Re: Re: copaxone yes/no

[Guest guest]

I'm sorry Dee...

I haven't gotten to my email, except for maybe a couple of

minutes over the weekend.. so I didn't see your original post,

and actually had to go looking for it, because I've got about 83

messages that need reading.. and my email program sorts by date

& time.. with the bottom being the latest.. that's how I ran

across this one first.,..

I don't understand the bubble on your tongue, or the feeling of

being run down.. \

The lumps.. are quite common.. but you can massage/rub them out

after a day or so following the injection.. and you won't run

out of tissue to inject... pretty sure the lumps will go away

without massaging them.. (I massage)... I feel tired/drowsy..

but I feel that way without the Copaxone too..

Did the "run down" feeling only start after you starting taking

the Copaxone... but if you started on the Copaxone right after

the "onset" of symptoms that got you diagnosed.. it could be the

MS and not the Copaxone... -- You could take a drug "holiday"..

for a couple days.. you might notice a difference within a day

or so... or you might go for a week or more.. might take that

long.. I do know that the nurse from Shared Solutions (you could

call them at 1- and talk to a nurse, or you could go

to this website & find a ton of info on it as well:

http://www.sharedsolutions.com/Home.aspx) the nurse there told

me that my feeling the stuff start to work (that's not in the

literature, because it wasn't part of the original study) the

first night.. but sometimes as early as two weeks.. sometime a

month or two.. sometimes no difference felt at all.. I guess my

point here is if you take a drug holiday and the "run down"

feeling goes away.. then you know it's the Copaxone.. and you

could speak with a nurse at the number above about feeling run

down.. I don't have that side effect, if it is one.. so have no

suggestions on how to solve the problem.. the nurse might.. or

possibly one of the peer counselors -- someone else with MS who

has/is on Copaxone..

Now to the question of being "on" some type of therapy.. The

manufacturers have been keeping track of things like..

progression, relapses, and all kinds of things.. even though

they can't "publish" what they know, because it wasn't part of

the "original study" that the manufacturer did to get FDA

approval for their drug..

Most of us in the group, aren't "new" to the MonSter and have

been "dealing" for more than a few years.. Sharon & I are

Secondary Progressive (with me still having relapsing

tendencies).. which means we're gonna keep losing things.. at a

slow but steady pace... I'm not sure how many others, but

suspect there aren't many who are secondary progressive in the

group.. most are still relapsing/remitting..

And I digress -- All the things that the Doctors who specialize

in MS are finding is that being on one of the modifying drugs is

fairly important.. as it prolongs the actual onset in of the

disease in people with "suspected/possible" MS by between 2

& 5 years.. that's an awful lot of years when you think

about it.. When my MS mentor was diagnosed.. in 1983, there

weren't any disease modifying drugs out there.. Copaxone was the

first drug approved, and it wasn't approved until 1997... (loads

of info about the stuff on that URL that I gave you above)..

If you can prolong or extend the time between flares.. that's

important.. even though there can be "silent" flares.. things

you wouldn't really notice if you're not paying very close

attention to every little thing (and most of us don't -- I

didn't realize that I was having cognitive dysfunction until I

attempted to do a long division problem.. 4 times and each time

came up with a different answer -- math logic puzzles used to be

my passion, still are when I can find them.. they just take

longer some days)...

If you find that you absolutely cannot abide the Copaxone and

it's side-effects.. there are the 3 other self administered

drugs.. but they are all interferons (Avonex - interferon

beta1-A, Rebif - interferon beta1-A, Betaseron - interferon

beta1-.. Avonex is once a week, intramuscular. Rebif &

Betaseron are subcutaneous like Copaxone in smaller doses and

three times a week I do believe.. (I didn't try those two)..

Don't remember where I got the statistics on Avonex... but at

least 50% of MSers on Avonex will experience the flu-like

symptoms.. and most of those won't see it stop after 3 months on

the drug, like their literature states that it will.. I didn't..

not even in 4 years of taking the stuff.. If you can handle

flu-like symptoms once a week.. and to be honest.. I think I was

an exception to the rule.. I had the side-effects six out of

seven days.. until I started to pretty much O.D. on Advil to cut

them back to 24-36 hours.. but I still had them, starting about

1 hour after the injection.. for, if I was lucky, 24 hours.. it

was manageable for that 24 hours with the help of 2 Advil every

4 hours -- a bit much still....

