Starting treatment

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Starting treatment

Postby bromley » Wed May 24, 2006 3:10 am

Pros and cons of starting multiple sclerosis treatment early

An editorial accompanying a published debate on the pros and cons of starting treatment early in the course of multiple sclerosis comes down in favor of early treatment for this potentially devastating disease.
This opinion coincides with a consensus paper published by the US National MS Society.

The April issue of the Archives of Neurology features both sides of this debate on early treatment for MS.

Background: Currently five therapies are approved by the U.S. Food and Drug Administration for the treatment of multiple sclerosis. These agents can reduce future disease activity for many individuals with relapsing forms of MS, including those with secondary progressive disease who continue to have relapses. The National MS Society's Medical Advisory Board recommends that initiating MS therapy with an immunomodulating drug (such as FDA-approved interferons or glatiramer acetate) should be considered as soon as possible following a definite diagnosis of MS with a relapsing course, and for selected patients with a first attack who are at high risk for MS. Some clinicians disagree, however, choosing to defer treatment until the extent of disease activity is more clearly established.

The Debate: E. M. Frohman, MD, PhD (University of Texas Southwestern Medical Center at Dallas) and an international panel of coauthors present the following arguments in favour of early treatment in an article titled, "Most Patients with Multiple Sclerosis or a Clinically Isolated Demyelinating Syndrome Should Be Treated at the Time of Diagnosis" (Archive of Neurology 2006;63:614-619):

Most who have MS will develop significant disability over time, and when MS is initially diagnosed, it is impossible to determine whether its course will be disabling or benign (mild course of disease).

Studies show that injury to nerve fibres - which leads to the progression of disability that can occur in people with MS - begins early in the course of the disease. Even if a person appears to be doing well, with few clinical relapses, there may be evidence on MRI of tissue damage and loss that is associated with eventual disability.

The approved agents decrease the number and severity of relapses, the number and size of new lesions (areas of damage to nerve-insulating myelin), and progression of disability. These treatments work best early in the course of MS, and do not work as well during progressive stages.
Delaying treatment has been associated with more progression of disability and a larger volume of disease damage as seen on MRI.
The authors conclude that, given that therapies can significantly reduce MS disease activity, then "almost every" patient early in the course of MS should be offered disease-modifying therapy.

On the other hand, Sean J. Pittock, MD, and colleagues (Mayo Clinic, Rochester, MN) cite the reasons for delaying treatment until the course of MS becomes more apparent in an article titled, "Not Every Patient with Multiple Sclerosis Should Be Treated at Time of Diagnosis" (Archives of Neurology 2006;63:611-614):

If left untreated, MS often runs a "favourable" course, but it becomes difficult to distinguish a favourable course from treatment success if people are treated for a long time.

The approved treatments are only partially effective in the short-term; it has not been proven that they can prevent long-term disability.
Drawbacks to treatment include the cost, adverse effects, neutralizing antibodies (immune system proteins that can interfere with the effectiveness of interferons), and some patients' reluctance to make a long-term commitment to taking injected medications.

The authors suggest that monitoring people with MS regularly with clinical examinations and MRI scans may help to identify people whose course requires treatment with disease-modifying therapies. They conclude that well-designed studies are required to determine whether early, versus delayed, treatment of relapsing MS makes a clinically meaningful difference in terms of the development of disability.

In an accompanying editorial, E. S. Roach, MD (Wake Forest University School of Medicine, Winston-Salem, NC) comments on the two reports and concludes in favour of early treatment (Archives of Neurology 2006;63:619).

"One approach, as proposed by Pittock and colleagues, is to defer treatment until the patient's course is better established, possibly allowing those with less aggressive disease to avoid years of unnecessary treatment," comments Dr. Roach. "But as Frohman and colleagues counter, most people with newly diagnosed MS do progress, and we must consider that treatment could be less effective if started later in the course of the illness."

Dr. Roach notes the necessity for finding specific evidence that some people do not need treatment. "Without such evidence for individuals with MS, it will be difficult to know for sure whether it is ever safe to defer treatment," he concludes. "While it would be wonderful if we could avoid treating some patients with MS, until we can distinguish these individuals from the others, it is probably better to offer treatment to all patients except in the setting of a clinical trial."

