Why did you choose your meds...this is confusing.

Tell us what you are using to treat your MS-- and how you are doing.

Why did you choose your meds...this is confusing.

Postby shaight » Sat Apr 30, 2011 6:46 pm

hello -

i was recently 'not yet' diagnosed with MS. but, it certainly appears to be on the horizon once all my testing is complete. my dr has given me some options on which medication to start taking.

i have read thru all of their marketing info and ended up with more questions than answers. i'm also found myself being quite the cynic over the whole process.

my choices have narrowed to Avonex, Rebif, or Copaxone.

Avonex :

benefits - once a week injection, less neutralizing antibodies than Rebif

drawback - maybe flu, less medicine than Rebif = maybe less effective? they even admit that for the initial year. increased liver enzymes. depression and fatigue.

Rebif :

benefits - more medicine = maybe better results?

drawback - 3 injections per week. flu 3 times a week? increased liver enzymes, more neutralizing antibodies than Avonex. depression and fatigue

Copaxone :

benefits - no liver issues, no depression issues, less flu like symptoms. no neutralizing antibodies.

drawbacks : seven shots per week. initial chest/breathing issues after injection. there is something else, but it escapes me at the moment.

thanks and best of luck to everyone.
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Re: Why did you choose your meds...this is confusing.

Postby NHE » Sun May 01, 2011 2:25 am

Welcome to ThisIsMS. Here are some additional parameters to consider...

shaight wrote:i was recently 'not yet' diagnosed with MS. but, it certainly appears to be on the horizon once all my testing is complete. my dr has given me some options on which medication to start taking.


What kind of testing have you been through?

i have read thru all of their marketing info and ended up with more questions than answers. i'm also found myself being quite the cynic over the whole process.


The marketing info is pretty glossed over by the pharmas. Get a medical dictionary, either from a library or a used book store, and comb through the prescribing information pamphlets. You will learn much about the medications by doing so.

my choices have narrowed to Avonex, Rebif, or Copaxone.

Avonex :

benefits - once a week injection, less neutralizing antibodies than Rebif

drawback - maybe flu, less medicine than Rebif = maybe less effective? they even admit that for the initial year. increased liver enzymes. depression and fatigue.


Intramuscular injection therefore none to minimal injection site reactions (perhaps some light bruising every once and a while). It's a big needle, but if you stick it in the right spot in your leg, then it's not too bad.

Rebif :

benefits - more medicine = maybe better results?

drawback - 3 injections per week. flu 3 times a week? increased liver enzymes, more neutralizing antibodies than Avonex. depression and fatigue


Subcutaneous injection therefore increased likelihood of injection site reactions often described as "injection site tissue necrosis."

Copaxone :

benefits - no liver issues, no depression issues, less flu like symptoms. no neutralizing antibodies.

drawbacks : seven shots per week. initial chest/breathing issues after injection. there is something else, but it escapes me at the moment.


Lipoatrophy. This is where the fatty tissue layer just under your skin dies off. It makes the skin look dented like a deflating balloon.

thanks and best of luck to everyone.


I'm not a doctor and you should do your own research. However, I will offer my opinion. Wait until you have a firm diagnosis before starting one of the disease modifying drugs. In the meantime, give serious consideration to diet and lifestyle changes that will reduce your body's tendency towards inflammation. For example, eliminate trans fat, reduce saturated fat and try some of the beneficial supplements discussed on the Diet and Natural Approach forums. A brief list might include omega-3 fatty acids from fish oil, turmeric, green tea, vitamin D3, zinc, magnesium, r-lipoic acid as well as others. If you smoke, stop. It's been found to be associated with increased disease progression. If you drink, then minimize how much you drink. Also consider getting your blood tested for various parameters like vitamin D3 etc. This will give you a baseline so you have some idea of how much to supplement.

Lastly, there has been a growing hypothesis that MS may be a disease with chronic immune system activation in genetically susceptible individuals, but perhaps not one of autoimmune etiology. This hypothesis centers around research over the years that has demonstrated reduced cerebral blood perfusion in MS patients. Recent developments over the last few years have been focused on Chronic Cerebrospinal Venous Insufficiency (CCSVI). This may be something that you wish to look into and learn about. Treatment for CCSVI involves balloon angioplasty of the jugular and/or azygous veins. The treatment is still experimental and the procedure is continually evolving with some very committed doctors looking into how to maximize benefit while minimizing its associated risks such as damage to the veins and potential blood clotting. However, much like my statement about the disease modifying drugs, you may wish to just learn what you can about it for now.

