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healing spirit
Regular Member


Date Joined Mar 2008
Total Posts : 177
   Posted 1/18/2009 6:47 AM (GMT -6)   
I just got home yesterday from a 24 hour stay in the hospital for my first solumedrol treatment.  They did 250 mg every 6 hours for 24 hours for my first gram to see how I would do.  Other than my blood sugar going up I did fine.  I was sent home with an IV in my hand so that today and tomorrow a home health nurse can give me the next 2 treatments.  My neurologist said it is a toss up on whether to give prendisone to taper off the solumedrol or not.  She said sometimes the prendisone has made it worse for people so she is not going to do that with me.  I figure if I am starting to feel crappy on Tuesday I might call and ask for a taper dose.  Just looking for opinions on this.  Also does anyone else get that metal taste from the drug?  The hot flashes aren't fun either.
 
Cindy
 
p.s...my doctor wants me to start Capoxone in the next couple of weeks.  I am going to try it.  Just nervous about the heart attack feeling after injection. 

Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3521
   Posted 1/18/2009 9:38 AM (GMT -6)   

Hey Cindy,

I hate coming down off the solumedrol, but I hate prednisone more.  I just suck it up and deal with it.  You are going to be very crabby and tired as you come down.  Yes I had the metal taste in my mouth.  And I had HORRIBLE heatburn.  Get on something now and stay on it through the week at least for heartburn.  The blood sugar deal is pretty common. 

I know you are nervous on the IPIRs......you just have to remember.....you are not actually in any sort of trouble.  It is just the sensation.  It really does pass.  I used a lot of relaxation breathing, my hubby stayed right there with me and rubbed my back and talked me through it.  Not everyone gets them.  Mine were very short lived........they lasted twenty minutes or so but the really intense part was less than ten minutes.  You may want to ask a therapist about relaxation techniques or how to deal with your fear response.  If you panic, you will certainly make it worse. 

I am so hopeful that the copaxone will help.  Stay positive and good luck!!!



Gretchen       co-moderator MS board       diagnosed with MS July 2006
 
I have no lesions on my soul and so I will live with no limits.


healing spirit
Regular Member


Date Joined Mar 2008
Total Posts : 177
   Posted 1/18/2009 11:36 AM (GMT -6)   

Hi Gretchen

They had me on Pepsid in the hospital and I am taking Prilosec OTC now.  So far so good.  I just had my first straight 2 hr 1 gram infusion and it went ok.  Since my doctor suggests no prendisone after, maybe I should try it.  If I get nuts I can always call.  Of course I was nuts before all this!  HA!  Thanks for all the advise.  My doctor said she has lots of people on Copoxone and only a couple of them ever had the IPIR's.  How long have you been on Copoxone?  Hopefully that will work for me.  She said we could go back and try another interferon if this doesn't work but I felt really bad on Rebif.  We will see.

 

Thanks again for all the input.

Cindy


bohuck2
Regular Member


Date Joined Dec 2008
Total Posts : 196
   Posted 1/19/2009 11:11 AM (GMT -6)   
Cindy,
The metal taste you get in your mouth is just something that goes with the treatment. Hopefully it won't bother you too much. As for Copaxone, I was on it for a while and didn't mind it, as I could just give myself the shots in the skin somewhere with the autoinjector. Just be sure not to set the autoinject to go too deep or you may hit a muscle, which hurts like hell! You should get someone from your Neuro's office to show you how to use it (if that's what you have, that was my choice because it was rather easy to use) before the first injection, at least I did. I didn't have much reaction to it but sometimes I would get some chest tightness but it went away after about 5 - 10 minutes. I just sat down and tried to relax when it hit. My neuro took me off of Copaxone because he re-diagnosed me from having RRMS to PPMS, which Copaxone doesn't work on. Good luck to my friend and God Bless you. Hopefully the Copaxone Treatments will be just the thing for you!


 
 
 
 
                                        Chuck the old man :>)
                                   AMWTP Training Instructor
                                          Idaho Falls, Idaho
                                  Diagnosed with PPMS May, 2006
                                   but still working at the present.         
                Tried just about everything there is for MS, including Tysabri
                               Waiting to start Cytoxin Treatments soon.

Post Edited (bohuck2) : 1/19/2009 10:15:33 AM (GMT-7)


healing spirit
Regular Member


Date Joined Mar 2008
Total Posts : 177
   Posted 1/19/2009 1:07 PM (GMT -6)   

Thanks Chuck for all your input.  I am going to go ahead with the Copaxone in a couple of weeks as soon as it is all set up through insurance.  Have a great week.

Cindy

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