12 posts Page 1 of 2
Hi guys. Please may i have yr thoughts - my head is in i spin.
Have been to see my drug neuro for the first time since dx.
He has given me an edss of one. I have had one relapse. Lesions on spine but not brain. Am feeling really well. OMS last Nov.
He said i only just fit into the criteria of being prescribed a drug but because my mother was so ill with ms he wants to start me on one. Does having a very ill parent make me more likely to follow that path? I thought ms was an individual thing.
He wants me to start on aubagio - i was happy at first on hearing no injections, i thought i could do without the daily reminder of ms.
Reading up, it seems aubagio is pretty toxic. Has he just recommended this because it's fairly new?
He wanted me to start drug with the explanation that the next relapse could put me in a wheelchair and that the spine doesn't heal as well as the brain and could be permanent. This frightened me so much i almost said yes there and then.
In the spirit of do whatever it takes i am not anti drug but really worried about the aubagio side effects.
I am thinking of asking for copaxone as the better alternative, injections be blowed !?
Don't think the neuro is OMS friendly - didn't mention diet or vit d at all. When i mentioned the prof he jury laughed at me. Sorry to waffle on, but any thoughts please? L
Hi Lolly - its a difficult decision that you face. You have three options:

1. Take no DMD and wait to see what following OMS does.
2. Take aubagio on the advice of the neurologist.
3. Take a different DMD that you are more confident in taking.

You are right - MS is individual. Just because you mother has MS does not mean that your MS will follow the same course. Just look at Dr. Jelinek. His MS did not follow the same course as his mother's.

Your neurologist does not have the right to laugh at your decision to follow OMS. OMS works. It takes time but it works. How long have you been following the program? Are you exercising? Meditation /reducing stress? Supplementing with the right amounts of vitamin D, flaxseed oil? These are very important components of the program.

I share your your concern about aubagio...the benefits seem to be marginal compared to the side effects...especially since you say you feel fine right now.

I was recently facing a similar decision. The best thing I did was to take my time to make my decision. My neurologist was not happy with me but it was my decision.

This is your decision. Take time. Do your research. Prepare a list of questions and don't accept "non-answers".

This is an important decision that requires careful consideration. There is no urgency so don't be pressured into making a decision.

Take care,

Claire
Thanks Claire.
I believe i have all aspects of OMS up to scratch except for meditation which i do struggle with a little.
Vit bs are fine, vit d is 195. Plenty of exercise and outdoor activities. Low stress and good rest.
Went OMS last November before dx cos was pretty sure what i had.
I think the list of questions is a good idea. Will walk in well armed next time!
L x
Depending where you are drug choice by neurologists might be monetary driven.
It is your body and your choice I would not be frightened into making a choice that does not feel right for your given situation.
Research as much as you can about what your choices are.
I saw Gavin Giovannoni, a London-based MS specialist, presenting at the MS Life conference. He said that in the past, neuros tended to prescribe the milder MS drugs first then only offer the strong drugs to patients who didn't respond to the mild ones, but these days many neuros will prescribe a strong drug straight away to avoid accumulation of disability. Of course, the stronger drugs also come with the risk of harsher side effects.
Hmm - he actually told me that this was a mild one and we should save the stronger ones for later on. Am starting to get a little worried about this guy. Especially seeing that he said he wouldn't have wanted to prescribe for me if mum hadn't been so ill. Thought he was meant to treat me not my mother. It's a bit confusing but i think will say no to aubagio. Still undecided re other drugs. L
Hi lolly,

I don't know much or anything at all about dmd but my instinct is that I don't like your neuro at all! To be honest, I think it is quite important to have a good relationship with any doctor who is working WITH you. I don't like to be rushed into decisions and also I'm not sure about the whole linking it to your mothers progression plus a scare tactic of telling you your next relapse might leave you in a wheelchair?!! I mean come on? If he is so confident in this particular drug why does he need to use scare tactics rather than point you into the direction of research?
My neuro is quite anti drugs but within Germany where I got diagnosed first (living in the uk though) they are super into drugs too and wanted to put me in straight away! My neuro now really dislikes all the side effects.

Plus I always think that I don't want to take a drug for the next thirty/fourty years that has only been around for five/eight years. If you look a little bit at the history of HIV drugs - the first medications were actually very toxic.

Sorry if I'm not helpful at all but my point of action would be to get a second opinion by a different neurologist - don't know if that is possible though?
Hi mila. I think this is partly why i am struggling with this issue - i don't really trust what he's telling me. Sadly i don't think different neuro will be an option. Am now pondering copaxone for five years to help support my system till the OMS should really kick in, but perhaps i am just trying to rationalise things with that idea. One thing i can say for sure is that i think this neuro is going to be as OMS friendly as a custard filled doughnut! L
Haha at least you can joke a little bit already. Maybe give a shoutout here to find out if anyone is seeing a nice neuro soon and could just real quick ask about that drug? I only see mine once a year in February (knock on wood as I'm relapse free and it's just to show her how well I am :D ).
From all I know you are right about maybe considering copaxone, just google the other drug like crazy! (I might have a go, also on the German sites!) be well and don't let him get you down xx
Hi I am very paranoid what pharmaceutical companies are up to so I found this site quite interesting, showing how this drugs approval matters for the company. There are some more links at the bottom too.

http://www.fiercepharma.com/story/sanof ... 2014-01-22
12 posts Page 1 of 2

Who is online

Users browsing this forum: No registered users and 4 guests