Looks like I am going back on copaxone.

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mystery reader
Regular Member


Date Joined Jun 2007
Total Posts : 257
   Posted 1/7/2009 6:34 PM (GMT -7)   
Met with ms neuro in St. Louis.  Found out that 1/2 of her time is spent seeing patients and the other 1/2 is devoted to conducting ms research.  She believes that there will be oral meds for ms "soon."
 
She felt that I should try some type of treatment since I have 2 or 3 new lesions in the past year.  So I am going to try copaxone again and she recommended that I try to manually inject.  So I am hoping with the smaller needles and by slowly injecting the "crud" ( tongue )  I will have less injection site reactions and definitely less IPIR's.  If I cannot tolerate it, then she recommends I try imuran or somthing similar to it. 
 
On a more positive note, she felt that I performed well on the physical exam and also stated that my ms is still relatively mild based on the number of lesions and their size.
 
 
After I asked her a number of questions, she said I was welcomed to have an appointment with her at any time.  At the beginning of my appt, she expressed that she did not understand exactly why I was there since she had consulted with my neuro over the phone.  Then I explined why I wanted her opinion -- that I did not know what to do.
 
After she reviewed my MRI's and conducted her exam she stated a few times she was glad I had made the appointment. I got the impression that she felt that he was overreacting to a degree.  She definitely does not agree with his suggestion that I try rituxan at this point given my reactions to meds and the status of my ms.  I think she was also perplexed with the fact that he will not prescibe certain drugs.
Barb/mystery reader
Diagnosed April 2007
Started betaseron --  May 2007 -- experienced allergic reactions after 2 weeks
Started copaxone -- June 2007 -- stopped after 4 1/2 months;experienced  severe 5 IPIR's
Started tysabri -- December 2007
Stopped tysabri -- April 2008 (developed antibodies/severe reactions)


rhondab
Veteran Member


Date Joined Mar 2006
Total Posts : 2146
   Posted 1/7/2009 10:47 PM (GMT -7)   
Wow Barb!!!!

I"m so happy for u!!! I do hope the Copaxone works out for u and that u'r able to manage it without any IPIR's. That would be so great! Take care my friend and please let us know how this all goes for u!
rhonda
Co-Moderator, MS Forum
 
*~*Sometimes the Lord calms the storm. Sometimes He lets the storm rage and calms His child.*~*
 
Things that make u go hummmm......
*I wonder how much deeper the ocean would be without sponges.*
*One day without sunshine is like...um..well...night?*


Sunnycitrus
Regular Member


Date Joined Apr 2007
Total Posts : 334
   Posted 1/7/2009 11:12 PM (GMT -7)   
Hey Barb,

It sounds like the neuro you saw had a reasonable approach to the whole thing… I must admit she sounds a whole lot better than your regular neuro ;-). I know you’ve been agonizing over this huge med decision…how are you feeling about the whole thing? I’ve got my fingers crossed that the new needles and slow manual injections will do the trick, and you’ll be able to tolerate the Copaxone this time!

Sunny

healing spirit
Regular Member


Date Joined Mar 2008
Total Posts : 177
   Posted 1/8/2009 6:14 AM (GMT -7)   

Hi Barb,

Glad to hear that this doctor has been encouraging.  It is terrible when you are going back and forth on what to do regarding meds.  I hope the Copaxone works this time.  I have been off rebif for 23 days and go back to the neuro monday to decide what to do next.  I had high liver enzymes with lots of side effects.  I am afraid of the Copaxone but will try it.  Good luck and let us know what happens.

Cindy


Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3547
   Posted 1/8/2009 7:16 AM (GMT -7)   

Hey Barb,

I love the sound of this new neuro.  I hope you stick with this one.  I know it is a long drive but possibly worth it?  I am glad to hear she is wanting to try the copaxone.  I know you had problems with IPIR in the past but give it one more try before going with the bigger guns. 

It is such good news that despite collecting more lesions (stop that by the way...terrible hobby) that you are holding pretty steady on the abilities.