After 4 years on Copaxone.. I still get the lumps.. I still get

the welts.. I still get the red/hot spots at the injection site

as well.. Now, I was still walking, though using a cane outside

and around any place outside the house.. I used walls for

balance inside.. I used the electric carts or manual wheelchair

in stores & to doctor's visits (but the doctor's visits were

because of the distance between parking garage & office)..

About two weeks after I started on Copaxone I was able to leave

my cane at home.. used 's arm if there was a distance or

speed involved -- like crossing a crosswalk at the stores, for

balance when walking "quickly".. AND I was still driving and

working and going up and down stairs several times a day at

work.. I fell at the beginning of the flare at the end of March

2009.. and screwed up both of my knees.. at the end of April

2009 was when I KNEW I was having a flare, because that's when

the numbness on my left side started, and kept spreading, from

just under my left breast till it got to the tips of my toes of

the left leg, and from belly button around to spine on the

left.. everything else was fine.. It was the messed up knees

that actually stopped me from moving.. by the time the pain went

away in my left knee I had lost a lot of my mobility.. but only

because of the pain in the knees and I quit exercising because

of the pain (if there isn't somebody else going to "hurt" me to

keep me going.. I didn't have the willpower to "hurt" myself to

keep up with the exercises -- so the loss of mobility... my own

fault)..

Big question here... have you been put on an anti-depressant?

IF I'm not taking mine (and I do periodically stop taking

them).. I feel lousy.. and then I start with the "mood swings"

that I don't notice, but everyone around me does.. So, , who

would tell you that his mama didn't raise no fools.. will only

ask me.. "Are you taking your pills?".. rather than telling me

that I'm being a crank/witch... That's when I know that the mood

swings are back, and that I HAVE to keep taking the

anti-depressant... We don't realize that we are depressed when

we actually are.. The feeling "run down" can be a part of

depression.. and the depression can also be a part of the

grieving process that I spoke about a while back...

BUT.. all of that aside.. every Neurologist I've seen.. even the

meuron.. insisted that I be on an anti-depressant.. and actually

my diagnosing neurologist (who came before the meuron)

prescribed an anti-depressant immediately.. I was on Effexor

even before I was put on the Avonex (Effexor seems to be the

most effective anti-depressant for MSers too -- got that from my

1st neurologist, and then went out and researched it.. cause I

don't believe any doctor is "all-knowing").. I stopped the

Effexor because I couldn't take the Effexor SR (slow release

type deal).. If I took it that way, I could sleep 18 out of 24

hours easily.. and my insurance company wouldn't pay for using

the regular stuff so I could split the dose.. So I switched to

Wellbutrin (hoping that my PCP was right and that I would be

able to stop smoking as a benefit of it as well).. I declined

Paxil and Prozac.. because of the sexual dysfunction it can (and

did) cause (for me).. [figured after my MS Mentor asked

me if I'd noticed a decline in the bedroom yet, and I hadn't, so

he kinda gave me a heads up that eventually the MonSter would

take that pleasure away from me.. I wasn't about to speed up

that process by taking something I already knew would cause me

to have a "no fun" bedroom..]

Okay.... after my novel. I sure hope that I helped clarify some

of the questions in your mind (though I suspect that I probably

didn't). And, that you seriously seriously reconsider the

option of "not taking" anything and see how it goes type thing..

Even if you only stick with an inject-able until the oral

modifying drug is FDA approved.. shouldn't be too long.. till

the studies are complete. It might even be possible for you to

join the study of the new "oral" stuff that Teva has found... it

would be a 50/50 chance if you joined the study (it's

double-blind, so you could end up with the placebo)... You might

also have to change neurologists to get into the study.. I'm not

sure..

This is where you can read the article about the Phase III

studies

http://www.tevapharm.com/pr/2009/pr_823.asp (the 800 number

given here might be able to tell you which neurologists are

participating in the study)

there are also other drugs on the horizon

http://www.msrc.co.uk/index.cfm/fuseaction/show/pageid/1735

that you might want to research as they expect them to be "on

the market" by 2015..

