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Posted: Thu Jun 26, 2008 8:39 pm Post subject: Why would you NOT take meds?
Hi Guys,
From reading posts on other ms forums i get the impression that lots of people who are doing well with their ms choose not to take any of the ms meds and some say that they will wait until they "need" them.
I am taking Avonex and i'm well too, i have no symptoms and have only had one sensory flare.
I was under the impression that these meds are designed to be taken early in the hope that it MAY delay progression, not start taking it when you have problems galore.
Of course i realise that these meds are not the holy grail and may not be effective in some people.
I have often read that some neuros also say wait and see, we'll do nothing because you are doing so well
Have i missed something? Should i not have taken the Avonex so early?
I certainly don't want to wait until more damage is done to try and halt progression.
If ms is a progressive disease and it's always quietly progressing even when it seems that we are doing great...then are we ever really doing great if it's always progressing? Or does ms not progress in absolutely everyone?
Sorry about all the questions but i would rather not take Avonex if i could avoid it but i thought now was the perfect time to be on it, kind of like cheap insurance
Joined: Sep 12, 2006 Posts: 874 Location: Dayton, Ohio USA
Posted: Fri Jun 27, 2008 4:47 am Post subject:
I think if you are not progressing and the Avonex isn't making you feel like complete hell, then you are absolutely correct to keep taking it. You got that part right in terms of that being the philosophy behind early treatment. But some people can't tolerate it very well and it also messes with your immune system and some people don't want to do that and instead choose some sort of alternative route. But to answer your main question, you aren't missing anything, but also keep in mind that it isn't tolerated well by everyone and some people keep right on progressing even when taking it. It sound like you don't get the nasty side effects. I'd probably still be on it if it weren't for that. Mine got worse over time and Avonex messed with my mood something fierce. _________________ "When you're in jail, a good friend will be trying to bail you out. A best friend will be in the cell next to you saying, 'Damn, that was fun.'"
I don't get major side effects just very mild flu like symptoms but i can't say that i look forward to injection night or holidays and having to think about Avonex, the constant reminder that i have ms
How would you know if it's messing around with your immune system?
I understand that some people don't tolerate some meds very well so that's why they are not on them.
I was just curious why others who are ok don't go on them in the first place because they are well.
I know it's a very individual thing and not everybody chooses to be on a med.
Joined: Jan 28, 2005 Posts: 735 Location: Northern Ontario, Canada
Posted: Fri Jun 27, 2008 5:43 am Post subject:
Quote:
From reading posts on other ms forums i get the impression that lots of people who are doing well with their ms choose not to take any of the ms meds and some say that they will wait until they "need" them.
makes you wonder doesn't it. _________________ ~i guess i know i just hate how it sounds~
I see seven towers
But I only see one way out
Joined: May 04, 2006 Posts: 3395 Location: Mid-Michigan
Posted: Fri Jun 27, 2008 7:36 am Post subject:
Just as one case example....we have good insurance so in our case cost wasn't an issue, although cost if obviously an issue that hasn't been mentioned so far.
My wife went on Rebif as soon after diagnosis as possible. As you mentioned, she didn't look forward to the injections but seemed to be tolerating the medicine well and I think she was well into the routine of taking Rebif for the rest of her life.
As it turns out, before she titrated to the full Rebif dose her neuro called and said that her liver enzymes were high and that she should quit taking Rebif until told to start again.
By the time we finally got the call that it was OK to start again she just couldn't talk herself into returning to the pincushion mode.
Bob _________________ Wife diagnosed with MS in Feb. 2006 and is a participant in the Tovaxin IIb clinical trial.
My husband started out with Avonex...he felt awful on it, couldn't self-inject anymore, and didn't think it was helping him or good for him (liver? Cancer? who knows what it could cause while it was 30% helping...or whatever they say it does.....). In any case, I would say his illness slowly progresses, with almost undetected flares....I don't think the crabs are helpful for someone like that.
Then he did copaxone for a while....that was bad too.
I think a lot of people start off thinking, yes, meds of course, and over time, they see how crap they are and wonder how much harm they are doing....
There are no long term studies proving that any of the CRABS really delay progression of MS symptoms. So, you have to take the drugs not knowing if they are really helping or if you would go down hill on the same pace whether you take them or not.
As I read through the various posts (for years) from people who have been on the meds or have quit them, I honestly do not see a difference between their progression stats and mine. I have not taken anything except for steroids for occasional flares. After some time into the disease even the steroids stop working.
I have really wondered why the insurance companies continue to pay for the meds without research which confirms that they delay the disease.
If I were just starting out with an MS diagnosis, my first recourse would be to try the ABX protocol because it obviously works for those that have a chlamydiae pneumonia infection which is setting off MS/MS symptoms.
If that didn't help, I would look at either Campath or Revimmune because those are the only other meds that are showing actual improvement in symptoms. I would not waste my time with any of the CRABS.
Joined: May 04, 2006 Posts: 3395 Location: Mid-Michigan
Posted: Fri Jun 27, 2008 9:27 am Post subject:
gwa wrote:
I have really wondered why the insurance companies continue to pay for the meds without research which confirms that they delay the disease.
I've often wondered that too, but despite having gained themselves the reputation of being void of human decency, the insurance companies do have to maintain some level of responsibility and reputation. At that level it doesn't matter whether or not the crabs work but becomes an issue of whether the crabs are commonly accepted as doing something beneficial for the patient.
