hi learning the meds.... my doc uses tysabri

[sunshine008]

hi

so i just read the whole discussion on that drug tysbari i hope im spelling it right.

apparently i found out today at my evp test that he puts most patients on that med. i just read up about it i do not want that med.

has anyone found avonex to be beneficial in relapses or lesions etc.??

i as i'm sure many of you want the lowest risk med. i tend to have a weak immune system each year get pnuemonnia so i don't wanna go down that road for sure. hope he doesn't fight me on it.

any thoughts??

[Kimba22]

Sunshine008,

Unless your MS is very aggressive, I wouldn't expect him to bring up Tysabri (I would seriously question his motives if he did). It's rx'd if you have already unsuccessfully tried at least one other DMD. No need to pull out the "big guns" that pose such a serious risk as PML until you need to.

You should expect him to recommend one of the CRABs or Extavia first. You also need to tell the dr. about your history of pnemonia. He needs to know the status of your immune system, esp. when rxing steroids.

Avonex (and all the interferons) are immunomodulators. They don't really supress your immune system, just change (modulate) how it works. Gilenya is an immunosuppressant, since it lowers your lymphocyte counts. (You don't want to go there if you have a history of a weakened immune system). Copaxone is not either one, it basically works by providing decoy t-cells for the MS to attack.

Each person's response is different to drugs. If one doesn't work to control your MS, or you experience adverse side effects, expect to be offered a different one. I know the idea of a shot everyday isn't appealing, but since Copaxone doesn't affect your immune system, I'd suggest considering that one first. Unlike the interferons, it also doesn't require monitoring your liver, either.

Best wishes,

[sunshine008]

thanks for all that info. i had no idea that other one was for aggressive ms. he seems to think tha'ts what i have yet that's only because my sensorys been affected.

i'll have my second contrast mri next week to see which lesions are old which new. thanks again!!!

[MrsBones]

Here's a good page from the Shared Solutions ( the patient support for Copaxone) site that explains how the CRABS (all immunomodulators) are thought to work and compares all the commonly used DMDs:

http://www.sharedsolutions.com/Infor...Therapies.aspx

The site above sites its sources, so you can be sure the info isn't just a sales pitch. Also, poke around the rest of the site and you'll find some good, easy to understand, info about MS and the immune system.

Here's some info from the NMSS on all of the DMDs :

http://www.nationalmssociety.org/abo...nts/index.aspx
You can find links for all the DMDs and from their individual pages, find their websites and phone numbers to contact them directly for more info. I also suggest taking a look at the PDFs below the med links for some good general info. It's a good idea to research the meds before he writes the rx and decide what you want to use. Combine his input with your own choices and research, then decide. It's ultimately your choice.

I'm with Kimba22...if your dr prescribes the same aggressive medication for most of his patients, run, don't walk to another neuro. Get a second opinion and be sure Tysabri is right for you.There is no one size fits all drug for MS. If he is indeed rx'ing Tysabri for most of his patients one of two things is going on: either he has every uber-aggressive and drug resistant patient in the area or he has questionable knowledge, experience and/or ethics.

I don't know him or your history, and obviously I'm not a dr, but just going by what you've posted, I'd have to question him if he suggests Tysabri. You don't sound to my ears to have a particularly aggressive course. But then again, some drs seem to forget MS is a progressive disease. No matter what type you have...you will progress....you could have new lesions. Those drs, however, will have still have unrealistic goals in disease management.

The DMDs only promise to reduce the amount of new lesions and relapses, not stop them. However,those same docs get nervous if they find one lesion and rx a more aggressive treatment.

That's partly their style and attitude and partly their experience. If that attitude, style and experience matches what you and your MS need, great. If not...if you have any doubts, feel he's too aggressive or not aggressive enough, call him on it or just go to another dr.

Wish you the best of luck....the DMD choice isn't easy.

[inmoni5]

Hello.
My ms I guess is aggressive too at least so far. I am on Copaxone myself. My neuro let me pick which drug I wanted to go with and my gut said Copax. This was my diagnosing neuro that made that choice.

Now, I did go to see an MS Specialist in April after she went through my MRI and did the physical exam she came right out and said that she wanted me to use Tysabri.
I refused. Maybe not to smart...but for me...I don't feel comfortable with anything else.