HUGS

|)onna

wow, guess I breached an area I should not have... my apologies~

Dee

------------------------------------

[Guest guest]

I'm sorry Dee...

I haven't gotten to my email, except for maybe a couple of

minutes over the weekend.. so I didn't see your original post,

and actually had to go looking for it, because I've got about 83

messages that need reading.. and my email program sorts by date

& time.. with the bottom being the latest.. that's how I ran

across this one first.,..

I don't understand the bubble on your tongue, or the feeling of

being run down.. \

The lumps.. are quite common.. but you can massage/rub them out

after a day or so following the injection.. and you won't run

out of tissue to inject... pretty sure the lumps will go away

without massaging them.. (I massage)... I feel tired/drowsy..

but I feel that way without the Copaxone too..

Did the "run down" feeling only start after you starting taking

the Copaxone... but if you started on the Copaxone right after

the "onset" of symptoms that got you diagnosed.. it could be the

MS and not the Copaxone... -- You could take a drug "holiday"..

for a couple days.. you might notice a difference within a day

or so... or you might go for a week or more.. might take that

long.. I do know that the nurse from Shared Solutions (you could

call them at 1- and talk to a nurse, or you could go

to this website & find a ton of info on it as well:

http://www.sharedsolutions.com/Home.aspx) the nurse there told

me that my feeling the stuff start to work (that's not in the

literature, because it wasn't part of the original study) the

first night.. but sometimes as early as two weeks.. sometime a

month or two.. sometimes no difference felt at all.. I guess my

point here is if you take a drug holiday and the "run down"

feeling goes away.. then you know it's the Copaxone.. and you

could speak with a nurse at the number above about feeling run

down.. I don't have that side effect, if it is one.. so have no

suggestions on how to solve the problem.. the nurse might.. or

possibly one of the peer counselors -- someone else with MS who

has/is on Copaxone..

Now to the question of being "on" some type of therapy.. The

manufacturers have been keeping track of things like..

progression, relapses, and all kinds of things.. even though

they can't "publish" what they know, because it wasn't part of

the "original study" that the manufacturer did to get FDA

approval for their drug..

Most of us in the group, aren't "new" to the MonSter and have

been "dealing" for more than a few years.. Sharon & I are

Secondary Progressive (with me still having relapsing

tendencies).. which means we're gonna keep losing things.. at a

slow but steady pace... I'm not sure how many others, but

suspect there aren't many who are secondary progressive in the

group.. most are still relapsing/remitting..

And I digress -- All the things that the Doctors who specialize

in MS are finding is that being on one of the modifying drugs is

fairly important.. as it prolongs the actual onset in of the

disease in people with "suspected/possible" MS by between 2

& 5 years.. that's an awful lot of years when you think

about it.. When my MS mentor was diagnosed.. in 1983, there

weren't any disease modifying drugs out there.. Copaxone was the

first drug approved, and it wasn't approved until 1997... (loads

of info about the stuff on that URL that I gave you above)..

If you can prolong or extend the time between flares.. that's

important.. even though there can be "silent" flares.. things

you wouldn't really notice if you're not paying very close

attention to every little thing (and most of us don't -- I

didn't realize that I was having cognitive dysfunction until I

attempted to do a long division problem.. 4 times and each time

came up with a different answer -- math logic puzzles used to be

my passion, still are when I can find them.. they just take

longer some days)...

If you find that you absolutely cannot abide the Copaxone and

it's side-effects.. there are the 3 other self administered

drugs.. but they are all interferons (Avonex - interferon

beta1-A, Rebif - interferon beta1-A, Betaseron - interferon

beta1-.. Avonex is once a week, intramuscular. Rebif &

Betaseron are subcutaneous like Copaxone in smaller doses and

three times a week I do believe.. (I didn't try those two)..

Don't remember where I got the statistics on Avonex... but at

least 50% of MSers on Avonex will experience the flu-like

symptoms.. and most of those won't see it stop after 3 months on

the drug, like their literature states that it will.. I didn't..

not even in 4 years of taking the stuff.. If you can handle

flu-like symptoms once a week.. and to be honest.. I think I was

an exception to the rule.. I had the side-effects six out of

seven days.. until I started to pretty much O.D. on Advil to cut

them back to 24-36 hours.. but I still had them, starting about

1 hour after the injection.. for, if I was lucky, 24 hours.. it

was manageable for that 24 hours with the help of 2 Advil every

4 hours -- a bit much still....