Compared to gaining the reputation of unwillingness to pay for treatments beneficial to their customers the $20,000-$30,000 per the limited number of MS patients is nothing more than a business cost and might not necessarily reflect on the effectiveness of the treatment.
gwa wrote:
If that didn't help, I would look at either Campath or Revimmune because those are the only other meds that are showing actual improvement in symptoms. I would not waste my time with any of the CRABS.
I agree with the point you are trying to make but have to disagree with your reasoning. There is no reason to think that there is and there are an abundance of reasons to think that there is nothing specifically regenerative about Revimmune, Campath or Tovaxin and it seems that the improvement of symptoms instead documents that when the disease process is stopped the healing process is capable of amazing repair/neural rerouting.
Bob _________________ Wife diagnosed with MS in Feb. 2006 and is a participant in the Tovaxin IIb clinical trial.
If that didn't help, I would look at either Campath or Revimmune because those are the only other meds that are showing actual improvement in symptoms. I would not waste my time with any of the CRABS.
I agree with the point you are trying to make but have to disagree with your reasoning. There is no reason to think that there is and there are an abundance of reasons to think that there is nothing specifically regenerative about Revimmune, Campath or Tovaxin and it seems that the improvement of symptoms instead documents that when the disease process is stopped the healing process is capable of amazing repair/neural rerouting.
Bob
Bromley and Raven both have posted that they are doing much better with their symptoms reversed after taking Campath. Bromley was crawling to the toilet on all fours, so the fact that he is back to normal(whatever that is for Bromley) is a major plug for Campath in my book.
Chris has posted a home video which shows his remarkable gate improvement after a few months of Revimmune. I would personally pick either one of these procedures over years of sticking myself with a med that gives me flu symptoms, causes big red welts or deep holes in my tissue and which no one can really prove that it works. None of the CRAB's stops the disease, whereas the other two obviously do.
Now Chris and Bromley etal may eventually have eyes that turn shiny green and grow pointy ears, but to date they are doing much better than anyone else is doing on the alternate meds. I am grateful that they are brave enough to go through the process of being zapped and are in effect the new mouse models for research.
There are other drugs in the pipeline, but they are not on the market yet, so the choices today are slim indeed.
These are just my opinions, but this is such an insidious, life altering disease that I would be willing to try anything that REALLY worked and reversed symptoms, no matter what is responsible for symptom reversal.
Joined: May 04, 2006 Posts: 3395 Location: Mid-Michigan
Posted: Fri Jun 27, 2008 10:11 am Post subject:
gwa wrote:
Bromley and Raven both have posted that they are doing much better with their symptoms reversed after taking Campath. Bromley was crawling to the toilet on all fours, so the fact that he is back to normal(whatever that is for Bromley) is a major plug for Campath in my book.
You have Zero argument from me gwa. There is no doubt that Ian, Robin, Tim, Chris, Brett and Mel are doing better (and others....I can't name everyone) but what I'm saying is that the improvement in symptoms is due to Campath/Revimmune/Tovaxin stopping the disease process so that the body's healing process can work it's wonders and that the improvement in symptoms isn't due to some specific regenerative effect of the treatment.
It's hard to say that something is certain, but considering how long it has taken researchers to find things that will stop the disease process, it is 100% certain that Campath, Revimmune and Tovaxin don't stop the disease process AND have independent neural regenerative properties....those odds aren't even within the realm of possibility.
Bob _________________ Wife diagnosed with MS in Feb. 2006 and is a participant in the Tovaxin IIb clinical trial.
It's hard to say that something is certain, but considering how long it has taken researchers to find things that will stop the disease process, it is 100% certain that Campath, Revimmune and Tovaxin don't stop the disease process AND have independent neural regenerative properties....those odds aren't even within the realm of possibility.
Bob
This is why the doctors are just treating RRMS patients because those of us with a lot of permanent damage will not show great signs of recovery like the newer patients will, even if the progression is stopped. At this stage, even having the progression stopped sounds like a winner to me.
Joined: May 04, 2006 Posts: 3395 Location: Mid-Michigan
Posted: Fri Jun 27, 2008 1:25 pm Post subject:
gwa wrote:
This is why the doctors are just treating RRMS patients because those of us with a lot of permanent damage will not show great signs of recovery like the newer patients will, even if the progression is stopped. At this stage, even having the progression stopped sounds like a winner to me.
Absolutely ON THE MONEY!!
What you said is the "safe" way to describe the situation. I think once the disease process is stopped there is good reason to think that everyone stands to improve with time and effort and the million dollar question is how much time and effort is a 50 or 60 year old person willing to go to in order to regain function?
Bob _________________ Wife diagnosed with MS in Feb. 2006 and is a participant in the Tovaxin IIb clinical trial.
It never even occured to me that cost would be an issue or a reason not to take meds (if one chooses to of course).
I'm in Australia and it costs me $30.00 per month for Avonex. If i was unemployed or on a low income it would cost me $3.00.
I'm always wondering if Avonex is actually doing anything for me or if i'm wasting my time taking it but i choose to believe that for the moment it is better than nothing as i'll never really know for sure what the hell it's doing.
I'm hoping that by staying well which could just be luck more than anything i'm giving my body the opportunity to do some healing and hopefully ms will go back to sleep for the next 80 years.
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