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Postby shaight » Sun May 01, 2011 3:53 am

thank you for your response.

i have had an MRI of the brain and upper spine. i have 4-5 lesions and one fairly large and active as it showed up with the dye injection as white. my vision was impaired (double vision) in one eye which seems to have gone away on it's own after about two weeks.

i am returning shortly for an MRI of my lower (thoracic spine) and they are going to do a spinal. i am also going to have an in-depth eye exam...not too sure what they called that exact procedure.

my diet has always been pretty good. i was a vegetarian for 10+ years and i continue to eat healthy. i drink casually, but have stopped since this issue arose. lack of Vitamin D is a concern and i've been on supplements for a short time now...actually, before any of these MS signs occurred.

i have been scanning through the posts on this site and found the CCSVI extremely interesting.

i should add that my sister was diagnosed with MS six years ago and is currently using Avonex.

i am attending the Lahey Clinic for treatment in MA.
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Postby jimmylegs » Sun May 01, 2011 5:50 am

hi shaight

i was a strict vegan for 15 years before getting diagnosed. i learned which nutrients were associated with the kind of neuropathy i had, and was able to draw very straight lines between those symptoms, and things i did not eat and by association, nutrients i was probably missing. suspicions were confirmed with a variety of blood tests.

IIMA, what are your symptoms? if you are interested in looking at diet in comparison, tell me (by private msg if you prefer) what portion sizes and foods and beverages you consume over two typical weekdays and one typical weekend day, i can review for gaps.

i am not a pro i just have a science background and have spent 5 years head down in the peer-reviewed research on nutrition in health and disease.

key nutrients that affect ms include:

vitamin D3 - usually found in fish or supplemented dairy. a bit in eggs.

vitamin B12 - found in animal foods

zinc - oysters are the densest most bioavailable source, generally it's in red meat.

magnesium - swiss chard, spinach (1c boiled provides ~150mg - that's a third of recommended values for one day)

vitamin E - also in the chard and spinach - provides about a quarter of what you should get each day

selenium - healthiest sources are liver, fish like snapper, cod and halibut (although they say you can get the day's requirement from 2 brazil nuts)
brazil nuts do not appear on whfoods.com as candidates for meeting daily selenium needs.. 10oz raw crimini mushrooms per day would meet recommended daily amounts.

long chain omega 3 fatty acids - fish, fish and fish:

http://onlinelibrary.wiley.com/doi/10.1 ... 033.x/full
Means of Delivering Recommended Levels of Long Chain n-3 Polyunsaturated Fatty Acids in Human Diets

below in my signature you might be interested in clicking through to some of those links. i don't necessarily agree with everything posted at all of them, but it's pretty good foundational information. for example i don't agree with the need to cut out dairy, because i had no dairy in my diet at all and i still got ms. it's more complicated than just cutting out food groups. you need to know what's right for you as an individual.

happy reading :)
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Postby lyndacarol » Sun May 01, 2011 9:19 am

Another good source of vitamin D3 is mushrooms, specifically shiitake mushrooms.
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Postby jimmylegs » Sun May 01, 2011 9:33 am

true, but it would be vitamin d2 in shiitakes, and then your body would do some work to convert it into d3 form.

3.5oz shitaake provides ~28 mcg D2, that's ~1100 IU.

D2 is about half as effective as D3, so 3.5 oz shiitake would be equivalent to 650 IU D3.
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Postby shaight » Sun May 01, 2011 5:29 pm

jimmylegs,

am i reading your post to say that you are not on any prescribed meds?

my symptoms have been some heat on the fight side of my abdomen that was triggered by looking straight down or down to the right. i now feel it as a constant after exercising. it lasts about 5-10 minutes. the other symptom was my eye which i had mentioned above. beyond that i have been slightly dizzy which i believe was due to my eye issue. both have pretty much gone away at this time.

i'm sure i have some holes in my diet as i've never really been concerned about it in general. i do eat fish a couple times a week and we eat a lot of spinach...i cannot get enough of that!

my weekday meals are the same...boring, but i've always looked at it as fuel. thank goodness my wife likes to cook! for breakfast i have a whole wheat bagel with natural peanutbutter and coffee. lunch is a tofu pup in a whole wheat wrap, no fat yogurt with blueberries and some bare naked granola. then i have a banana, apple, or an orange. then i usually but not always will have a granola bar or two. depends how far i run or mtn bike at lunch.

dinner is random, but very healthy because my wife cooks. we eat a lot of mexican...black beans, rice, veggies, cheese. Also, fish, pasta, chicken, and rarely red meat. burgers on the grill. always a salad and veggies on the side.

thanks
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Postby jimmylegs » Sun May 01, 2011 7:45 pm

you're right, no ms prescription meds here.

