what kind(s) of meds do you use?

[Angel@]

hey all,
I was wondering if you want to share the meds you're using to help you deal with the effects of the MS.

I myself use avonex injections. started with it after my second relapse. been on them since okt '06.

for the rest I only use paracetamol when I need it.
ow..and had 3 times prednison (3x1000mg)

greetings
Angela

[ActiveMSers]

I'm on Copaxone. I like the fact there are basically no side effects, except for the daily hassle of injecting yourself. All the DMDs work at about the same level, so Avonex, Betaseron, and Rebif all get the thumbs up, too.

The only supplement I take for MS is fish oil, as there is some slight potential evidence it may be beneficial and the odds of it hurting me (physical or in the wallet) are pretty darn low. The only downside: the occasional fish belch.

For sleep, melatonin. For the colon, a stool softener. People with MS are at a higher risk for colon cancer (e.g., Richard Cohen) due to hard stools. So my neuro said to start taking a softener daily.

I used to think talking about stools was difficult, but when you read about stool samples in a Get Fuzzy cartoon (Bucky called a furniture store asking to see one; they were nonplussed), I've found it can be entertaining as well as educational. Okay, maybe not that entertaining. I do have a strange sense of humor.

[Angel@]

I used to think talking about stools was difficult, but when you read about stool samples in a Get Fuzzy cartoon (Bucky called a furniture store asking to see one; they were nonplussed), I've found it can be entertaining as well as educational. Okay, maybe not that entertaining. I do have a strange sense of humor.
07-13-2008 09:37 PM

loving the humor

I'm ok with the avonex as its "only" once a week and they leave little marks on the body.
wouldn't feel happy with needle marks and maybe sore spots on my legs

girls more ofter then boys have "trouble" going to the toilet so I try eating healthy. whole wheats an plums with yoghurt for breakfast and stuff. seems to to the trick

fish oil isnt a bad idea. good for the brains too, right?

[cochrajk]

I am about to start Copaxone. I take CoQ10 that I think helps with headaches/TN. I also take melatonin for sleep, as well as fish oil, a multi, and calmag supplement on days I feel like taking my vitamins too.

Most days I simply forget (which is a shame because vitamins cost so much money these days...) The fish oil I have learned to take with food...or else very very fishy. Uck!

[ScottK]

I am in a study combining Copaxone and Avonex.

I am pretty sure I am getting Copaxone. I get the general swelling after taking that shot. But I am not sure about the Avonex. I don't get the flu or crummy symptoms others seem to complain about with it. I have to be indifferent about it, because the idea that I am stabbing a 1.5" needle into my thigh muscles once a week with sugar water just doesn't sit right with me.

I need to start taking fish oil again. I used up all the gel capsules I had and have been meaning to buy just the oil. From the numbers I have seen the raw oil has 4x as much punch compared to the gel capsules. And I read good things about Ginkgo Biloba.

[Pat]

Meds

I am not taking any prescription drugs just now. I was told to take the daily shots but knew that I would lapse more than once so opted out. I take the fish oil, melatonin and am now drinking a lot of organic raw milk and eating raw honey - seems to help me, especially the raw milk. I take Aleve when necessary and schedule regular massages. Acupuncture helps too - when I can afford it! Gin and tonic works well!!!

[Angel@]

I am in a study combining Copaxone and Avonex.

ok. hmmm. is that then 3 groups. one with avonex, one with copaxone and one with sugar water? brrr. hope thats its not the last one.

but doesnt copaxone needs to be subcutane? so.. not in the muscle?
love to hear more,
greetings, Angela

[ActiveMSers]

Pat, a gin an tonic? Perfect! One of my many vices. My favorite gin is Martin Miller's from London. It is so good, tonic isn't even needed. Floral, smooth, and worth the $30. Here are some tasting notes.
http://www.oddbins.com/products/prod...ductcode=13200

[ScottK]

ok. hmmm. is that then 3 groups. one with avonex, one with copaxone and one with sugar water? brrr. hope thats its not the last one.

but doesnt copaxone needs to be subcutane? so.. not in the muscle?

The study has three groups: one getting copaxone and placebo, one getting avonex and placebo, and one getting both.