I have really good luck with the smaller gauge needles and I have always injected real slow and deep and I have nothing to complain about.  I did have a couple of those IPIRs but not in a long time.  It is possibly an adjustment side effect?  Good luck!!  When do you start back on the copaxone.


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.


mystery reader
Regular Member


Date Joined Jun 2007
Total Posts : 257
   Posted 1/8/2009 7:41 AM (GMT -7)   
I am not sure when I will be strarting. She was sending a report back to my local neuro and then I assume they will put in the order. I imagine it will take at least a few weeks to set the whole thing up again. I do want to be retrained since they really spent most of the training period the last time showing me how to use the automatic injector. I also have no idea how I can possibly manually inject into my hips -- just can't twist around the right way. I have also read that people are now firmly pressing on their injection sites for about 30 sections afterwards and that is helping to a degree with lessening injection site reactions. I still think that IPIR's are caused by hitting a blood vessel or vein or something. Everytime I had one, I also experienced more bleeding than usual.
Barb/mystery reader
Diagnosed April 2007
Started betaseron --  May 2007 -- experienced allergic reactions after 2 weeks
Started copaxone -- June 2007 -- stopped after 4 1/2 months;experienced  severe 5 IPIR's
Started tysabri -- December 2007
Stopped tysabri -- April 2008 (developed antibodies/severe reactions)


Sunnycitrus
Regular Member


Date Joined Apr 2007
Total Posts : 334
   Posted 1/8/2009 1:25 PM (GMT -7)   
Hey Barb,

You know how after training, the Copaxone nurse watches you do the first shot…you might choose a hip location as your first injection spot, so the nurse can see firsthand where you run into trouble, and help you figure this out right away.

Sunny

mystery reader
Regular Member


Date Joined Jun 2007
Total Posts : 257
   Posted 1/8/2009 2:36 PM (GMT -7)   
Good idea Sunny!
Barb/mystery reader
Diagnosed April 2007
Started betaseron --  May 2007 -- experienced allergic reactions after 2 weeks
Started copaxone -- June 2007 -- stopped after 4 1/2 months;experienced  severe 5 IPIR's
Started tysabri -- December 2007
Stopped tysabri -- April 2008 (developed antibodies/severe reactions)


bohuck2
Regular Member


Date Joined Dec 2008
Total Posts : 196
   Posted 1/20/2009 4:22 PM (GMT -7)   
Barb,
I agree with Sunny, that way you will be able to ask her what you did right or wrong and you can get a professionals answer. Great idea Sunny, you little skinny thing 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.


mystery reader
Regular Member


Date Joined Jun 2007
Total Posts : 257
   Posted 1/25/2009 12:39 PM (GMT -7)   
The copaxone is being delivered on Tuesday and a nurse is coming on Wednesday afternoon for training. Wish me luck!
Barb/mystery reader
Diagnosed April 2007
Started betaseron --  May 2007 -- experienced allergic reactions after 2 weeks
Started copaxone -- June 2007 -- stopped after 4 1/2 months;experienced  severe 5 IPIR's
Started tysabri -- December 2007
Stopped tysabri -- April 2008 (developed antibodies/severe reactions)


rhondab
Veteran Member


Date Joined Mar 2006
Total Posts : 2146
   Posted 1/25/2009 2:03 PM (GMT -7)   
Best wishes Barb! Please let us know how u do. I"m here in u'r corner friend!
rhonda
Co-Moderator, MS Forum
 
*~*Sometimes the Lord calms the storm. Sometimes He lets the storm rage and calms His child.*~*
 
Things that make u go hummmm......
*I wonder how much deeper the ocean would be without sponges.*
*One day without sunshine is like...um..well...night?*


healing spirit
Regular Member


Date Joined Mar 2008
Total Posts : 177
   Posted 1/25/2009 4:47 PM (GMT -7)   

Best of luck Barb.

Keep us posted.  My Copaxone should be on the way in the next 2 weeks.  Hang in there.

Cindy

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