the heat thing when you look down sounds like a clinical indicator of an active lesion known as l'hermitte's sign.

even if boring, you are right food IS fuel - when we get sick it's time to make sure we're using the right fuel for our vehicles :)

bagel with peanut butter sounds like complete protein, but it's an inflammatory meal that drains zinc due to wheat gluten consumption.

tofu pup in whole wheat wrap is inflammatory overall, i suspect negligible nutrition in the dog but plenty of sodium, another zinc drain from the wheat in the wrap.

i eat yog berries and granola almost every day too. yum! it's a mildly inflammatory meal but good nutrition other than potential issues with the oats. i eat regular yog not light, to ensure absorption of fat soluble nutrients. the oats in granola have phytates which bind up any zinc so you don't get the best absorption.

fruit is nutritious but often oddly inflammatory. i guess it's just due to the natural sugars.

granola bars are good but moderately inflammatory. again, oats-phytates-zinc drain.

i wuv mexican food. black beans rice and veggies and cheese are great. complete protein, but there probably is not much zinc in that meal, and black beans have phytates which could bring zinc absorption down further still.

fish and chicken are great. fish in particular can be extremely anti-inflammatory. red meat is an important source of zinc though. or if you like oysters.. they're excellent (i don't - i'm just saying they're excellent sources of zinc hehe)

salad and veg on the side are fantastic. that's where most of your anti-inflammatory power comes in. a packed cup of boiled spinach is strongly anti-inflammatory. kale is also moderately anti-inflammatory. on the other hand, spinach has phytates too and you know what that means.

pasta if made with gluten grains can also reduce your zinc absorption.

i have been pretty focused on zinc here but there are other things to look at too. another time perhaps :)

ttfn!
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Postby shaight » Sun May 01, 2011 8:23 pm

very interesting.

my wife's first reaction was to change our diet and she did some initial research. we then met with a Dr at MGH in Boston and another at Lahey. when the question of diet was posed they both had the same answer...i'm sure you know what it was :lol: they are scientists...

i promised myself that i would make a decision today on what route to proceed down. so far i have failed. the meds appear absolutely horrible to me. i cannot be selfish either as i have my children and wife to think about...a decision must be made. i can always be altered down the road.

best of luck!
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Postby jimmylegs » Sun May 01, 2011 8:27 pm

and to you.
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Postby shaight » Mon May 02, 2011 6:29 am

jimmylegs wrote:and to you.


i just found out that you are a women! would have never guessed by your name! the fact that it's from a seinfield episode is just classic!

this thread has gone way off track, but that doesn't really matter...to me anyway.

the diet to control inflammation is something i'm not totally understanding. i'm sure i will move on to another thread (when i find it) to understand more. on the surface its just seems like it would target the effect, not the cause. granted, it appears that is the only solution at this point with the possible exception of stem cell research and CCSVI.

there sure are a lof of new acronyms, terms, and words for me in the past few weeks. i'm having a hell of a time remembering it all. :D
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Postby jimmylegs » Mon May 02, 2011 7:16 am

hey there shaight. glad you like my name joke :)

anyway yes this is not helping you choose a drug, but i wanted to make sure you knew there's more you can do above and beyond the meds.

i had to say something more once you mentioned the vegetarian history. vegetarians and vegans are at risk of nutrient deficiencies seen in ms patients.

also just so ya know, it's not all about anti-inflammatory food (although it's important to be balanced). IMHO it's about nutrient levels to support all the tiny interactions in the body that make us healthy.

in the early days just after dx, i used to hang on my neuro's every word. i had chosen rebif, but i was reading so hard that by the time the kit came i had read myself out of taking drugs. i got some flak for that from the fam but it's all good.

that said it's each individual's choice and one day i may wish i had taken some sort of pharma product. just wanted you to know about the veg thing.

if you choose to learn about the nutrition aspects of this illness, there are automatic signature links below, and i have a nutrition topic in the regimens section.

feel free to ask me any foodie questions. i don't have much to offer on the drugs, except i know whether or not the drug depletes or interacts in some way with nutrients.

all the best :) i'm here if you need.
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Re: Why did you choose your meds...this is confusing.

