Biogen has recently changed the wording on the Touch Pamphlet for Tysabri and it now reads:

other treatments for MS

Here's the link -

http://www.fda.gov/ohrms/dockets/ac/...n-Addendum.pdf

Thanks Cheryl. I didn't see your posting until later.

I didn't actually mean that Lauren was reckless or irresponsible (I appreciate that Lauren was just offering her amature opinion, just like me ). What I meant was that I felt Bethany's neuro was, for offering this option up so soon, and before other CRABs were tried.

Cherie

You are welcome. I think maybe we were posting at the same time.

I am not sure who Lauren was calling reckless and irresponsible but it came across as tho she was calling you that and not Bethany's neuro. If she was not, then I will take back my comment!

We may not have the whole story of Bethany's medical history, but we are all amateurs when it comes to offering medical advice. We can only offer our own advice based on our own experience.

As you and I both know, quoting stats just tends to fuel the fires and gets no one anywhere! Offering informational websites for someone to go to and read for themselves is the best way for them to learn!

I read it the same way you did, however, I thought perhaps Lauren misunderstood my comment about neuro biases, and retaliated against me personally.

What I didn't understand though is why I was accused of providing incorrect information, when Lauren only seemed to repeat what I said in my initial post. Or was I missing something?

Yep, statistics are only a number. The important part is what our various options are, the possible risks/personal side effects, and whether the drug works for us as an individual.

Cherie

Hey Bethany, better late than never...huh!

I am no longer on any of the MSMDs, but took my turn with Avonex and Copaxone. Notta results with either....kept right on progressing in disability.

I am also on LDN and have been for 4 years. In that four years I have not progressed any further in disability. Unfortunatel, I didn't start it untill I had already progressed to SPMS. I am just so thankful that LDN seems to have stopped my MS progression.

BTW Naltrexone is FDA approved...it has not been approved for MS, as so many meds we take are, also, not approved for MS. We are prescribed and use LDN off label so to speak, as are other drugs that were not created for MS but do help in the maintenence of our illness.

If Rebif is not doing the job for you, then "off with it's head" Copaxone may be worth a try or Tysabri-(Not special, just another MSMD).. I chose the cheaper, safer, more efficient, feel good Med (LDN) ...so sue me...LOL.

Whatever you decide, Bethany, I wish you much luck and good health.

I don't think you missed anything

Thanks so much!!

You guys have been the best...

With my limited to NO knowledge on any of possible therapies, I'm pretty lost. But feeling more a bit confident.

Another random question...
relapse? exacerbation?
is there a difference? how do you know when you're there?

my situation has been the same, or occasionally worse on the rebif, since last September.

I guess part of my challenge is that I don't know what to ask, what language to use or how to follow up the responses to get the BEST info...

most of what I find is patronizing (poor you... your life isn't really over ), WAY to medical & technical (I'm not really sure it's English!) or written by the drug peddlers (screw the options-- give ME your $$$!!)

I'm slowly putting together my usable, non-partisan info, but it's rough. I feel like I'm losing time... as if I'll find the right questions to ask after it's too late...

Like Monday I called and said I *think* this new headache *might* be optic neuritis... left the message w/the secretary... he called back Tuesday to ask IF i was still on the rebif. Then said to just take 2 motrin w/ the rebif and make sure I came in for my next appt 8/20.

I'm feeling a bit frustrated & disconnected... and this is neuro #2 since March (not counting the 2nd opinion visit to Hopkins)....
I feel like I'm whining and I'm so NOT this down, dejected type person!!!

UGH!!

Bethany

Sheesh, I know what you're saying. It's all so frustrating. Keep in mind that our Docs are also frustrated, because they can't cure us and the choice of MS Meds given to them are only possible bandaids, which may or may not slow the MS progression.

The fact is that these MSMDs do not help all PwMS nor all types of MS, so it's a crapshoot and if one or all of them is not doing the job and hurting your quality of life, it just isn't worth it, IMO, to keep on shooting yourself up with it.

Keep asking questions (whining)...A squeaky door usually gets oiled first. It's your life and your illness and they are supposed to be helping you.....not the other way around.

Hi Bethany,

I think the best source of accurate information is the NMSS, but personally, I found that too overwhelming when I started reading up on MS. I definitely refer to their information when I want to know a specific answer though.

I wrote up some "notes" many years ago, that helped me (and other newbies) understand MS a bit better. Much of it based on my understanding/opinion, but you may find some of the information helpful as far as a simple starting place for further research . . .

The first year after dx is the most emotionally difficult, for the entire family. There is a lot to learn, and often the Neuros do not give us much time to decide on a course of action.

I would recommend that a new MS'er do their research before agreeing to any treatment plan. At the end of the day/week/month, it is very likely many of us will go along with our Neuro's suggestions for medication, but it is important to process our grief (shock, denial, etc) and research the options first.

There are 4 mainstream disease modifying drugs used for RRMS . . . all of which are administered via injection. One is Copaxone, and it's active ingredient is Glatiramer acetate. It is known as a immune stimulator or enhancer.