I believe it is a personal choice for you and only you can make the ultimate decision. Listen to your doc, ask why they want the drug that they suggest to you, but ultimately it is your decision and what YOU feel comfortable.

[Myoak]

A quote from Tim Vollmer, "If we wait until patients have fixed disability, we have waited too long. They have lost so much neural tissue that we can't restore function. What I think is critical for everyone to understand is this: it's not where patients are now that's is important. It's where they may be when they are 55 or 65 years of age.What we are trying to do is protect their brains for their futures." Although Dr. Vollmer may not have had Tysabri in mind, I believe the quote contains a legit consideration.

Perhaps, your doctor may be suggesting Tysabri based on what he (or she) believes will provide you with maximum benefit. Just a thought.

[MrsBones]

A quote from Tim Vollmer, "If we wait until patients have fixed disability, we have waited too long. They have lost so much neural tissue that we can't restore function. What I think is critical for everyone to understand is this: it's not where patients are now that's is important. It's where they may be when they are 55 or 65 years of age.What we are trying to do is protect their brains for their futures." Although Dr. Vollmer may not have had Tysabri in mind, I believe the quote contains a legit consideration.

Perhaps, your doctor may be suggesting Tysabri based on what he (or she) believes will provide you with maximum benefit. Just a thought.

That's a good point and one that is definitely part of everyone's plan.

However, given the stats that were compiled pre-DMD on disability , time to disability time frames and progression to SPMS, unless your MS shows itself to be aggressive, like mine ( running 1/2 marathons to wheelchair in less than a year, going from 26 brain lesions to innumerable in less), treatment with the least risky , but appropriate, drug is the way to go.

For most people , that's the CRABs. For others it's Tysabri or even one of the chemos. I don't dispute the concept or the use of Tysabri.

I just think that one needs to be sure that the drug suggested is appropriate for them, according to both best medical practice and what they feel is right for them. Especially when a dr rx's it for most of his patients. As I said before, there is no one size fits all drug for MS.

You would have to really think it through , no matter what that drug was. Copaxone or Rebif aren't appropriate for everybody, some need something stronger. The reverse is also true. Tysabri , Gilenya and chemo aren't appropriate for everyone either. There are also people who have been taken off their DMDs by doctors at centers like Mayo because they are completely stable and the dr feels they don't have a need for any DMD.

The trick for a doctor is to find that balance between benefit and risk. If one drug, regardless of what that drug is, is indeed being rx'd to most patients, that balance isn't being considered. Some patients are taking risks unnecessarily and others may not be getting the drug they need to appropriately control their MS.

Individual patients need individual treatment plans to achieve a realistic goal of controlling their MS, now and for the future.

That's the part I'm questioning, not the use of aggressive treatment where it's needed, but that it seems the dr may be using a single drug as his standard practice, ignoring what individuals actually need. I know "most" is not "all", but considering that there's 6 commonly used drugs, not counting chemos,etc, it's enough to make you wonder.

Considering sunshine008 "found out" he puts most of his patients on Tysabri and it isn't clear this is 100% true or that he's suggested any drug for her, the whole conversation could be moot anyway.

[Myoak]

You make so many good points Mrs. Bones. Treatment often comes down to what risk we are willing to embrace, everyone has an individual threshold which fits them and a good doctor will take time to learn what that threshold is.

[sunshine008]

i think i like my dr hes a straight shooter yet he's also a bit of a players. not to avoid sounding a tad bit paranoid i've learned the med game for years with pyschiatric meds.

my daughter has bipolar, and i have been to docs that will only use certain meds, why? because they are infact getting a kick back on them.

so this guy is treating each person with whom is aggressive?? see my point? it should be individual. he knew i got him today when i said to him so i've been looking at meds, and he said yes we have to discuss which one. i said well what do you suggest and sure enough w/o even the second brain mri w/contrast and 11 lesions located so far w/o spinal mri he said tybari. i said really even with all the risks and not knowing if i'm progressive or not yet? i said i rode a horse yesterday.... i can't be that progressive.

so he said well if i were dx'd with ms i'd want that. i said well i like avonex i think. he said that's a great choice for you. we can start on that and see how you tolerate it.

problem is i can't take anything yet because we don't have insurance yet.