OK, so I'm really lucky, but...

[Manis]

I've been really lucky with my MS. Diagnosed 2008 (sensory symptoms/transverse myelitis), but onset actually around 2000 (optic neuritis). I am incredibly grateful that I have no obvious disability. A bit of fatigue, and ongoing sensory loss, but nothing major. I know I am lucky.

I started copaxone in 2008. No relapses at all, and no progression on MRI. But then again, I had no progression between 2000 and 2008, so ....

I struggle with the copaxone (mainly site reactions/pain and lipoatrophy). I changed to three time weekly injections in 2010, and then twice weekly injections 2011. I am seriously considering going without DMDs, but would welcome the advice of others on this forum.

PS: I am in Australia, so cost is minimal for me, and therefore not a problem.

[NickyOz]

Hi
I have had ms for 10 years. I thought I was lucky too as it was not obvious for 10 years that I had ms. It was mainly sensory. I took avonex for a couple of years and then despite counsultants advice took myself off it.

10 years later had a stressful situation and bang most of my physical abilities went. I am now on tysabri. I realise now that if I had stayed on medication the progression of the lesions would not have got as bad as they got.

It is only now I realise the importance of medication. You can be fine but one more lesion in the wrong place can change everything. When you are relatively OK keep it that way cause you can not undo the damage once it is done.

Out of interest I have lived in Ireland for 12 years and the medication cost me nothing over here. I take around 4000 euro of medication a month, 3000 it cost for the tysabri and 500 for catheters and i don't pay a cent. I am from Aus and was wondering what it is like there. I can't believe how difficult it is for a lot of people in America it is as there seems to be a cost related to everything

[Toomnyhats]

Manis, I am very similar to you -- dx Oct 2008 but I can trace sx back to 1997. No obvious disability. I can disguise or explain away the fatigue, cog-fog, vision issues, etc.

I will have an MRI this summer to check progression but I'll be shocked if they find any.

Currently cost is not an issue for me either (DH has excellent insurance) but with that being said I am staying on my DMD. If I need to change I would like to go on LDN.

I am doing what is within my power to control this MonSter!

[Thinkimjob]

Hello.
These dmds are not a cure. They promise a 30ish% reduction in exacerbations, if you're lucky. That's it, and frankly that's not much.

MS progression is still going to happen.
When the old dmd stops 'working', or you 'have a flare', they put it down to bad luck - that one didn't work for you.

Usually, the effects of progression start making themselves apparent about 10 years in.

We're all so frightened of what can happen, we keep taking our drugs. (I do.)

[Manis]

Thank you for your replies

Thank you for taking the time to reply. It has given me pause to think... The 10 year thing is beginning to weigh on me.

NickyOz, FYI the full cost of copaxone in Oz is about $1100 per month. I pay about $35, as it is on the Pharmaceutical Benefits Scheme for relapsing remitting MS.

[dpmich]

If you are having issues with Copaxone have you seriously considered other dmt? I was on Betaseron for 5 years then had to switch to another because of reactions I was having, I chose Avonex. It's funny, I feel like I'm cheating now. It's only once a week instead of everyother day. (Hubby feels the same way.... lol)

The Avonex sounds scary because it's into the muscle, but it isn't. I have less pain with these and in fact rarely feel anything. I wish I'd have switched sooner. I went through a lot of He _ _ with the other.

Talk with your neuro. They may have some thoughts also on what you should do.

[Citlalli]

Devil's advocate here. I have never taken DMDs though they were offered, and have had RR for around 30 years. Now turning 62 and after a 7-mo. relapse, I suppose there is a possibiity my current symptoms are here to stay (mainly affecting mobility, with a high degree of spasticity and pain). Having weathered about six discrete episodes lasting 2 mos each and then returned to normal, I feel lucky too, in a sense. It seems I'm no worse off than I would have been if I had taken all those shots. No one has a crystal ball, though--and you don't know how your situation is going to evolve until it has evolved.

I believe the big drug companies are making a bundle off our fears, and that a serious MS diet, physical therapy if needed (but only with a neurological specialist) and healthy living can make a huge difference. In fact, after slipping off the diet, I'm planning to get back on (means eliminating red meat and most dairy) in the next few weeks. I also want to start taking LDN again, which I did for 3 years after my last relapse.

I take Baclofen now for spasticity and it helps up to a point.

MS has always confounded doctors. The body really wants to heal and the brain finds new circuits. Maybe age ultimately makes that harder; I'll find out!

That said, if I had other symptoms, diminished vision, for example, I would quickly switch to something stronger. I'm sure many people here would think that's absurd, and that the time to take the big guns is before the bad stuff happens.

Wish you luck. And be glad you live in a country where they actually look after you.

[MarkLavelle]

It's unfortunate that Copaxone isn't working for you, but that's a poor reason to give up DMDs altogether, and I hope that's not what you meant. I'm sure your neuro will have a suggestion or two.

I expect most of us eventually get semi-comfortable with where we are, but I can't imagine passing up a chance to delay the next round of degeneration. I mostly have only sensory issues right now, but I also know that the very next lesion could take away my ability to play guitar, or to walk, or talk or any of dozens of things. There's no way I'm going to pass up the chance to delay that next lesion!

Why should I care who's making money as long as what they are selling works? Each user reacts differently to each DMD, but the statistics say that the majority of us have a DMD available that will really delay the next lesion(s). And there is also (weaker) evidence that they can undo some of the nerve damage. Why would anyone pass on that?

Best of luck,
Mark