Source: News-Medical.net ©2006 News-Medical.Net
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Postby Dunmann » Thu May 25, 2006 5:38 am

Here's another article about starting treatment early.

Early multiple sclerosis treatment has 'remarkable' benefits

Starting drug therapy before a confirmed diagnosis of the nerve disease can delay its progression
Very early treatment of multiple sclerosis (MS) -- before doctors have even confirmed their diagnosis of the nerve disease -- can significantly delay its progression, a Canadian-led study shows.

MS is an often disabling disease of the brain and spinal cord in which the immune system is believed to attack the myelin covering that protects the nerves. These attacks can affect vision, muscle control, speech, memory or bladder and bowel function.

Usually, doctors don't start treatment until a person has had two separate attacks, but Dr. Mark Freedman of the University of Ottawa and his colleagues found they could delay the development of the disease by starting people on a drug called interferon beta-1b (brand name Betaseron) after just one episode of symptoms suggestive of MS. Freedman describes the treatment benefits as "remarkable."

The study involved 468 people who'd had just one MS-like attack, as well as at least two areas of nerve damage visible on a brain scan.

Freedman says there has been controversy over whether people in this situation should be treated because, strictly speaking, they have not met the criteria for MS.

The study participants were randomly assigned to receive injections of interferon beta-1b or inactive placebo treatments every other day for two years or until they were diagnosed with MS, whichever came first.

The results indicated that interferon beta-1b delayed progression to MS by almost one year (363 days). In the drug group, 28 per cent of patients progressed to MS within two years, compared with 45 per cent in the placebo group.

"You have to start (treatment) at the earliest stage of the disease, where you can have the most impact," Freedman says, adding once the disease takes hold, the treatment does not appear to be as effective.

An estimated 55,000 to 75,000 Canadians have MS, according to the Multiple Sclerosis Society of Canada.
Dunmann.
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Postby LisaBee » Thu May 25, 2006 5:22 pm

The question is: is delay of progression to MS by 363 days worth the injections for two years? Or worth the spread 28% MS on the drug versus 45% on the placebo at the two year mark? Or would recovery from the event and living life to the fullest for two years without a drug full of side effects be a better choice if you were one of the people who were going to develop MS anyway?

I don't know. I am grateful that physicians offer treatment early, instread of making patients wait to start treatment, if the patient wants the treatment.

On the other hand, the patient can opt out of treatment, and there are arguments for doing that as well, as they relate to quality of life and the total uncertainty of life in general. For me, CRABs don't improve the quality of life as I'm living it now, but rather would take it away, and I don't see much promise for what they would offer me down the line. A bird in hand is worth two in the bush, so to speak. But that is a very individualized decision and everone needs to decide for themselves. If the researchers could come up with better prognostic predictors AND measures of drug responsiveness, perhaps even to pre-screen for the drug most likely to help each individual, that would greatly improve making a decision with the existing medications available.

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Re: Starting treatment

Postby Lyon » Sat Jun 10, 2006 12:43 pm

:o
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'diagnosing' ms

Postby jimmylegs » Sat Jun 10, 2006 1:11 pm

hey bob, there is no concrete diagnosis for MS. all they have is a check list of conditions. the more things you have on the list, the higher your percentage likelihood of developing or having MS is. i'm right up in the high 90s right now, awaiting only my second attack.

i was out walking with my little group the other day, and a friend of mine told me about her friend whom they had been supporting through her MS diagnosis and treatment, going on MS walks and everything, and then this patient recently had her MS diagnosis reversed - she was told no she did NOT have it. i did not find out what they thought she DID have.

anyway for now, i have set about removing items from the 'diagnostic' checklist. i am pretty determined that there will not be another attack. this one is dragging on for long enough, thanks very much!
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Postby Lyon » Sat Jun 10, 2006 2:43 pm

:arrow:
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monophasic ms

Postby jimmylegs » Sat Jun 10, 2006 3:19 pm

i think it is possible to have a one timer, bob. that's what i'm hoping for in my case and am working to get some of my stats out of the ranges typically found in MS patients, such as low b12, generally more time spent indoors, low serum vitamin D, low calcium, low magnesium, etc etc.
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Re: monophasic ms

Postby Lyon » Sat Jun 10, 2006 4:33 pm

:(
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one attack does not equal ms.

