Treat MS like cancer

[Thinkimjob]

When I was first diagnosed 18 years ago, the neuro was keen to downplay the potential nightmare ahead.

It was all, "Take your DMD and we'll deal with symptoms if they arise."


Chose (Betaseron 'cos it was three times a week subcuatenous, sounded better than Avonex into the muscle and Copaxone every day. Now there's a way to choose your poison.)

She never mentioned anything too nasty. I was sobbing like a baby, so perhaps the time wasn't right.

I read all about it on the www, as it was, back in the day, bowels, bladder, wheelie walker, cog smog and thought, no, no, no, that won't be me, please don't let it be me.

But it is me.

I took my drugs, exercised, ate right. Most of the time.

Made the ten year milestone in good shape, thought yay, it is benign.
But it all went pear-shaped, and every "pseudo" symptom I ever came back with a vengeance, and has not gone away.

I've been dodgy about Tysabri and Lemtrada, because suddenly the neuros were pushing these drugs despite the risks, where before it was ,"MS, don't worry too much."

I truly think it is time to stop pretending that anything less than those high-power, higher-risk drugs should be first line of attack, not the last gasp.

Treat MS like cancer. No more ponying around.

[annedocuk]

In what sounds like your situation that is so understandable. ..... BUT......on the flip sids, you do not want to overtreat someone who actually will never need the heavy guns. Those guns have serious side effects too.

On the cancer side it is the same. Take breast cancer. Some people have a lumpectomy and some radiotherapy. Some have a mastectomy, nodes out of armpit, chemo and radiotherapy. Some unlucky sods have the first, then a few years later have to go on and have chemotherapy and more, and may even unfortunately then die. Would they have lived had they had the whole lot in the first place- no one can tell. But some in the first group might have had serious side effects from chemotherapy they did not need, including death, or become infertile, when the "lesser" treatment was all that was required.

It is always a tough call, but I do feel full discussion of all options should always be given, probably at a second meeting when the diagnosis shock has had time to hit a more rational thinking stage.

[dyin_myelin]

http://multiple-sclerosis-research.b...-misnomer.html

I think at issue here is: 90% of people with RRMS will progress after twenty years to SPMS, even sub-clinical MS is causing double the rate of brain atrophy, you will only know if you've won the 5-10% lotto after the fact, and even if your MS is deemed "mild" you exist in a constant state of anxiety that you will wake up blind, in a puddle of urine, or paralyzed. Also at issue is QOL. If you knew you were going to get cancer from Campath or Tysarbi when you're sixty, but have no disease progression for 20-30 years, would you take it?

[shel67]

You sound like me. I feel I was mild for a while with full recoveries and nothing in been flares. No symptoms, nothing triggering "old" symptoms. I was fine until this past January that changed my life. Over night I experience symptoms to are all over my body and that won't quit. How the heck did this happen? House can I go from mild no big deal symptoms that go away to this ? But I guess that how this disease is.

I'm with you. Give me the big guns so I can have a fighting chance. My doc wants me on Aubagio. I don't want that. I'd rather tysbri or the other oral. I don't think Aubagio is as effective as the others.

[palmtree]

When I got dx, I looked at the list of DMDs and zeroed in on Tysabri. I was already on a monoclonal antibody so I was familiar with them. I researched Tysabri thoroughly and saw that it was only for patients who do not respond to other DMDs or cannot tolerate them. I didn't mention it to my doctor because I figured it was no use.

Alas, I started Avonex, ended up with ON, chronic pain in my right eye, and a drastic flare that panicked my neuro into starting the Tysabri. If only I could have started TY at the beginning! What if I could have stayed my old self?

I wrote to the FDA to tell them my story and see it they would consider changing the controls on the Touch a Program. Sure enough it worked! Now others can have the opportunity to prevent disaster.

I think writing the FDA in Austraila to see if that could be changed would be a good idea.

Another thing that irks me is the panic about the JC virus. They find being JC positive increases the possibility of pML so suddenly patients are required to take the test and are, sadly, being taken off Tysabri just because of a blood test. A blood test that normally shows 50% of the population is JC positive. They still don't even know how much being JC positive increases your chance of PML. When the horrors of MS are not even taken into consideration.

[KatieAgain]

Personally, if I could start over with the drugs out there today, knowing what I know now...I would blast this disease with the biggest gun (drug) available.

I would not start my way at the bottom and work up. I would take my chances because right now all I am doing is chasing rainbows.

Like many of you previous posters...when my disease turned bad...it happened so fast.

[palmtree]

Katie, I'm with you. Blast this thing with the biggest guns available!

[annedocuk]

Mmmmm, maybe! I think it was the comparisons to cancer that got me thinking the other way. And the fact that I had just had a discussion with my neurologist as to whether to switch, but I took the coward way out and am staying on Avonex. This is partly due to the fact I still work and have minimal side effects from Avonex. I have decided things are tough enough I will sadly retire in October and I may revisit that decision.
I am so, so sad to be retiring........

