Have a choice to make. Need Advice

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Have a choice to make. Need Advice

Postby donsteitz » Sat Mar 09, 2013 6:54 pm

Hello everyone.

We were given a choice to make on 2 different therapies for my son who was recently diagnosed, those being:

-avonex; once a week dosage...or
-rebif; thrice a week

Thoughts, recommendations, advice, experience?

Thanks!
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Re: Have a choice to make. Need Advice

Postby lyndacarol » Sat Mar 09, 2013 7:15 pm

Don – I am not qualified to give a recommendation on medications. I can only share my experience: I used Avonex for over seven years – I saw no improvement during that time. I had used Betaseron, the first interferon approved for MS, in the three years before Avonex. I used Copaxone for about six months, also with no improvement.

For me, these three drugs were of no benefit. Only the drug companies benefited from the hefty sums of money paid by my insurance company! I now choose to do without these injectables; I have never liked needles anyway. Effectiveness of the drugs is no better than placebo; there is no proof that I know of that the drugs improve the natural outcome of MS. It is my opinion that NO successful treatment will be available until the CAUSE of MS is discovered!

It is an individual decision for everyone, after studying the choices.
My hypothesis: excess insulin (hyperinsulinemia) plays a major role in MS, as developed in my initial post: http://www.thisisms.com/forum/general-discussion-f1/topic1878.html "Insulin – Could This Be the Key?"
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Re: Have a choice to make. Need Advice

Postby donsteitz » Sat Mar 09, 2013 7:22 pm

lyndacarol wrote:Don – I am not qualified to give a recommendation on medications. I can only share my experience: I used Avonex for over seven years – I saw no improvement during that time. I had used Betaseron, the first interferon approved for MS, in the three years before Avonex. I used Copaxone for about six months, also with no improvement.

For me, these three drugs were of no benefit. Only the drug companies benefited from the hefty sums of money paid by my insurance company! I now choose to do without these injectables; I have never liked needles anyway. Effectiveness of the drugs is no better than placebo; there is no proof that I know of that the drugs improve the natural outcome of MS. It is my opinion that NO successful treatment will be available until the CAUSE of MS is discovered!

It is an individual decision for everyone, after studying the choices.


Sounds like you have some experience. Did your symptoms get worse during this period? I know you said there was no improvement, but we are more concerned with things turning worse as opposed to things getting better in lieu of there not being a cure. Thanks.
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Re: Have a choice to make. Need Advice

Postby CaliReader » Sat Mar 09, 2013 8:03 pm

Unlike LindaCarol, I am in my first year on this forum.

I am about to start Avonex, in addition to the wide variety of supplements and dietary changes that I am already using to try to slow down this disease.

None of these drugs claims to prevent the disease from getting worse. The best they offer is a chance that they slow the process down from what it would have done otherwise. Also, if you are on one, then you are within the medical establishment's protocol for assessing whether the usual treatment works for you. If it doesn't there are other therapies... with their own risks.

The MS Research Blog, which is from a London research hospital's neurology professor would give you a pro drug perspective.

The specific drug forums for Avonex or Rebif on here on THISISMS would give you a patient side perspective, some pro, some anti drug. At best these drugs are not a cure.

My suggestion for whatever it is worth would be to try everything that seems reasonable to you.

MS is wildly variable. This forum is a great resource, compiling patient experiences of every kind of treatment.

Re which injectable, you might ask your son whether frequency of injections or size of needle are more important to him. Also, Avonex is least likely to produce neutralizing antibodies.

Good luck.
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Re: Have a choice to make. Need Advice

Postby lyndacarol » Sat Mar 09, 2013 8:28 pm

donsteitz wrote:
lyndacarol wrote:Don – I am not qualified to give a recommendation on medications. I can only share my experience: I used Avonex for over seven years – I saw no improvement during that time. I had used Betaseron, the first interferon approved for MS, in the three years before Avonex. I used Copaxone for about six months, also with no improvement.

For me, these three drugs were of no benefit. Only the drug companies benefited from the hefty sums of money paid by my insurance company! I now choose to do without these injectables; I have never liked needles anyway. Effectiveness of the drugs is no better than placebo; there is no proof that I know of that the drugs improve the natural outcome of MS. It is my opinion that NO successful treatment will be available until the CAUSE of MS is discovered!

It is an individual decision for everyone, after studying the choices.


Sounds like you have some experience. Did your symptoms get worse during this period? I know you said there was no improvement, but we are more concerned with things turning worse as opposed to things getting better in lieu of there not being a cure. Thanks.

Slow, steady worsening of symptoms while on the injectables.
My hypothesis: excess insulin (hyperinsulinemia) plays a major role in MS, as developed in my initial post: http://www.thisisms.com/forum/general-discussion-f1/topic1878.html "Insulin – Could This Be the Key?"
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Re: Have a choice to make. Need Advice

Postby jimmylegs » Sat Mar 09, 2013 8:31 pm

i am afraid i will not be of much use deciding which drug - i was originally set up on the rebif track but before i started, i read enough and talked to enough people that i decided to opt out of the drug route entirely..
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Re: Have a choice to make. Need Advice

Postby donsteitz » Sat Mar 09, 2013 10:15 pm

CaliReader wrote:None of these drugs claims to prevent the disease from getting worse. The best they offer is a chance that they slow the process down from what it would have done otherwise.