Postby cat67 » Thu Sep 29, 2011 9:37 pm

I know my message is sort of long. I want to give you as much info to help you, so you don't have to crazy trying do decide on meds, etc... You are so right which meds to use is confusing, most of them don't really do much contray to what the drug companies say and doctors. You have to keep in mind these drugs have been developed not with you per say in mind or your health, etc... Developed so the drug companies, doctors(not all), and other companies profit off you missery, welcome to a capitalistic society!
I'm not just blowing off steam, I haven't learned alot since diagnosed with ms 3 yrs. ago. I tried the copaxone route, etc. not for me. My ms is bad enough without adding more side effects to it.
These drugs claim to slow down the progression, several accredited studies say a little different, I won't go into it.
What I have learned about treatment of ms that is helpful for slowing down progression of it and some studies have reported even stopping the progression of ms.
So, my (learned the hardway)advice to have magnesium(i take one), vit d(right now I take 10,000ui a day to raise my blood level up to 125.(level recommmended for anyone with ms. So get your neurologist or GP to test your vitamin d level in your blood. If no one will let you get your blood tested, take 10,000ui a day, this is safe amount it the body. Take vit c also everyday.
Take b13 too, they can test your blood for this level too.
This info has taken me 3 years to find out. When you have ms you just basically have to figure out most things yourself,I don't know how things got to be this way, but it really sucks!
So, one other thing you need to know, you might think I'm crazy, but I have done alot of research at the university about the use of cannabis(marjuana). It reduces spatasity in ms, also proven the reduce relapses. Accredited studies with mice and rats have proven it to reduce relapses, slow down progression of ms and in some of the mice it stopped disease progresssion.
So, I'm not taking any of the prescribed meds for ms. I'm vaporizing marijuana and making sure vit d and b13 at right levels. You only need a little of it each day.
There is more things out there benificial for ms and if you want to take the preferred meds for it, that is totally your choice, just thought you would want to know there are alternatives out there.
I know it's a pain in the ass, but before you take any of the doctor prescribed meds for ms, research, google the med on line, find case studies on the meds, go to ms online groups, find out all you can about the meds before you take anything.
I hope this will help you and not confuse you, I know in the beginning ms diagnoses is so overwhelming.
Forgot to mention earlier about salmon oil, it has omega 3 in it. I take two a day, with my vitamin d pills because the fatty acids(healthy for you) help the body absorb the vitamin d, without the fatty acids the vit d doesn't get absorbed, and the body just flushes it out.
Another things, google about hormones and ms, teach you about how hormone levels play a role in developing ms and also on the progression of the disease.
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Re: Why did you choose your meds...this is confusing.

Postby TrippleL » Wed Oct 05, 2011 6:49 pm

I chose Copaxone. I was diagnosed at 31 and would like to have a child. The class of drug would allow me to do so. The side effects seemed low and though I have only been diagnosed since FEB I think it is easy to get into a nightly routine of administering the shots.

Because of the sight reactions I had to buy my first "old lady bathing suit" halter top and skirt. It hid the leg bruising and site welts that look like bee stings.

All in all it seemed like the lowest form and I would rather start low and work up if needed.

I also got a personal trainer. She helped me go from using a cane to running 2mi is 15min in 3 months. (Im in the Army..for now) Setting a post dx goal and reaching it was the best!

Friends=meds :) after the thought that I have a disease FOR-EV-ER sunk in I needed them to reel me back to reality.

Think I rambled on a bit but just wanted to say its a combination of medicine, strength training, and emotional support
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Re: Why did you choose your meds...this is confusing.

Postby MarkLavelle » Thu Dec 22, 2011 2:12 pm

Until you're diagnosed *and* convinced of it (2nd opinion, reading), I would concentrate on living healthy (food, exercise).

If/when you have a positive diagnosis, it still doesn't mean you have to start one of those meds. Experienced neuro docs will have opinions about the likely progression of your particular case based on your symptom history & MRIs, and you will have your opinions (and fears) about it. Maybe you don't think you'll have any more attacks or that they'll have less-than-debilitating symptoms. But whatever you choose (including doing nothing) will be a crap shoot.

A friend was diagnosed in the mid-90s after two episodes of optic neuritis. She declined to go on one of the interferon drugs (didn't think the side effects were worth a merely potential benefit) and hasn't had a single attack of any kind since.

OTOH, I was diagnosed in March and started Copaxone this month. I don't want to risk the next attack being a serious hit on my quality of life. Even though my neuro has called it one of the mildest cases he's seen (mainly paresthesia, and only 2-3 lesions since the first [11/2009]), I'm just not the gambling type (and I'm terrified of ever losing the ability to make music).

I didn't exactly choose Copaxone. My neuro picked it because it's the only one that doesn't suppress the immune system, and my system is already 'compromised' by chemo & radiation from a bout with cancer in 1996. Except for the post-injection stinging (usually just a few minutes) I haven't had any adverse reactions.

Best of luck,
Mark

RRMS dx 3/3/11; Copaxone since 12/1/11
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