After 4 years on Copaxone.. I still get the lumps.. I still get

the welts.. I still get the red/hot spots at the injection site

as well.. Now, I was still walking, though using a cane outside

and around any place outside the house.. I used walls for

balance inside.. I used the electric carts or manual wheelchair

in stores & to doctor's visits (but the doctor's visits were

because of the distance between parking garage & office)..

About two weeks after I started on Copaxone I was able to leave

my cane at home.. used 's arm if there was a distance or

speed involved -- like crossing a crosswalk at the stores, for

balance when walking "quickly".. AND I was still driving and

working and going up and down stairs several times a day at

work.. I fell at the beginning of the flare at the end of March

2009.. and screwed up both of my knees.. at the end of April

2009 was when I KNEW I was having a flare, because that's when

the numbness on my left side started, and kept spreading, from

just under my left breast till it got to the tips of my toes of

the left leg, and from belly button around to spine on the

left.. everything else was fine.. It was the messed up knees

that actually stopped me from moving.. by the time the pain went

away in my left knee I had lost a lot of my mobility.. but only

because of the pain in the knees and I quit exercising because

of the pain (if there isn't somebody else going to "hurt" me to

keep me going.. I didn't have the willpower to "hurt" myself to

keep up with the exercises -- so the loss of mobility... my own

fault)..

Big question here... have you been put on an anti-depressant?

IF I'm not taking mine (and I do periodically stop taking

them).. I feel lousy.. and then I start with the "mood swings"

that I don't notice, but everyone around me does.. So, , who

would tell you that his mama didn't raise no fools.. will only

ask me.. "Are you taking your pills?".. rather than telling me

that I'm being a crank/witch... That's when I know that the mood

swings are back, and that I HAVE to keep taking the

anti-depressant... We don't realize that we are depressed when

we actually are.. The feeling "run down" can be a part of

depression.. and the depression can also be a part of the

grieving process that I spoke about a while back...

BUT.. all of that aside.. every Neurologist I've seen.. even the

meuron.. insisted that I be on an anti-depressant.. and actually

my diagnosing neurologist (who came before the meuron)

prescribed an anti-depressant immediately.. I was on Effexor

even before I was put on the Avonex (Effexor seems to be the

most effective anti-depressant for MSers too -- got that from my

1st neurologist, and then went out and researched it.. cause I

don't believe any doctor is "all-knowing").. I stopped the

Effexor because I couldn't take the Effexor SR (slow release

type deal).. If I took it that way, I could sleep 18 out of 24

hours easily.. and my insurance company wouldn't pay for using

the regular stuff so I could split the dose.. So I switched to

Wellbutrin (hoping that my PCP was right and that I would be

able to stop smoking as a benefit of it as well).. I declined

Paxil and Prozac.. because of the sexual dysfunction it can (and

did) cause (for me).. [figured after my MS Mentor asked

me if I'd noticed a decline in the bedroom yet, and I hadn't, so

he kinda gave me a heads up that eventually the MonSter would

take that pleasure away from me.. I wasn't about to speed up

that process by taking something I already knew would cause me

to have a "no fun" bedroom..]

Okay.... after my novel. I sure hope that I helped clarify some

of the questions in your mind (though I suspect that I probably

didn't). And, that you seriously seriously reconsider the

option of "not taking" anything and see how it goes type thing..

Even if you only stick with an inject-able until the oral

modifying drug is FDA approved.. shouldn't be too long.. till

the studies are complete. It might even be possible for you to

join the study of the new "oral" stuff that Teva has found... it

would be a 50/50 chance if you joined the study (it's

double-blind, so you could end up with the placebo)... You might

also have to change neurologists to get into the study.. I'm not

sure..

This is where you can read the article about the Phase III

studies

http://www.tevapharm.com/pr/2009/pr_823.asp (the 800 number

given here might be able to tell you which neurologists are

participating in the study)

there are also other drugs on the horizon

http://www.msrc.co.uk/index.cfm/fuseaction/show/pageid/1735

that you might want to research as they expect them to be "on

the market" by 2015..

