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I've been using AVONEX Beta-Interferon for over 3 months and have found that its working :-). I am a 45 yr old male living in Scotland and was diagnosed as having MS in March 2008. Before taking the drug I had a numbness in my fingertips of both my hands.Since taking the drug the numbness has ceased on all my fingers with the exception of my index finger and thumb of my right hand,my left hand is a lot better,no numbness. The side effects I've suffered since using the drug has varied from a flu feeling to sore thighs and on one occassion(spelling?)total wipe out where I could only get around using a walking stick. Fortunately that was a one-off. Is anyone else using Beta-Interferon and if so what have they noticed? Many thanks for reading this. Davie
Hi Davie Ive been using Avonex for 18 months now...like you i noticed my symptoms dissapearing very quickly. The flu like symptoms post injection have nver improved, platets and neutrophils dropped very low last year and I thought I was going to have to change but this seems to have sorted itself out. I also had a couple of weeks of palpatations after injections but this went as quick too. Small price to pay for staying well. However I was very lucky to have moved from the UK to New Zealand before diagnosis..lucky because I was able to attend Georges course in the Yarra Valley...for me this has kept me well, I have folllowed the diet and it has made a huge difference! Stay well and I hope the Avonex keeps working for you Carrie
I was diagnosed with MS in 1991 and have never taken any MS drugs, not even steroids. Instead I follow a low-fat diet, get some sun, take some supplements, avoid infections, avoid heat, exercise regularly and set goals for myself. I am no stranger to little cheating--even so, now, at age 58, I still have no visible symptoms, I walk more than an hour five days a week, lift weights, stay in shape, work full-time, etc. I currently have more problems with arthritis in an ankle I broke a few years ago than I have with MS. As a result of my experience with life style, I am very unimpressed with the interferons and Copaxone. Those I know who take no MS drugs do better than those who do take the drugs. Frankly, I am a bit bothered by the over-selling of these drugs by the pharmaceutical companies. I wonder if they won't be debunked in a few years as creating more problems than they solve. Go Swank! Go Jelinek
What a great post to read Rebecca,thank you. I was diagnosed in 2005 and a year later was able to attend one of Prof Jelinek's MS programs and, like Carrie (hi Carrie, glad to read you are doing well) it was life changing and has kept me well. I have never taken any form of DMD and hope that I will never have to. It is great to read of your experience as it gives fortitude in times when the going gets tough. It took barely a year of following the Jelinek regimen for my symptoms to all but disappear, unfortunately a couple of months ago I went through a couple of weeks of intense stress and they all came flooding back...mind/body connection should never be underestimated...Happily I am back in a better space, the stress is gone and my symptoms are slowly going to.
Hi all,back again.
Unfortunately I've not been to c or hear the doc .
i'm now over a year in2 my Avonex and speaking to others who have been taking it for a considerable amount of time the aymptoms I and Carrie have received are common.
The numbness in my fingers hasnt gone away & have been told that it possibly wont.
Like everyone on Earth we r all different & our bodies react differently to MS.
My friend Diane(whom I was at school with)has a "harder" form of MS.
I have remitting relapsing.
She is unable to have Beta-Interferon as it wont work for her,so she has other pain killing drugs which have helped her immensely,so much so that unhtil recently she was driving a manual(stick shift)car but now has an automatic.
I dont know if other countries have a Mobility scheme like we have in the UK but with the Higher Rate payment we receive we r able to lease a brand new car thru the scheme for 3yrs where the only running cost is fuel.
My late sister had the same form of MS that Diane has & so has my younger cousin,so perhaps its a theme running thru my mums side of the family.
Can anyone shed any light on this?
As New Zealand has a similar climate to Scotland(I've been told)only warmer-wouldnt be hard lol-and countries south of the equator have fewer suffer.is climate a factor?
When i visited Portugal last year for a week,I noticed a gr8 change in my mood swings & general well being,the heat agreed with me.
Has anyone any thoughts on this?
Keep well.
Thanx 4 reading.
Ttfn
Davie
I had my first MS symptoms in 2001 but was not diagnosed until having ON in 2008.I was diagnosed with RRMS in December 2008 and started on Betaferon in March 2009, 14 months ago now. I still have flu symptoms and have to take medication to combat this. Even though this seems to suppress the headaches and aches and pains, I spend most of the day feeling tired and sluggish. I work full time (or try to).
I started following the Jelinek diet and supplement recommendations a month prior to starting injections. I don't have any site reactions, or very few, but I'm fed up with the flu symptoms. I'm thinking of switching to copaxone. Has anyone had experience with this?
Lynette
I switched from Rebif to Copaxone a few months ago because of a low white blood cell count. Not sure why the Interferons are the first line therapy, Copaxone is much easier. Now I can take the shot in the morning (every day) because I don't feel any different afterwards, no premedication, no flu symptoms, etc. Other than pain at the injection site for about 30 minutes after the shot, I haven't had any side effects at all. I do think it takes several months for the drug to be effective, though, up to 6 months. I haven't been on it that long, but just from a day to day living type perspective, I much prefer the Copaxone. Good luck to you!
This is actually the experience of most people who switch therapies. More importantly, the evidence is very strong that switching therapies, if they are not working, or because of side effects, results in better control of the illness. I cover this in some detail in the book Overcoming Multiple Sclerosis (http://overcomingmultiplesclerosis.org/book).
At the time of my diagnosis, my doctor refused to say anything about any of the medications, saying they were all equally effective. I found out through conflict of interest documents required by the FDA, that she recieves funds from several of the drug companies.

