> because at least I was talking to the nurse at the very moment it

> happened thank god for that. But the thing is they administered

> whatever they did to make it okay and after 40 minutes or so the

> team of neuros, against the ers drs insistance, decided to try and

> give me the remicade again with a higher dose of iv steroids to see

> if it would help me tolerate the medication. within a couple

> minutes the heavy heavy awful chest pain started again and the

> terrible taste in my mouth and the stopped the medication infusion

> immediately. it was a terrifying event. i thought i was going to

> > die to be honest. i dont think i have ever been more frightened.

> >

> > i still feel horrid and have some troubles. things didnt go well

> with the drs either. long sotry im not up for telling.

> >

> > and now i dont know what i will do for medication.......... back

> to square one.

> >

> > love to you all,

> > kim

> > nsmoderator

> >

> >

> > ---------------------------------

> > Yahoo! Messenger with Voice. PC-to-Phone calls for ridiculously

> low rates.

> >

>

[Guest guest]

,Remicade wasn't an option for me b/c of the cardiac sarcoid involvement. All these potent meds are a bit scary but the alternative is worse. Having my dental work done this week (couple of teeth to be pulled today) so hopefully will be able to begin the Cellcept soon. I've been to s Hopkins in Baltimore, MD, twice since November. They have a sarcoidosis clinic that was started in the 1950's. That is where the Cellcept idea came from since my physicians' in Tampa, Florida were at a loss. Will let you know how it goes. Wishing you the best,Beckywendy_cidp wrote: Becky, My one neurologist wanted me to try Cellcept, so I'll be very interested in how you tolerate it and whether it works. Both my neurologists have now agreed to try Remicade first, since it has been tried more and is starting to have a positive track record. Don't know when I'll actually get my first infusion. Could be any week now. - > > > > > > Well - so is my luck. I had my second remicade infusion today, or > > tried to have it. Within 15 minutes of starting the infusion I had > > a really bad allergic reaction to it. It started with severe

pain > > in my chest and shortness of breath and lungs wouldnt move at all > > then the pounding heart and the awful taste in my mouth and severe > > chills and some shivering. They did at least act very quickly > > because at least I was talking to the nurse at the very moment it > > happened thank god for that. But the thing is they administered > > whatever they did to make it okay and after 40 minutes or so the > > team of neuros, against the ers drs insistance, decided to try and > > give me the remicade again with a higher dose of iv steroids to see > > if it would help me tolerate the medication. within a couple > > minutes the heavy heavy awful chest pain started again and the > > terrible taste in my mouth and the stopped the medication infusion > > immediately. it was a terrifying event. i thought i was going to > >

> die to be honest. i dont think i have ever been more frightened. > > > > > > i still feel horrid and have some troubles. things didnt go well > > with the drs either. long sotry im not up for telling. > > > > > > and now i dont know what i will do for medication.......... back > > to square one. > > > > > > love to you all, > > > kim > > > nsmoderator > > > > > > > > > --------------------------------- > > > Yahoo! Messenger with Voice. PC-to-Phone calls for ridiculously > > low rates. > > > > > >

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