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I know this question keeps coming up but thought I would ask for some advice about Avonex.

I am a 43 year old male, Optic Neuritis in June 2009 that cleared after a few months. November 2010 developed numbness and stiffness in both legs,feet, MS hug, Lhermites and muscle twitching, few months ago developed mild numbness in hands. I was diagnosed in March 2011 and been on diet etc etc ever since. Still able bodied, exercising (jogging/weights/stretching) and working full time. Although the symptoms have not improved greatly they have not got any worse.

The Neuro initially said I did not fit the requirements (EDSS) for medication, however, last week I was offered Avonex through the 'compassionate Avonex programme’ here in NZ.

I have tried to read as much as possible about this drug..........most of which does not feel me with hope but interested to know other peoples experiences (although I appreciate we all react differently) when taking Avonex.
I also am tempted to say no and stick with the OMS approach only and see how that works for me, or would I be saying no to an opportunity for a disease modifying drug as well as the OMS method??

Would appreciate any thoughts.

Matt
I've been on Avonex for a year now. It's the 'mildest' drug out of the interferons. Of course it goes without saying that no one likes to inject drugs in the body without a just cause. I decided in favour of the drug in an attempt to stabilise the illness earlier on. From my readings the first five years are critical for disease activity. Having said this doctors are carrying blood tests and checking my liver constantly to ensure minimal damage. However as you may be aware there are disadvantages/side-effects with all drugs. And Avonex is only effective in a third of cases. I'm not sorry for taking the drug. However I keep on top of routine health checks and do all possible to take care of my health. Hope this helps.
Emma,

I'm a male and around the same age and circumstances. Consider yourself in the fortunate group to start out with ON. That's a good sign. I'm on the diet, exercise and take my weekly Avonex shot for the same reasons. I wanted copaxone, but I have no drug coverage on my insurance, so I'm getting it through the Avonex people directly at zero cost.

I could have chosen Rebif, as they have a compassionate program as well, but decided on the lower dosage of Interferon like Salif. Bear in mind, that though smaller, the once-weekly dose is harder. You can read some of my posts about it, but there is some suffering. That said, I took my shot yesterday, went to work and the gym and had a great day today - so it is possible.

As for taking such a much-maligned drug - a doctor admire says in her experience, it makes a difference on MRIs and that she reads that as limiting destruction. She showed me a picture of two EDSS 1 patients, one with few and one with many lesions. That can be read 2 ways. One, that lesion load is not as significant as we think, or (her reading), that the person with all the lesions was in for trouble later.

Though there seems to be a bias against them, I've decided to err on the side of caution by doing *everything* I can. I don't remember where, but the professor says as much, that we should do all we can.

If you're still on the fence, an MRI might show whether you need it or not.

That's my advice. If you choose to get it (and you can stop any time), I can give you all the good advice.

PS, I have almost the exact symptoms. Stiffness, slight numbness in the hands, l'hermittes (comes and goes).
Alex

Diagnosis: Jan 2010, OMS April 2010.
I found the link:

http://www.overcomingmultiplesclerosis. ... ntId=20084

Now he specifically omits Interferon and you seem to be in the "wait and see" group. That said, the theme is "do whatever it takes"

Some days I genuinely regret taking such strong drugs and other times, I wonder if they've helped and in any case how worried I'd feel if I weren't.

You'll figure it out whichever way you want.

BTW, I had ON which cleared as my first sign as well, though it was ignored by my doctor and ophthalmologist when I complained that my vision was dim in one eye.

3 years later, I'm left with the same symptoms.

BTW, stretching for my hand helps with the tingling. I don't know why, but it helps a lot.
Alex

Diagnosis: Jan 2010, OMS April 2010.
I've always felt that symptomless lesions may limit our capacity for recovery. Neuroplasticity works by re-routing signals along different nerve pathways, so having a supply of "spare" undamaged nerves is necessary for this healing mechanism to be effective.
Thank you Alex/ Salif for your responses......its appreciated and helpful.

I have been doing some research and feel at this stage I can not afford to say no (even though there are potentially many issues with it that do bother me) , as you say we have to do everything we can. I will give it a go and see what happens if it does not work for me then I will come off it.

I am interested in any advice you or anyone can give around taking Avonex, as I was considering injecting on a Friday evening hoping I may surface at some point on Saturday??

Thanks again

Matt (not Emma.....she is my wife and kindly registered on my behalf)
I would take my first shot in the daytime so you know what to expect. Talk to your doctor about titrating the first few doses. A full dose at the beginning can be difficult. One clinic advises 1/4, 1/4, 1/2, 1/2, 1.. something like that to get you used to it.

If you can sleep through it, you're golden. I find that getting the shot on a Friday morning is best. I have a headache in the evening but then it's gone. I took a long time to get used to it; you may be quicker.

Oh, and I ice up the area before injecting. The needles that come with it are for everyone, but if you're not heavy, you can use a thinner/smaller needle. I like to take ibuprofen. They say to take it beforehand, but I just wait until I feel bad, which is hours after injection.

Good luck. You'll figure it out. It sucks, but hopefully helps.
Alex

Diagnosis: Jan 2010, OMS April 2010.
Matt,

I figured you weren't emma, but what do I konw?:)

How was it?

Alex
Alex

Diagnosis: Jan 2010, OMS April 2010.
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