what happens if you cant tolerate MS meds

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healing spirit
Regular Member


Date Joined Mar 2008
Total Posts : 177
   Posted 9/19/2008 11:27 AM (GMT -6)   
I have a real sensitivity to meds.  I am already off the neurontin they put me on Monday.  I either break out in hives or it does the opposite of what its suppose to do.  I haven't started rebif yet as I am still waiting for the nurse to call and make an appointment to start me probably next week.  I am concerned about being allergic to any of these meds because of my history with other stuff.  Is there anyone out there that is meds sensitive but does alright (barring the usual side effects) with MS meds?  Just looking for some encouragement to calm my anxiety. 
Thanks for any input.  I am new to this and asking lots of questions.
 
Cindy

rhondab
Veteran Member


Date Joined Mar 2006
Total Posts : 2146
   Posted 9/19/2008 11:37 AM (GMT -6)   
Hey Cindy

O i hope u can tolerate the meds, but if not the rebif u'r docs will try u on one of the other meds. There is that chance that u won't be able to tolerate the other meds either and in that case u'r docs will talk with u about other options. One may be Tysabri. We have another member here who has had many probs with the ms meds. I hope she'll be along soon to give u some input. Hang on friend. There are options and i'm hoping and praying u will find that one of them works well 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......
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*One day without sunshine is like...um..well...night?*


healing spirit
Regular Member


Date Joined Mar 2008
Total Posts : 177
   Posted 9/19/2008 1:37 PM (GMT -6)   

Hi Rhonda and thank you for your response.  I am one of those opposite people so since rebif gives the flu like symptoms maybe I won't have any problem.  I will just keep thinking that way.  Thanks again for the kind thoughts.

Cindy


Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3524
   Posted 9/19/2008 5:01 PM (GMT -6)   
We do have another member that has very bad medication sensitivity.  (Mystery Reader..............come share your story!!!) 

Gretchen       co-moderator MS board       diagnosed with MS July 2006


mystery reader
Regular Member


Date Joined Jun 2007
Total Posts : 257
   Posted 9/19/2008 8:27 PM (GMT -6)   
Okay, here I am. I started to respond earlier, but then got sidetracked.

Hey Cindy, I undrestand your concerns. As Rhonda and Gretchen mentioned, I too have experienced some problems. I have been able to tolerate neurontin and a low dose of baclofen, but have not been too lucky with CRAB's or tysabri. I was on betaseron first, but experienced an allergic reaction once I increased my dose to the 50% level. This happpened in week three. I have been told by MS specialist this means I cannot go on any of the other interferons as they fear I will have an even worse reaction. Essentially, I experienced flushing and closing of my throat while on it.

My next treatment was copaxone. At times I wonder if I should have stayed on it, but I feel so much better not being on it. My first two weeks were easy, and then I begin to experiece the "normal" skin reactions. Even though the fist size welts were a pain, I could deal with them. What I could not handle were the IPIR's. You can read about them. Having had 5 serious ones in four 1/2 months, my neuro took me off the copaxone.

Finally I tried tysabri. I had five treatments, experienced three infusion/allergic reacions (each one worse) and delevloped antibodies. The infusions themselves were a piece of cake until I could not breath.

Okay, now I have probably scared you to death. That was not my intent, and perhaps I should edit this. I guess my only advice would that you have to try to fight this disease, and at this point these are the best treatments for most people. I have had problems with other drugs. I am allergic to penicillin, sulfa, and cirpo made me really sick. I also could not handle the four different antidepressants I tried. But just because I have had these problems, it did not stop me from trying the ms treatments. All you can do is try the rebif and see how you do. If you do not hav an epi pen you might ask your doctor to prescribe one especially if it woukld give you some piece of mind. Also make sure you have some benadyl around before you start any new treatment or med.

I am not on any treatment right now, but do take meds for sysmptoms. I will have another MRI in November and then meet with my neuro at that time. If it looks as though the ms is progressing then I will have to consider imuran which is a mild chemo drug. I also am planning on having the LDN discussion with him at that time.

Cindy, if you have any questons just email me.

Barb


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)

Post Edited (mystery reader) : 9/19/2008 11:28:40 PM (GMT-6)


Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3524
   Posted 9/19/2008 10:30 PM (GMT -6)   
Thanks Barb.  I knew I could count on you.

Gretchen       co-moderator MS board       diagnosed with MS July 2006


healing spirit
Regular Member


Date Joined Mar 2008
Total Posts : 177
   Posted 9/20/2008 5:46 AM (GMT -6)   

Hi Barb,

Thanks for the reply.  I am also allergic to PCN and Sulfa drugs, can't take the SSRI anti depressants.  Seems like what ever the meds are to do for me, they do the opposite.  I could tolerate Lyrica but with some side effects that were hard to take.  If my neuropathic pain gets worse then it is, I will try it again.  I am hoping I can tolerate something.  There are some drugs I am ok on and you didn't make me anymore nervous than I already am.  I appreciate your honesty.  I hope everything goes well with you and will think good thoughts.  I am still waiting for the Rebif nurse to contact me.  If I don't hear anything by Tuesday I will be making another call. 

Thanks again for all the info.  The epi pen and benadryl will be by my side.

Cindy


Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3524
   Posted 9/20/2008 9:11 AM (GMT -6)   

Cindy,

You are in my thoughts and prayers.  Good luck and tell us how it goes.


Gretchen       co-moderator MS board       diagnosed with MS July 2006


healing spirit
Regular Member


Date Joined Mar 2008
Total Posts : 177
   Posted 9/20/2008 12:44 PM (GMT -6)   

I will and thanks to everyone.

Cindy


mystery reader
Regular Member


Date Joined Jun 2007
Total Posts : 257
   Posted 9/21/2008 10:27 AM (GMT -6)   
Best wishes Cindy!   Let us know how you are doing.

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)


healing spirit
Regular Member


Date Joined Mar 2008
Total Posts : 177
   Posted 9/21/2008 6:10 PM (GMT -6)   

Thanks Barb, I will

I was searching for a drug other than the anti seizure drugs for neuropathic pain and noticed some people take baclofen.  I noticed in one of the older posts that you are able to take that drug.  Do you take it for the parasthesia?  I am looking for some sort of alternative that will work.

Cindy


Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3524
   Posted 9/21/2008 8:15 PM (GMT -6)   

Cindy,

Baclofen is used for spasticity.  It is basically a muscle relaxer but it works through the spinal cord and not through the brain. That us supposed to help with the drowsy feeling you get with a lot of muscle relaxers.  You could always try it but it is not typically used for neuropathic stuff. 


Gretchen       co-moderator MS board       diagnosed with MS July 2006

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