ms drugs

If it's on your mind and it has to do with multiple sclerosis in any way, post it here.

Postby HarryZ » Sat Jul 31, 2010 8:05 am

cheerleader wrote:Harryz--
Nice to see you, sir... as someone who watched his wife deal with MS for almost four decades, and ultimately lost your life partner to this disease-- I think you deserve some props.

When Harry wrote about Dr. Hinton Jonez and histamine and corruption in pharma, a lot of us took notice and did our homework. Here's a classic Harryz post on pharma from '04...(you always did like to stir the pot :)

http://www.thisisms.com/ftopict-250-.html
cheer


Hi Cheer,

My goodness, I didn't even remember that I posted that article until I saw it again! Certainly brought back a lot of memories.

Having followed MS for so many years, I've seen a lot, both from the patients' perspective and also from the other side. Can't say that much has changed from the treatment side of things.

CCSVI has certainly stirred the pot a lot. There still has to be a lot of research done with that before anyone can say it will be of great benefit to MS patients. It is interesting to note that Dr. Hinton Jonez's use of histamine back in the 50's brought on large symptom relief for about 80% of the MS people he treated. Histamine improved the circulation of these patients...not as much as the CCSVI procedure does so we had an indication a way back then that MS's symptoms could be caused by poor circulaton. It's a pity that it has taken so long for this to evolve.

I guess time will tell just how much or if CCSVI will help in the long term. What we do know is that treating MS solely as an autoimmune disease simply hasn't worked.

Take care.

Harry
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Postby HarryZ » Sat Jul 31, 2010 8:13 am

But you see, for some people the drugs work.
This whole 'they don't work because so and so wrote it' is about as valid as my writing that for me, I haven't progressed because a)I'm lucky and b)Rebif has worked.


Yes, the CRAB drugs do help some people but it is widely accepted that they don't alter the progression of the disease. Compared to the number of people who use the CRABs, the success rate of their efficacy hovers around 30% for relapses and lesions Considering that MS, by itself, is a remitting/relapsing disease where lesions can come and go by themselves, makes it even harder to determine what benefit these drugs provide.

But if a medication works for you, then you use it and enjoy any reprieve you get from it. I've seen what MS can do to people over a long period of time and it isn't pleasant.

Harry
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Postby scorpion » Sat Jul 31, 2010 8:15 am

erinc14 wrote:neurologists have made a nice living pimping for drug companies . ccsvi will ruin it.


Please refer to the NIH web page of neurological disorders. What you will find are thousands of neurological disorders that neurologists see and treat on a daily basis. To say that neuros are worried CCSVI is going to put them out of a job is absurd. Most peoples lives do not revolve around CCSVI, including neuros. If CCSVI turned out to be a cure for MS do you really think it would put a dent in the pockets of the neuros? The reality of the situation is that most neurologists, who have spent many years of their life studying the brain and nervous system, do not believe that CCSVI causes MS. If you can paint them as heartless cogs of the healthcare system(which some may be) it is easier to dismiss their doubts about CCSVI instead of accepting that some very smart people who have spent their lives studying the brain, do not buy the CCSVI theory based on SCIENTIFIC grounds. If they turn out to be wrong, great for us.
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Postby jgkarob » Sat Jul 31, 2010 9:28 am

And makes just about no difference at all to neurologists working in the not-for-profit health providers.
My neuro sees few MS patients as it is pretty rare here. The majority of his patients are over 75 and have had strokes or dementia/Alzheimers.
In our area there are about 10 people with active MS.

The problem for those people who live in the US, is understanding just how healthcare works in other countries. Sure, there are private neuros but in the UK, most people who have private health insurance, transfer over to the NHS shortly after diagnosis, as their insurers won't cover MS.

Starting any sort of drug therapy is a slow process. The UK is one of the countries with the lowest DMD prescribing rate in the world.

The NHS neuros aren't allowed to tell people what to take- with the exception of very aggressive relapsing MS. Patients have to do their own research and then choose a drug. No drug reps are involved whatsover in the choice.

I don't really know why I'm bothering to write this. I read the same comments everywhere, that neuros are funded by drug companies, which in many places in Europe, they aren't and they also treat all neurological diseases.
No one takes any notice, or seems to.
My neuro also treats my husband, who has a huge arachnoid cyst and a malformed carotid artery.
He treats my neighbour who has had a stroke.
He is paid by the hospital, or rather the Xunta, the provincial government.

Whether Rebif has 'really' worked for me or not, we'll never know.
I had to stop taking it in 08 as I had run out of it and wasn't in the health system.
In 09 I spent two weeks in hospital with the first big relapse since 05.

I know I've been lucky, but in my view, it's worked.
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Postby Lyon » Sat Jul 31, 2010 10:41 am

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Postby cheerleader » Sat Jul 31, 2010 11:20 am

jg and Bob---you're absolutely correct. Perhaps, for this discussion, we need to specify "MS specialists" rather than general neurologists.

My husband's general neuro also gave us the CRABS packets and helped us decide on Copaxone, but she was by no means "pushy." (she's also not rich...) She sees stroke patients, migrainers, etc. And she is dubious regarding CCSVI, but by no means against further studies. Jeff and I like her a lot.

