14 posts Page 1 of 2
Hi there. Six months ago I was diagnosed with ms. Recently I had another MRI which has showed another active lesion. So whilst this isn't good news it does mean now that a lot of the medication that wasn't available to me before the first MRI now is. I am due to go on medication in February. I have read George's book and I have made some attempt to work out which particular medication would be better.

Can you let me know your thoughts on Capaxone or Avonex.

Also as a side issue my left leg seems odd at times......l sometimes feel I want to limp and almost need to stop myself. It isn't an all day thing but it has been going on now for a few weeks. Is that what is termed an "episode"?

Thanks so much.
George chose Copaxone for himself for 12 years. My reading of his book leads me to believe he believes it a safer and better proven medication, but that in general he has limited faith in either.

As an Avonex user myself, I can tell you that the one shot is very very difficult and the flu-like symptoms were terrible for the first year. I woudln't worry about the needle part - it sounds terrible, but the copaxone needle is tiny and the avonex needle is like a 3 penny nail. No, really.

On the plus side, at least in the trials, Avonex has been shown to delay disability, whereas copaxone hasn't. But this is also a point of contention, as there are studies which show neither slows progression.

confused? Wait for others to reply and sort through the answers.
Alex

Diagnosis: Jan 2010, OMS April 2010.
Thanks Alex for your response. It is hard to know what to do and it is different for everyone. I do feel it is necessary to go on medication given I have a young family.....but which one!
From my experience... I took Avonex for 3 years (starting in 2006), and during that period of time I had no new lesions.
I stopped the treatment because my doctor said my case was very stable. Well, 2 months ago a new MRI showed 1 more lesion in my brain. So, I am going back to Avonex. I like the fact that I just take once a week. The side effects (as the flu symptoms) get better with time.
I also know a woman who takes Avonex for over 10 years now. She just had one small lesion since then. And doesnt show any symptom. Btw - she goes and comes back from work walking.

Well, but it is valid to mention that I believe that the OMS recovery proggram is even more efective than any drug. I just knew about it 2 months ago, and since then I am following it and feeling better everyday.

About the drug, talk to your doctor, and try to find what s the best option for you. And once u start on that, really believe you are doing the right thing!

Well, that is what I know from my own experience. Hope to have helped you. ;)

Love,

Zuza
If I was you, I'd go with Copaxone. I've been on it for a month now, and have had zero side effects. I guess it would come down to whether or not you'd have a problem with a daily shot. BTW, the horror stories you read out there about Copaxone are because people have no clue how to properly inject themselves. I come from a family of medical people, so it hasn't been a big deal at all for me.
One really important thing to consider is the actual mechanism of the different drugs. You need to understand how these things work at a molecular level so that you don't take bad advice from well-meaning people. Avonex is an immunosupressant drug. This means your immune system will be weakened while on the med. Avonex will slow your MS, but at what cost? You're going to get sick more often, and your risk of cancer will increase. Most importantly, the OMS program is one that strengthens the immune system by making it have more of an anti- inflammatory aspect. Copaxone has been shown to do the same thing, so in theory it should work with the OMS recovery program, and not against it. If you decide to go with Copaxone, let me know and I can give you some tips to help make your injections super easy and virtually reaction free.

-Josh
The big problem with the interferons such as Avonex is that they make about 1/3 of those who take them worse off. Also, those who have a worsening of symptoms because of the interferons may never recover from this worsening of symptoms. So, I suggest trying Copaxone first. The interferons are quite risky.

Rebecca
Josh,

Although I agree that copaxone is a better and probably safer first choice, to set the record straight , Avonex is not an immunosupressant - it is an immunomodulator. I had wondered if I was less protected against cancer or the flu and have asked more than one doctor about this. I have searched for information as well. While we may never know the full effects of any drug we take, Interferon is not a new medicine. There is a long enough history to know what the side effects are. From what I understand, there has been no observed increase in cancer or even the flu. This remains to be seen with the new MS drugs.

I would recommend anyone start with Copaxone to see if it works for them. Though people may be put off by the idea of daily injections, the lack of side effects makes it an excellent first choice.

.Alex.
Alex

Diagnosis: Jan 2010, OMS April 2010.
On topic of Medication - I'm still really not sure what to do - Although gut says ride the diet & lifestyle for now.