[pennstater]

I am probably your classic, benign until it is not. I didn't get diagnosed until 13 years after 1st relapse which included vertigo for 6 weeks. I had minor tingling in one hand and some joint pain in between. I did have residual focus issues from 1st relapse. And actually, may have had even earlier attack, which would have put it 15 years 1st to 2nd major flare, and then 13 2nd to 3rd.

So for me, no drugs for 13 or 28 years. Even then, I had L'hermites, which was what drove me to a neuro 13 years later.

Started then on Avonex with hope I remained "mild". My progression has been slow, which I am grateful for, but progression still. Graduated from Avonex to Rebif to Tysabri. I have no illusions of what is happening. Worsening of old symptoms and less recovery from relapses, with more symptons .

I do wonder if DMT might have even slowed it further, but with the nature of MS, I doubt early DMTs would have made much of a difference. If anything, I think Ty rather than Rebif and Avonex would have eliminated some relapses. I sometimes think about stopping, whike Tysabri hasn't slammed the breaks, more of a skid and did slow progression down. Afraid I already won the MS lottery earlier, so why chance my luck again?

I could have been one of the poster people for about 18 -36 years after 1st relapse, even without the meds!

I do agree with Katie. I hope the young teenaged girl can keep being a poster child. God know she has to have more strength than most of her peers. Wish her all the luck as she tries to live the life I took for granted at that age, not knowing I even had MS.

[tl-tr3]

"Mild MS"

Fortunately I was diagnosed with "mild" MS. But only according to my MD's & MRI......
My symptoms don't match my MRI.
MS is kicking the heck out of my cranial nerves.
I have trigeminal neuralgia,glossopharyngeal neuralgia,and now vestibular neuritis, all on the right side . ( I've also have Optic neuritis x2 on the right side). I've added a 3rd neurologist to my list of MD's,
his specialty is ENT , joining MS Neuro & optho-Neuro.
I'm not feeling like I have mild MS- debilitating fatigue + all of the above.
MD's are hung up on treating MRI's not the patient.
Possibly this is why the heavy hitting meds that I feel can make a difference aren't discussed early , or for "mild MS".
-Just my experience-

[poppydarling]

I truly think it is time to stop pretending that anything less than those high-power, higher-risk drugs should be first line of attack, not the last gasp.

Treat MS like cancer. No more ponying around.

I'm right there with you. So sad to see the recent reports about Tysabri's long-term risks that are just now being discovered. I just don't think you should start out with a drug that has a 30% efficacy rate and keep someone on that for a decade or more thinking you're dodging a bullet. But most of these drugs are scary, and I don't appreciate having to decide between a rare cancer and a wheelchair.

We all know if we've had this disease for a while that the MRI results and even what we feel on a daily basis has not much to do with what's going to happen in 10, 15 or 20 years! I do know that it frustrates me no end that I'm seeing a MD/MS researcher who is been at this for more than 20 years and still has no answers.

[KatieAgain]

I'm right there with you. So sad to see the recent reports about Tysabri's long-term risks that are just now being discovered.

I have not seen any of these recent reports. I googled and came up with nothing. Could you please point me in the right direction so I can read these reports and possibly discuss with my MS Specialist next month.

I am going to post the question in the Tysabri Forum as well.

Thanks.

[ru4cats]

Posters to this thread might find the following presentation by Dr. Vollmer and Dr. Corboy of the MS Center in Colorado interesting. It basically says what most of us believe; hit it hard in the beginning with the most effective DMD currently available. The presentation starts at the 55 minute mark. The PDF of this presentation is the 2nd link. You will need the 2nd to help understand the 1st.



https://www.youtube.com/watch?v=VeMVeycCZxY
https://www.mscenter.org/images/stor...oy_DMT-ppt.pdf

[Thinkimjob]

Me again. We are caught between the proverbial rock and the other place.

If you take the nuclear option, maybe it will stop the MS, but maybe you wind up with something equally awful.
And you have so much time to think. Years, probably.
Do I risk it now, or do I wait?

I wish MS neurologists would decide what they believe, given current medical knowledge, is the best thing to do. Not based on anything other than raw facts.
Not based on "you might be benign, let's wait and see".

Me deciding what drug to take is like asking someone with early dementia whether they want to move into a nursing home. I really don't know, and I don't want to answer the question.

I want it to just go away.

And then you leave it too late.

[pennstater]

thinkimjob,

I know how scary the decision is. I made it because I was getting more symptomatic.

My own philosophy is that none of us know how many tomorrows we have, MS or not. I don't use this to be irresponsible and an excuse to not plan for tomorrows. But I want to do what I can now to have the best quality of life that is available to me.

So for me, Tysabri was the best choice to give me this. The first 6:years, the risks seemed too high, but once there was a way to identify and subsequently estimate risk for PML, I was in. I could live with the other risks.

If in the future It is discovered that Ty caused some other serious illness, I will still be grateful for the better quality of life it gave me. I will know I made the best decision I could with what information was available.

Even with neuro recommendations, it is such a personal choice. Everyone has their own risk tolerance, quality of life measures, and fear of the unknown. One person's monster in the dark may be another's unwelcome friend, relative or nosy neighbor.