I wish I'd found George's book or this website first, but based on my limited reading, I had concluded the interferons were stronger, but since I have abnormal liver enzymes, I opted for Avonex, i.e. the weakest dose of the stronger medecine. The evidence of the strengthening of the blood-brain barrier was also influential. Since I also have sensitive skin and was worried about skin reactions with copaxone.

I get a new mild symptom once per month, i.e. tingling where it didn't before and a little leg weakness for a week. So I think I may have mini exacerbations. It's so difficult to tell what are symptoms and what is new disease activity. The 24 (or is it 48) hour rule isn't useful and my symptoms are too mild to use steroids or interest my doctor.

I'm now in my 3rd month of Avonex and feel pretty good (I'm on the diet, taking suppliments, meditating daily and although not exercising as I did before, I walk 6-8k steps daily and take the stairs). But I wish I knew if the drugs were working or indeed making me worse (as per the new studies which show Interferons work for you or they work against you).

I will review with my new doctor in a few months, but can't see switching to drugs unless there is evidence they're not working, though I wish I'd started with copaxone. But I would say, that the flu symptoms do pass and would be a reasonable price if I knew the medecine worked.
Alex

Diagnosis: Jan 2010, OMS April 2010.
Thankyou George for the link to your book...I have already read both of your books and they are inspirational. I was lucky to catch up with an aquaintance from Fremantle whose ex-girlfriend worked for you and he has been on copaxone and following your diet for 10 years since his diagnosis. He is extremely fit and well and recommended your book as soon as he knew I had MS.

After reading 'Taking Control of MS' and looking at the drug therapies available, I had decided on Copaxone but was quickly influenced by my neurologist...he said that Betaferon would be a better option for me. I did question it but he quoted trials and statistics and was very convincing.

I have read that interferon is a tumour suppressor and since I had bowel cancer and a bowel resection in 2007, I figured that maybe it had come into the equation. My family has a mutation in the HNPCC gene and I was diagnosed with bowel cancer at 50.

I was just wondering if Copaxone, also being an immunomodulatory drug, has the same tumour suppressing qualities. This isn't something I can ask my neuro as he appears to be biased toward the interferons so I'm seeking information and unbiased opinions before making my decision to switch drug therapy.

I must add that other than the flu side effects from Betaferon, I am very well and have just resumed playing squash after a 2 year break due to optic neuritis. I think the diet I follow has a huge bearing on my health.
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