Right! Good call on that. I did want to say that. Just being too optimistic I spose...so in lieu of that has anyone noticed a slow down of their symptoms or a longer lapse period between any episodes? Thanks for the Reply!
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Re: Have a choice to make. Need Advice

Postby HappyPoet » Sat Mar 09, 2013 11:17 pm

Avonex has been shown to reduce brain atrophy and benefit cognition. I don't know about Rebif.

Best wishes.
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Re: Have a choice to make. Need Advice

Postby civickiller » Sun Mar 10, 2013 2:07 pm

Avonex and Rebif are both Interferon-1a which means theyre the same drug just in a different dose

While on Avonex and Betaseron I developed an uncountable amount of lesions but while on nothing but fruit and vegetables ive only developed 2 lesionsl. I dont want to conclude that fruit and vegetables will prevent lesions just pointing out my experience.

Has your son ever had any head/neck trauma/injury ?

Hows his jaw motion opening and closing?
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Re: Have a choice to make. Need Advice

Postby donsteitz » Wed Mar 13, 2013 10:52 pm

civickiller wrote:Avonex and Rebif are both Interferon-1a which means theyre the same drug just in a different dose

While on Avonex and Betaseron I developed an uncountable amount of lesions but while on nothing but fruit and vegetables ive only developed 2 lesionsl. I dont want to conclude that fruit and vegetables will prevent lesions just pointing out my experience.

Has your son ever had any head/neck trauma/injury ?

Hows his jaw motion opening and closing?


Thanks for the reply. He had a silent stroke awhile some time back we discovered after an MRI to check his head in a recent automobile accident. That is how we found out. First they thought it would just be the stroke but the spinal tap came back pos for MS. He says no problems with jaw, opening and closing.
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Re: Have a choice to make. Need Advice

Postby NHE » Thu Mar 14, 2013 2:15 am

donsteitz wrote:Thanks for the reply. He had a silent stroke awhile some time back we discovered after an MRI to check his head in a recent automobile accident. That is how we found out. First they thought it would just be the stroke but the spinal tap came back pos for MS. He says no problems with jaw, opening and closing.


Somewhere in daze gone by there was a post about stroke also causing oligoclonal banding in CSF. As such, to the best info I have at the time, the spinal tap is not a definitive test for MS, but instead provides evidence that's consistent with an MS diagnosis.

It might have been one of Cheerleader's posts, just not sure right now...
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Re: Have a choice to make. Need Advice

Postby want2bike » Thu Mar 14, 2013 12:25 pm

Studies do say the drugs may be a temporary relief of symptoms but do not slow down the progression of MS. There was a study done in England showing patients doing the drugs did worse. You might want to look at the diet section. The paleo diet has shown success in treating MS.

http://www.nytimes.com/2012/07/18/healt ... html?_r=3&

http://www.youtube.com/watch?v=GJyQTTZr ... _embedded#!

http://www.youtube.com/watch?v=zGmyUppmt-g
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Re: Have a choice to make. Need Advice

Postby CaliReader » Thu Mar 14, 2013 2:42 pm

That is a strange way to get a diagnosis. It can take years of seeing doctors before they are certain it is MS.

Did the doctors do blood tests to rule out other diseases? Was he seen by a good neurologist?

Does your son have symptoms consistent with MS?

Did he have an MRI of his spine, showing lesions there too? Did he have lesions that enhance with the Gadolinium dye?

These drugs are huge lifestyle change and come with significant side effects. If your son does not have MS, then he does not want to take them!
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Re: Have a choice to make. Need Advice

Postby whyRwehere » Tue Mar 19, 2013 1:45 am

I would like to add that my husband was on Avonex for 1.5 yrs and Copaxone for a year or less, can't remember. Avonex= terrible side effects, horrible deep injection, and did nothing. He quickly had allergic reactions to the Copaxone, which also did nothing. He did not have rrms.
Following the best bet diet, learning about ccsvi, Ldn, chiropractic care (especially since he had an accident) would do you a lot more good. We feel the drugs were just expensive poison, considering they didn't help and only harmed my husband...he felt worse on them.
But, since "MS" is so different in different people, each to their own, I just wanted you to know that there are safer things to try first, which might help a lot more...
Why.
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Re: Have a choice to make. Need Advice

Postby Scott1 » Tue Mar 19, 2013 3:35 am

Hi,

I was given the same choice as your son many years ago. It's an offer of once a week or three times a week by someone who has never tried doing it personally. If you have a sense of humour ask the person who gave you the choice to self inject with sterile water and tell you which way is preferable.
The interferon path I presume has been put forward in good faith but I doubt the understanding about what it entails will match the desire to help.
Many of us have tried different things. Sometimes interferon is a breeze but often it results in quite strong reactions. It varies from person to person. If your son is generally run down and "sickly" he might find the full whack of Avonex may be too hard to manage. The rebif is just smaller doses more frequently. It can also be hard to take after a while as it begins to take effect.
I was uncomfortable with 3 times a week because I didn't trust myself to keep backing up every few days so I went for the weekly injection. It was a very hard injection to manage for the first 5 or so years but I did it and then gradually by modifying my whole regime and learning a lot more about what I was doing I learned to make it very manageable. I continued this process for over ten years and have now gone without an injection for 5 months. In its defence, I believe the Avonex helped but it is not an answer on its own. There are a lot of ideas on this forum and they vary from very useful to completely wacko.
All I can suggest is start somewhere, try and remain objective, recognise that most of the ideas on this forum have a basis in reasoned thought and lastly never ever give up.
Although your son is now unwell, it took him a long time to get that way. It will take him a long time to get better but quite a few of us have managed to find a way out by different methods.

Good luck
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