Postby jimmylegs » Sat Jun 10, 2006 5:33 pm

bob have you read this kind of thing? like the thing where 32% of people with a first attack have still not experienced a second 14 years later? but they diagnose ppl from one attack and an mri based on 'clinically silent' lesions (silent, like every single one in my brain).

"Diagnosis of multiple sclerosis is based on the principle of dissemination in both time and space. Recent criteria state that patients should experience two attacks of neurological dysfunction, such as optic neuritis, transverse myelitis, double vision, or numbness and tingling of the leg, occurring at different points in time and affecting different parts of the central nervous system—that is, signs or symptoms that cannot be attributable to a single lesion.1 Many years may elapse between first and second attacks, and not all patients who experience a first attack develop multiple sclerosis. In a study of patients with optic neuritis, a common presenting symptom of multiple sclerosis, 38% developed the disease by 10 years; of these, 50% received their diagnosis more than three years after presentation and 28% more than five years after presentation.2 In a study of patients presenting with clinically isolated syndromes (optic, spinal cord, or brain symptoms) 68% of patients had developed multiple sclerosis by 14 years, the proportions being similar for the different presenting symptoms.3"

more at: http://bmj.bmjjournals.com/cgi/content/full/332/7546/875
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Re: monophasic ms

Postby CureOrBust » Sat Jun 10, 2006 6:10 pm

jimmylegs wrote:... am working to get some of my stats out of the ranges typically found in MS patients ...

I havnt reaqd it, but i am guessing you are also working on your uric acid levels as well? or did you measure within normal on this?
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uric acid

Postby jimmylegs » Sat Jun 10, 2006 6:40 pm

hi no have not yet measured uric acid yet. always thought being high in uric acid was the danger (back in the days prior to access to online journals and so forth). at my first reading on uric acid, say in the early 90s, i thought i was on the right track being such a strict veggie. but i definitely have uric acid levels on my personal table for future investigation. i'm kind of stuck on d for the moment, having a spot of trouble with lab requisitions at present.
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Re: uric acid

Postby CureOrBust » Sun Jun 11, 2006 3:57 am

jimmylegs wrote:hi no have not yet measured uric acid yet. always thought being high in uric acid was the danger (back in the days prior to access to online journals and so forth)

Not sure if you are talking before your current readings, but its fairly well known that gout (the condition involving high uric acid) and MS are close to mutually exclusive. And, MS patients are known to be commonly below average.

<shortened url>
I originally had low uric acid readings in my blood test. I now take inosine, and the NAC I take as part of the ABX's has molybdenum (or however you spell it), both of which push up uric acid levels, and now mine are within the normal range.

I cant say I notice the difference between when i do or dont take it.
Gilenya, 80mg Lipitor, Inosine, Minocycline, Suppliments galore.
3 CCSVI treatments, no major noteable benefits thus far.
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Early Treatment

Postby jgkarob » Sun Jun 11, 2006 5:14 am

Hi,
I have a couple main points/questions.

If there is no way to determine just how the DMD (CRAB) drugs are working, then wouldn't it be good to set up a trial to see if intermittent use works? Or as an alternative, a yearly pulse dose? (If this is the correct term, if not, apologies)
If a person is relapse-free for one year, then they could come off their DMD to see if the MS has become benign/dormant?
(With the option of resuming the drug therapy if the patient feels that this is necessary.)

Also, wouldn't it be great if someone developed a test that could determine if a person would develop side effects to drug therapies?
As far as I know, there is no way to tell if distressing side-effects are going to occur.
This is a bit controversial, but I find it difficult to comprehend the reasoning behind decisions of people who qualify for DMD therapy and then reject it because they feel they may develop side-effects.
It was a leap into the dark for me to start treatment, but I have never experienced any side-effects, with the exception of injection-site marks.
For this, I am thankful, but I know I'm not the only person to experience this. When someone experiences rotten side-effects, they are going to talk/write about it. For those who don't - they aren't going to make a big issue of this. It's human nature.



