Treatment options and how did your doctor explain

New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

MelstopMS
New Member


Date Joined Nov 2008
Total Posts : 2
   Posted 11/14/2008 8:46 PM (GMT -6)   
I have a question for those on treatment. I have been diagnosed with MS for three years.  He started me on Copaxone. He told me it was the easiest to tolerate and better to manage with my hectic schedule. I had brain and spinal lesions at initial. I took Copaxone for a year and a half. Started to get indentions called Lipoatrophy. He nevertold me this was a possible side effect. When I brought it to his attention he told me to just use another site. As I researched, I found out that if you get Lipoatrophy, it is permanent and you lose an injection site. I went to a program and the speaker informed me if you lose too many of these, you cannot go on another sc injection. You would have to go to Avonex or now Tysabri. He also did not tell me that Copaxone does not have an indication to reduce disability. I got upset about this,because the marketing tools do not give any in depth information on Lipoatrophy and they make you believe the drug is delaying disability. My doctor did not like Avonex and said fewer docs were going with it because the Higher dose interferons had better efficacy. He made me terrified of the flu like symptoms,but I changed to Rebif. I have been on Rebif for almost two years. I stopped having flu symptoms and only have to inject three times a week vs seven! Plus,no hardening in body!! I have never posted, but how many of you feel like I do, that the doctors in the MS field either like interferons or copaxone and they either go highdose or low,and they do not give the full picture of each drug, it is just the one they like.... I also dont trust companies who do not disclose side effects. The shared solution nurse even told me the lipoatrophy may not be due to copaxone... Really? Sorry for the long post, but even after being on Rebif  for awhile, I still get very ticked off at doctors who do not do their homework and really understand the overall effects of all the drugs. 

Sunnycitrus
Regular Member


Date Joined Apr 2007
Total Posts : 334
   Posted 11/15/2008 2:44 PM (GMT -6)   

Hi Mel, and welcome to the board! I’m glad you’ve found a med that you are able to tolerate better. :-)   From reading and talking to people, it seems like some neuros have definite progression med preferences, and some leave it up to the patient. I was on Copaxone for around 9 months. My former neuro chose this med for me, as he thought I would tolerate it the best with my med sensitivities. I think he made the right decision, in this case. However, we are all so individual, and respond to meds differently. I think this is one of the reasons why it is not all that uncommon to start on one med and then need to switch to another, whether due to side effects or continued aggressive progression.

Sunny


Heather H.
Veteran Member


Date Joined Mar 2005
Total Posts : 756
   Posted 11/18/2008 7:09 PM (GMT -6)   
Mel,

My neuro gave me the choice, but highly recommeded Betaseron as I tend to build a tolerance for meds super fast. It only took about 3 weeks before I didn't have any side effects from the injections. The bad part was that I also built a tolerance for all the other meds I was taking for symptom control. Unfortunatly my neuro had to close up shop due to health problems of his own. But before I made the choice to go with what he was suggesting he gave me about 2 weeks to decide and a mountian of information to read through. My neuro was amazing as he had patients on multiple different meds and didn't pressure anyone to choose what he wanted over what they wanted.

Heather
Love many, trust few, always paddle your own canoe!
 
dx's:  Fibro, 8th cranial nerve inflamation, MS.
 
meds.:  none at this time
 
 


Meche
Regular Member


Date Joined Nov 2008
Total Posts : 41
   Posted 11/20/2008 4:43 AM (GMT -6)   

Hi Mel,

I too am on Rebif, 3 injections a week. at my intial consultation the MS nurse went through different beta interferons with me and I picked the best one for me.  I have only been on the injections 6mths, but have found they have helped me dramatically.

I was given a DVD and information pack from REBIF on how to inject, the side effects I could have (this was also discussed with me through the MS nurse).  If you would like information on the REBIF, I can certainly email you things from the book, I was also given a book called my mummy has MS, which helped me tell the kids.  I have been really lucky in the sense that everyone in the MS field has helped me and given me choices and gave me in depth info, I go to MS clinic every 3 months to get my blood checked and again they review me, I also have the opportunity to ask any questions about things I am not really sure about.

I know how you feel with just being palmed off as before I was diagnosed it was a vicious circle of Docs telling me I had an ear infection and take this and take that or it was all in my head.

I still have side effects and the day after my injection I do feel like I have went 10 rounds with Mike Tyson, but it is easing off.

Take care and speak soon

Meche

x

 
Meche xx

New Topic Post Reply Printable Version
Forum Information
Currently it is Thursday, August 24, 2017 2:57 AM (GMT -6)
There are a total of 2,859,239 posts in 313,745 threads.
View Active Threads


Who's Online
This forum has 155328 registered members. Please welcome our newest member, Arwind.
475 Guest(s), 1 Registered Member(s) are currently online.  Details
Resurrection


Follow HealingWell.com on Facebook  Follow HealingWell.com on Twitter  Follow HealingWell.com on Pinterest
Advertisement
Advertisement

©1996-2017 HealingWell.com LLC  All rights reserved.

Advertise | Privacy Policy & Disclaimer