The other three are Rebif, Avonex and Betaseron. They are interferons, and are known as immune suppressors. In short, the four of them are (lovingly) referred to as "CRABs" or "ABCR drugs", by using the first initial of each drug name.

The four of these drugs have been in the market for about 10 - 15 years. Statistically they are said to help 20% of the people by lessening the severity of their attacks, and by reducing the number of attacks from 10 to 7 (30%).

When we are in an attack (exacerbation/relapse), the lesions are usually inflammed (enhanced on a MRI), and we are experiencing short-circuits in our bodies. Once the attack dies down, the lesions become plaque (scar tissue).

The process:

1. We have new symptoms, or worsening of old symptoms, that last beyond 48 hours. This phase of an attack/relapse/exacerbation, lasts usually anywhere from 1 to 6 weeks.

2. We then go into an attack 'recovery' phase, whereby our symptoms start to subside. Recovery lasts anywhere from 0 weeks - 2 yrs.

3. After full recovery, we may be left with some lingering/ongoing 'permanent' symptoms, or we may FULLY recover.

4. We will likely have another attack (and go through points 1 - 3 again).

**We also have flare-ups/fluctuations that will last for 0 - 48 hours, and occur usually as a result of stress, fatigue, heat, etc.

**We NEED to learn to listen to our bodies and avoid the triggers that set off the symptoms. Most IMPORTANTLY, avoid infections/a rise in body temperature.

**When symptoms occur for longer than 48 hours, we should first be checked be for a UTI/bladder infection. Bladder infections are very dangerous for MS'ers (see site link in the "Symptoms" thread, under "bladder").

**An attack is not recognized as a new attack, unless there has be a 30 day break since the last attack.

Steroids are sometimes used to hasten the recovery from an attack. They apparently do not improve the degree of recovery, and they do not prevent the next attack. They may be particularly necessary if our swallowing, breathing, or eyesight are effected (otherwise I personally avoid them due to the potential risks).

There are plenty of side-effects that must be weighed out before starting on steroids, or the CRABs.

For steroids, the list includes:

Short term use:
- allergic reaction
- insomnia
- psychiatric disturbance
- stomach upset
- fluid retention
- increased appetite
- acne
- bone damage/avascular necrosis (although rare, it can occur even after a single dose of steroids)

Long-term use:
- weight gain
- high blood pressure
- cataracts
- hardening of the arteries
- diabetes
- life threatening infections
- osteoporosis, or other bone damage

** There is also a non-mainstream drug option, with a very good reputation amungst MS'ers, called LDN. It is an FDA approved drug, in it's higher dosage of 50 mg (vs. what we take, 4.5 mg), but is not specific to MS. That is true of many drugs that we take, in fact. It's worth researching this option . . .

** There is also a fairly new to the market drug called Tysabri (which Lauren mentioned). I would advise you research this option thoroughly before considering using it . . .

There are MANY symptom management drugs available that can make our lives more bearable. They can also have their own side-effects, so I personally tend to use all drugs sparingly. Physiotherapy, diet, exercise, managing our health/stress ~ all seem to have a great effect on the disease. This is where I personally devote much effort.

MRI's are just one tool used in the dx, but the results of this test, or a spinal tap, are not necessarily reliable. That is why Neuro's first eliminate all other conditions, and factor in "other" testing results (clinical, Evoked Potentials, patient history), etc. into the dx process. It's an unfortunate reality.

Lesions located on an MRI are the "proof" that we have MS, but they are not the be-all, end-all as far as diagnosing MS, or monitoring progression.

Many MS'ers have continued to progress in disability, without more lesions showing up, and without any further relapses. That is why it is not necessarily accurate to evaluate the efficacy of our drug options by looking at our MRI and/or relapse reduction results.

All treatment options should be based on how we feel on them, and more importantly, whether our disability continues to progress.

What to expect, in the longer term:

This disease is falls into a "hope for the best, but plan for the worst" scenario . . .

- we live a life of "unknowns"; "if" something will happen; "what" may happen

- we live almost a normal lifespan and won't die from MS

- there is a slightly higher chance that our children will be born with MS

- the vast majority of us never end up in a wheelchair

- we didn't cause this disease, and can only manage the symptoms; rest, avoiding stressful situations and infections, drugs, etc.

- the symptoms are highly variable for each of us

- the disease can be fairly benign, or very aggressive . . . usually the first five years may give an indication of the long-term prognosis

- the disease is progressive; we will likely get worse, to some degree, eventually

- most of us have attacks (where we don't function well), then remissions (where things are 100%, or with some ongoing obstacles)

- many of us are happily married, to someone who is loving and empathetic (required characteristic for our mates)

- some of us can not continue working after some time with the disease, or at certain times during the process, but others continue to work throughout their lifetime

I found the people on most of the MS boards extremely supportive and very knowledgeable. However, sometimes the people and/or the BOARD can be very biased, so my advice would be to ask the same question, or review the information in the "search" function at various boards, before coming to any conclusions about the validity of the advice given.

Cherie

Bethany, maybe it is time to go back to those Drs. and have a talk about that Rebif. Maybe it isn't working. Maybe you are having a flare.

So my advice would be go on in the Doc and see what they advice.

(oh, and eat chocolate! )