My concern is over the big time MS specialists at universities...the guys and gals that get lots of research money, speaking fees, and work directly with pharma companies in drug development and testing. These are the docs that get published, serve as editors of the medical journals, are on the national MS society boards, and profit the most from the pharma companies. That worries me...
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby HarryZ » Sat Jul 31, 2010 11:59 am

My concern is over the big time MS specialists at universities...the guys and gals that get lots of research money, speaking fees, and work directly with pharma companies in drug development and testing. These are the docs that get published, serve as editors of the medical journals, are on the national MS society boards, and profit the most from the pharma companies. That worries me...
cheer


The specialist neuro, who looked after my wife, is head of the MS Clinic here. They have done a ton of MS drug trials. When Tysabri had received its early approval, I asked him about his thoughts on this. He told me, with a sheepish smile, that "Biogen's data is not trusted all that much in the MS world of medicine."

Of course he would NEVER say this publicly and only told me this because I had known him for some time and developed a trust with him. One of many reasons why I don't trust Biogen at all.

Harry
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Postby erinc14 » Sat Jul 31, 2010 12:32 pm

Meanwhile, Dr. Brad Dibble thinks it's "total garbage" to hold off on the treatment until definitive research is complete.


http://www.simcoe.com/community/barriei ... cle/850931
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Postby erinc14 » Sat Jul 31, 2010 12:42 pm

W5 Investigates: Pills, Patients and Profits

http://www.ctv.ca/servlet/ArticleNews/s ... ?s_name=W5
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Postby Daisy3 » Sat Jul 31, 2010 3:29 pm

cheerleader wrote:jg and Bob---you're absolutely correct. Perhaps, for this discussion, we need to specify "MS specialists" rather than general neurologists.

My husband's general neuro also gave us the CRABS packets and helped us decide on Copaxone, but she was by no means "pushy." (she's also not rich...) She sees stroke patients, migrainers, etc. And she is dubious regarding CCSVI, but by no means against further studies. Jeff and I like her a lot.

My concern is over the big time MS specialists at universities...the guys and gals that get lots of research money, speaking fees, and work directly with pharma companies in drug development and testing. These are the docs that get published, serve as editors of the medical journals, are on the national MS society boards, and profit the most from the pharma companies. That worries me...
cheer


Speaking as an ex drug rep from the UK, the docs who were selected to give talks to others etc were people who were already well known in their sphere of influence. The more you see a doctor nationally/internationally, it's because of his/her own reputation and skill. Doctors are courted by the pharma companies, but who doesn't court their customers? What makes it frustrating here is that the damn drugs don't work.
Certainly here, being seen to be courted by the pharma companies is not appreciated and is almost a source of embarassment for the docs involved.
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Postby HarryZ » Sun Aug 01, 2010 6:43 am

erinc14 wrote:W5 Investigates: Pills, Patients and Profits

http://www.ctv.ca/servlet/ArticleNews/s ... ?s_name=W5


People on this forum know my thoughts and feelings about some drug companies. I've been accused of expressing "sour grapes" on more than one occasion when it comes to this topic.

After viewing the video at the link provided, I rest my case!

Harry
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Postby Zeureka » Mon Aug 02, 2010 3:51 pm

That W5 video is really interesting!
Speaking for Italy and Belgium I would confirm that the neurologists do not seem to push for med prescription. This indeed also for budgetary reasons and government rules on a limit of prescriptions and very strict criteria as of when CRABS can be prescribed.

When I was diagnosed with MS I was fighting myself to get interferone prescribed as had read studies reporting that in particular in early MS onset effective. There was a rule of at least 3-4 relapses per year and my neuro who saw I would not let loose helped me to get her report presented as to get me first approval from the health insurance. The yearly prolongation was then relatively easy to get, as my relapses had completely stopped, and this was valid as proving the med's need/effectiveness for the health insurance.

In addition, in Italy the neuro department in my hospital only prescribes Rebif 22 (if prescribes anything at all) - and only because I get prescription in Belgium I have the 44 dosage. I once asked my Italian neuro why the hospital always prescribed only 22 versus 44 in Belgium (where the neuro had told me 10% more effective - and answered: do you NOT want those 10%?). And his answer between the lines made clear that the main reason are budgets.

I thought already since a while that it is very ironic that 5 years ago was fighting for getting my med prescription and now have been fighting for getting CCSVI treatment...and this time out of my own pocket. But things/minds are changing and that's good.

But the med in combination with Swank diet helped me really to eliminate relapses (whatever more of the two - or really the combination - noone can ever tell!). Anyway, I will not stop my cocktail for now. I am relatively well and simply cannot take any risk of getting worse (it would be crazy!). So will continue adding whatever new therapies evolve, hoping in particular on further progress on CCSVI research to increase my chances of remaining stable. CCSVI jugular intervention certainly already had impact on reducing my fatigue 8) and also do well on IBT. This means more energy for family and friends and for keeping my job that I enjoy :)
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Postby coach » Tue Aug 03, 2010 7:35 pm

Can't help but to agree with you erinc14. Oh by the way good to see HarryZ posts. Always enjoy them. Haven't been on this forum in a while.
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