I had optic neuritis 3 years ago, i have minor symptoms now, tingles in hands - feet sometimes, get light headed rushes a bit, balance a bit off sometimes but it doesn't put me on the ground or anything - just not as good as it once was & my right eye has never completely recovered from optic neuritis distance perception a little out & colour faded. I've also had anxiety fairly severely for the last 3 years although more accelerated the last 12 months or so. I still think the stress & anxiety is what has brought my MS out but anyway who knows. On a positive note though my GP has found me a psycologist - so basicaly i've weened off my anxiety meds & the Psychologist is going to treat me as if my MS doesn't exist (he is a member of the MS society) so basically at the end of the treatment we will have what is MS & what is not MS as many if not all of my symptoms fit both MS & Anxiety & both the Psychologist & the Neurologist think they are right & can claim them :lol:

Long & the short brain has 2 small legions in my December MRI - same as it had in 2009 with Optic Neuritis so no change there however later in December I had the first MRI on my spine & I still don't know what that image looks like with the Neorlogist now overseas & next appointment not until April. Based soley on the brain MRI & clinical examination Neurologist suggested Tsybari as his preffered treatment for me his reasons summarised where basically - i'm young (31) fairly early diagnoses although he was very frustrated that they bungled my paperwork & request after Optic Neuritis leaving me to wait over 2 years when that should never of happened - anyway he thinks Tsybari for 1 year. I'm really not that sure about it though - kind of freaks me out actually. My MS nurse is great & understands the role diet can play although she still thinks i should be considering medication & her suggestion was Capaxone as opposed to Tsybari but aslong as i manage it correctly and reasses as things change she thinks my choice for now is good.

I've still got a while to think before my next Neurologist appointment - still think for now i play it as it comes follow the diet/lifestyle any relapses or worsening of current symptons & I'll reassess my position. Thoughts ? ? ?
Tango,

it's an interesting question. I believe the theory goes like this: Instead of using the stronger meds only after it's too late, let's hit the disease early before damage happens, thereby putting the patient in better shape for the long run.

The only problem with this is, that Tysabri is not really a long-term drug. Around the 5year mark, if you haven't experienced PML already, you and you doctor are going to become very nervous about it and want you to stop for a while. After that, the question becomes; what of the rebound effect, where people stand a stronger chance of relapse after stopping? And are you calming the disease or just putting it on pause for a few years?

You'll want to read this post by the Professor on that very subject and then discuss with your doctor.

http://www.overcomingmultiplesclerosis. ... tivity%3F/

Without knowing your exact situation, I would definitely try Copaxone and diet first.

Almost more importantly, you should start dealing with your anxiety by meditating. I am not heat sensitive, but I'm definately stress sensitive and my exacerbations came at times of great stress.

Meditation not about sitting and chanting, waiting to feel peaceful. It's not about "emptying" your mind either (though that can be a pleasant thought). It is about observing your thoughts and feelings, rather than living in them. It's like viewing a car race while standing on the racetrack, vs in the stands. It really works and has done wonders for my anxiety. You can do it in addition to your psychotherapy as well. It really really works. You have to do it for 8 weeks straight to start. Also, get a guided meditation recording. Go to your local library and check out a few.

Good Luck,

.Alex.
Alex

Diagnosis: Jan 2010, OMS April 2010.
Hey Alex,

From the U.S. National MS Society...

"Avonex can cause a reduction in levels of infection-fighting blood cells, red blood cells, or cells that help to form blood clots. Severe changes of this kind can lessen a person’s ability to fight infections and cause tiredness. Periodic blood tests can identify changes in levels of these important types of cells."

and a reliably cited quote from Wikipedia...

"When used in the systemic therapy, IFNs (interferons) are mostly administered by an intramuscular injection. The injection of IFNs in the muscle, in the vein, or under skin is generally well tolerated. The most frequent adverse effects are flu-like symptoms: increased body temperature, feeling ill, fatigue, headache, muscle pain, convulsion, dizziness, hair thinning, and depression. Erythema, pain and hardness on the spot of injection are also frequently observed. IFN therapy causes immunosuppression, in particular through neutropenia and can result in some infections manifesting in unusual ways.[29]"

You're correct that Avonex's official usage is that of an immunomodulator. If you read about how interferons work, you'll see that they work by warning nearby cells of a threat so that those nearby effectively close down their cell membrane's to prevent pathogens from entering. Since this would prevent the need for white blood cell involvement (inflammation), the idea is that the myelin cells would be protected. In this aspect, it is suppressing the immune system. This is a treatment that is very typical of Western medicine in approach. Let's spend all our time figuring out how to allow people to breathe smoke instead of putting out the fire. I'd also like to point out that one of Avonex's main talking points- that of strengthening the blood-brain barrier, has only been observed in vitro, never in real-life.

Look- Dr. J is obviously on to something here. I feel amazingly fortunate that we have someone with his mind and resources on our team. As a licensed physician, he can't ethically tell anyone what to do in terms of medication without first examining them because all the medications involved have the potential to harm the individual in some way (side effects). The suggestions he gives for his recovery plan have been proven academically to be beneficial, and most importantly, to not harm anyone. The medicine decision has to be left up to the patient and their doctor- although Dr. J all but spells out his own opinion in his book.

I don't know about the rest of you, but the research that backs Dr. J's suggestions is proof enough for me. I'm not just hoping his recovery plan will work, I'm betting my life on it.

Josh
14 posts Page 1 of 2

Who is online

Users browsing this forum: No registered users and 1 guest