I was diagnosed in September 2000 after probably 6 MS episodes from the January. By November, I could hardly walk and was doubly incontinent.
I started on Rebif 44 at the beginning of November and it stopped the by then, constant relapses. By March I was fine again. Since that time I have only had two relapses that required steroid treatment.
I was first ill in 1992 and almost died of autonomic dysreflexia. I recovered from this 'mystery' illness ((I had pretty obvious MS symptoms, but I was sent to a terrible NHS hospital) some 5 months later and then was quite well until 2000.

kind regards,
K Roberts
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uric acid and noticing stuff

Postby jimmylegs » Sun Jun 11, 2006 6:30 am

hi this an answer to cob, still off the string topic sorry all -

anyway, hi cob, sorry i wasn't clear, but yes i read a long time ago about uric acid and gout. i had no idea until recently, that low uric acid was associated with MS or any disease. but i will follow up on this. i wouldn't necessarily expect to notice extreme differences with fixing nutrient status.

once when i took on an old roommate's familial hypercholesterolemia with diet modification, the only way he noticed a difference was from bloodwork at the lipid clinic, and then also he needed to switch his eyeglass prescription as his vision improved. he began a physical job and kung fu classes at the same time and ended up getting a letter from his doctor saying that he had done a wonderful job of lowering his cholesterol to normal range without medication, and could skip taking the statin drugs. mind you, i stuck to that same diet for all the intervening years and now i have all this nerve damage. so as my mother always says, moderation is the key. i'm back to eating fish and eggs, and my fingers are crossed that i have not done permanent damage.

another thing on noticing differences - i have been taking a motherload of different supplements since my attack started. (i wouldn't take a damn thing prior to my attack, and when i would read that lack of b12 could cause neurological damage, i honestly didn't even know what that meant.)

i don't know which vitamins are doing what, but i did notice recently that my fingernails are much improved. they used to have pitting, and then in the last year began to discolour and separate from the nail bed now and then. my doctor said it was a problem commonly seen in patients (like me) with psoriasis. we tested for fungus just in case but there was none. anyway all my nails are now smooth-surfaced and firmly attached. now i'm just waiting for the skin lesions to go away! interestingly, topical calcitriol is supposed to be a good treatment for this condition.
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Early Treatment

Postby Tiffany » Mon Jun 12, 2006 8:10 am

I was under the impression that MS was like pregnancy, either you are or you aren't.....you either have it or you don't.


If only it was that simple.…!

In your research have you ever read that it's possible to have a single MS attack and not have MS?


The simple answer is yes but like with anything MS related the answers are never simple or clear.

I was diagnosed with MS 22 years ago and have in the last few months had my diagnosis overturned. It was explained to me that you can have an MS episode or possibly even two with no visible lesions or scaring remaining. This is not likely to be the case for anyone having two or more episodes.

However, you can continue to have all the symptoms without lesions being visibly present...It's also possible that the 'attack' is not MS at all but a one off mimic.

Its also important to remember that lesions can be caused by things other than MS and its also my personal belief that MS has not one but many causes. In the past year I've come across a growing number of people who have had a long standing diagnosis of MS and recently had it overturned so I'm for obvious reasons intrigued with the subject of 'how does anyone know if they have MS or not.'

It's not a subject many want to discuss and I can understand why as its hard enough to cope with having a diagnosis and dealing with the illness without adding the doubts on top. Yet considering how different Neurologists use different criteria for making a diagnosis how can anyone be sure their diagnosis is correct. I cant help but wonder how many people have a confirmed diagnosis that don't have MS and how many don't have a diagnosis that do......

I'm not looking to give false hope or to muddy already murky waters here but the fact that people are being wrongly diagnosed is a fact and is always worth bearing in mind.… On the other hand although my own diagnosis has been overturned, my neurologist wont say categorically that I don't have MS ...... it would seem answers are elusive whichever way you turn.....

Hope this does'nt confuse the issue even more!

Tiffany

ps apologies Bromley for going off topic!!
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