I am simply basing my assumptions on the side-effects people get for each drug.

Yes, you are correct, copaxone is only under the skin, so it is not bad at all, a few stings from time to time.

The avonex is what sucks. You have to put it pretty deep into your leg. They say your shoulder muscles are fair game too, but I have never tried it there. I have had two occasions now when I got into the muscle, it flexed involuntarily. The first time was a little sore, but the second time the contraction didn't let go for a few seconds. That muscle was sore for a few days.

For me personally, I have to relax quite a bit before taking that shot. I usually will rub the leg nice and deep to get the muscles loose and any stress that I have been building up from the day. It has been a little over a year now taking it, so it isn't all that bad, just worse than the copaxone shot by comparison with my preparation method and all.

[ActiveMSers]

The study Scott is on is testing Avonex and Copaxone combined (sponsored by the NIH). So to keep it blind, everyone has to take 8 shots a week.

50% get both drugs, no placebo
25% get just Copaxone and a weekly placebo
25% get just Avonex and a daily placebo

So 50% of the group is taking some sort of placebo and shooting up with sugar water. But at least everyone is on at least some sort of therapy....

[Angel@]

The study Scott is on is testing Avonex and Copaxone combined (sponsored by the NIH). So to keep it blind, everyone has to take 8 shots a week.

OMG..... 8???? I think you are brave!!! very brave. I'm sometimes having trouble with my avonex shot once a week already... 8??? jeezzz
burning a candle indeed that its not the placebo....jeez

I dont mind the avonex shot. try indeed to relax my muscle by sitting on a chair or couch and using a PI (personal injector?) so that I dont have to play darts with the needle. couldnt do with the subcutane for the marks you sometimes get.
already dont like my legs

better as my hands sometimes have little control or strenght

ow well.... if the avonex reduses the amount of relapses with 30% to 40% then I think I should use that. its one of the few things I can do to "stop" the MS.

greetings,
Angela

[ScottK]

I dont mind the avonex shot. try indeed to relax my muscle by sitting on a chair or couch and using a PI (personal injector?) so that I dont have to play darts with the needle.

WTF?!?!

You have some type of auto injector for avonex???

That sounds dangerous to me. The needle being as long as it is, and having to go into the muscle...seems like an accident waiting to happen.

In a strange, F'd-up way, you get use to taking 8 shots. I do my avonex on Tuesdays (easy to remember, Tuesday-twover (sp?), it is strange how you remember things from places such as radio in the '80s, even made me dig up the Def Leppard CD the other day, but I digress....). I always do my shots right before bed. Any swelling from the copaxone is gone by morning. Sometimes I get a hard knot at the injection site, but they are few and far between.

[Angel@]

hi,
lol....see how we worry about differ. things. you getting used to the injections and me not being able to use avonex without the PI.

check out: http://www.personalinjector.com

it will show that its not an accident waiting to happen but very usefull.
I "do' my shot with avonex in the weekend. the day after I really need to do as little as possible so not a good idea going to work with that

good to hear you're not having marks from the copaxone. for how long do you still need to continue with this?
hope you're well,
greetings,
Angela

[ScottK]

Hmmm, interesting...

I am not sure if that buys me anymore advantage at the moment, but I will keep it bookmarked for future reference.

I can see people that are having dexterity or strength problems with their hands it would be a huge help.

When you first mentioned it, I thought it was an auto-injector like the copaxone injector I use. This unit still requires the steps I already take (check for blood, push it in, etc).

One bonus I see with it is the lights. I look like an idiot when I take my avonex shot. I put a headlamp on to see what the heck I am doing. If I was simply using overhead lights, my hands always cast a shadow so I can't see what I am doing. Direct light at the injection site, that is cool.

As far my situation, the study is suppose to last 3 years.

[Angel@]

hi,
when I got the instructions for using the avonex, I was told that you cant really miss the muscle in your leg. hahahaha but maybe that was a nice way of saying that I've got big legs...hahaha

if you devide your upper part of your leg in 4 parts and take the outer upper part...you cant miss..
I've got 3 birth marks just near where I need to inject so one leg is always right

3 years.....jeez.....
greetings,
Angela
Angela