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Need some advice on DMDs

PostPosted: Fri Jul 18, 2014 1:16 pm
by Maxie
As I am not yet on any disease modifying drug my neurologist is very keen and pushing for me to start something possible copaxone or rebif. I have spent many hours reading up on all the pros and cons plus peoples comments on their reactions.

This has been really helpful but the one thing I don't understand is - if these drugs mainly lower ones immune activity leaving one wide open to other infections which may in turn trigger a relapse- it doesn't seem to make sense. I certainly don't want to be living on antibiotics.

Sorry if ~I have missed the point, I would love to hear from anyone with an explanation.

I do have quite a nice neurologist and she does listen to what I say. But somehow I get the impression that she just quotes drug companies literature !

I am on a really good diet (99% OMS) and also on LDN with many supplements plus meditation, but am thinking that maybe I should go on an injectable just in case - this is so hard.



Re: Need some advice on DMDs

PostPosted: Fri Jul 18, 2014 2:22 pm
by Susiesue
I have been taking the new oral drug Gilenya for 2 years now. I was told to avoid contact with too many people as I would have practically no immunity to anything. This proves impossible as I have three retail shops in which I work full time!
Anyway, I have had no relapses since starting (I was having one or two a year requiring hospitalisation) no illness, not even a sniffle! I have also been on the OMS diet for the last year or so and am starting to feel I'm getting my life back.
All the best,

Re: Need some advice on DMDs

PostPosted: Fri Jul 18, 2014 3:37 pm
by veg
Maxie what has you disease activity been like, not to share but for you to think about in relation to drug taking as it is another dimension to consider..

Re: Need some advice on DMDs

PostPosted: Fri Jul 18, 2014 9:42 pm
by Maxie
Thanks Veg & Susiesue.

Well without going into detail I wouldn't say my ms is stabilised. My last relapse was almost a year ago and has left me with balance issues. That is the reason I am now considering a DMD as it may too risky not to.

I just thought that suppressing the immune system in the long term was not a good thing . However I note that Copaxone is an immune modulator so maybe that would be the best one to try first.

I am just finding it so hard to make the decision . Also it appears that I have to wait months to get this prescribed so I hope I don't change my mind while I wait!


Re: Need some advice on DMDs

PostPosted: Sat Jul 19, 2014 3:55 am
by Roseie
Hi Maxie,
I was diagnosed 18mths ago and went onto Rebif (its an injectable 3xweek) I too was told about the lowering of the immune system but to be honest I have not any infections and been healthier than ever. I have a houseful of teenagers whom have had the colds,gastro etc during this time and yet I still haven't caught anything. Hope this post is not going to jinks me!! I also went OMS 12mths ago which I do beleive helps keep us as healthy as possible. Hope this helps you with your decision making.

Re: Need some advice on DMDs

PostPosted: Sat Jul 19, 2014 7:27 am
by Maxie
Thanks for your really helpful advice. It is good to know that infections are not the norm, maybe the fact that the OMS diet is keeping our bodies ultra healthy is protecting us in some way.

I will keep you posted on what happens but in the meantime I just have to wait for an appointment. Perhaps it because I am in the UK and the NHS moves at a snails pace and/or they haven't got the funds. I am being told by my consultant that I must be on treatment but hear I am months later still no further on !

Re: Need some advice on DMDs

PostPosted: Sat Jul 19, 2014 8:29 am
Hi Maxie

I began Copaxone in February and have suffered no side effects thus far. My Neuro cheerfully told me, 'if it doesn't work, we can put you on something stronger, though that will suppress your immune system and leave you open to more infection. We'll tackle that with more drugs'. Er... no thanks!

I truly believe that OMS is our best defence. I do not seem to pick up any of the colds/tummy bugs the rest of my family do. I decided to go on Copaxone as a safety net until I have completely stabilised on OMS (been following for 15 months now). I suffered my biggest relapse shortly before I found OMS (affected walking/balance), and then had a second relapse shortly after, so I felt that starting the drugs as well was a sensible option - 'do whatever it takes'.

In the UK it seems that there are 'old school' Neuros (mine) who like to 'wait and see' before starting DMDs and others who want to get patients on DMDs before the damamage is done. With hindsight, I wish I had started DMDs sooner as it may have prevented the mobility issues I now have.

Good luck with whatever you decide.


Re: Need some advice on DMDs

PostPosted: Sat Jul 19, 2014 7:55 pm
by veg
You could look at it another way had you started on drugs earlier you may have been complacent and not therefore found OMS and the advantages this gives you now :-)

Re: Need some advice on DMDs

PostPosted: Sun Jul 20, 2014 9:44 am
Haha - that is very true, Veg! :D

Re: Need some advice on DMDs

PostPosted: Mon Oct 27, 2014 3:24 pm
by Alex

Did you ever decide? I wanted to point out some things.

Copaxone does not alter your immune system, except as it relates to MS. It is the most benign of all the medications. It is an excellent first choice if you decide to take a dmd. It's the drug dr Jelinek took for years. It is considered as effective as Rebif and you will not pick up diseases more easily.

Rebif is an immunomodulator, not an immunosupressant, though it must be a technical difference. To my understanding, there is no increased cancer, but you can get sick more easily.

The side effects are considerable with interferons, so if you are going to take a first line dmd, I world recommend copaxone. Read the chapter about it in the book or here on the site; it's an amazing story.

Good luck.