HUGS

|)onna

wow, guess I breached an area I should not have... my apologies~

Dee

------------------------------------

[Guest guest]

Well, I don't know what anyone else is telling you offlist but I've been on Copaxone for nearly 10 years and the reason I chose it then was because it wouldn't made me feel sick and it never has. Yes, I get the big itchy lumps but they disappear after about week. I isolate my shots to my legs because I used to hate having to be itchy on both my arms and stomach so one itchy area makes it much better. I've never had the side effects you talk about so you might want to mention these reactions to your neurologist. It's a good drug as far my experience has been. I have very few relapses and I enjoy long remissions which allows me to teach full-time with little trouble. Don't get too discouraged with it. I remember starting on it back when and I remember hating the shots, hating the disease, hating the changes and adjustments to my life. It gets better, I promise. Good luck!

Amy

wow, guess I breached an area I should not have... my apologies~Dee

[Guest guest]

Donna, I appreciate your enormous time/effort to respond...figured I'd upset the group with my question and the issue of my lack of disability from it. Now I'm not 100% but most people wouldn't have a clue anything was wrong. I took avonex for 6 years and just couldn't do it anymore. I've been on effexor since the mid 90's and the extended release for about 9 years now since it is suppose to work better for those that suffer from the 'withdrawal syndrome' which I definitely do. I actually had it increased recently when I had whatever it was in the fall go on with my health on top of many other issues which combined just about pushed me over the edge. To top it off I imagine my hormones are starting to be erratic as I am in my mid 40's and the Shaklee supplements for pms and

menopause balance seem to help in those times a bit. I even found a counselor that is very focused so we are slowly getting through those hidden issues and current ones if they are apparent. I've not had a counselor since the first few years of my effexor and I didn't really feel there was a need. The episode in the fall is what brought me back to the neurologist. It was totally unlike my original episode so didn't make the connection...however it did include the ms hug I believe which gives my neuro a little credibility. Apparently my neuro is a big advocate of ms treatment and research. I don't know that much about him really but he was local and I decided to go ahead and make the switch. Avonex was something I finally decided I just couldn't do any longer. Copaxone will likely be one I can tolerate but am being a cry baby about the lymph node flares, mouth bubbles/sores, spasms in my collar/throat which are like someone doing a big fat pinch

(a 5-6 pain level out of 10), and the last few days my face has been hurting in small pulsing pains of about a 3-4 on a scale of 10, the jaw area to each side of my mouth and today just under my cheek bones. The shots themselves are easy, like a bee sting and then a few days of red (itch sometimes) and then just a lump for about a week. Also I think nausea is a side effect, as slight as it is, just before I start dinner prep. I was reading on one site that discusses the copaxone in a scientific but consumer relative manner and it has user reviews. All my symptoms are accounted for except the pain in the jaw/face I think. I did find comfort in the fact that there were people taking it that have much worse side effects they are coping with in order to take the med and still are thankful to be taking it. Also some that didn't have anything except site reactions. Lucky ducks. I also read some that suspected that it left them vulnerable to other

serious illnesses, even cancer. I understand the studies don't show this to be the case but I have to wonder and just wait and see how often I do get sick. When I was on avonex I don't recall having more than maybe 2 colds in the 6 years. It seemed to really do something in that department. With what is going on with the copaxone it has left to to be curious as to what I could be vulnerable to. All in all, I suppose with something so serious I shouldn't play chicken with it because if I make the decision to stop and my immune system attacks something important...there are not likely to be any do-overs. Please forgive my misinterpretation about the lack of response to my question. Figured you all just wanted to bonk me for being such a silly cry baby...which I am but not typically. This change of lifestyle and new limitations go against all my identity and worldview is wrapped up in. In face I have an assignment as to

where my views are derived regarding needing help, being dependent, etc. I haven't a clue but it makes me cry on a dime~ grief, shame, guilt, fear, all things that rush through me like a run away train. Is there a reason most of you type so big? I could increase my font if it is helpful~ Thank you again Donna for responding, I really am glad you're not upset for my questions.Dee

[Guest guest]

thank you Amy, I appreciate your encouragement, I really do. DeeTo: MSersLife Sent: Mon, May 16, 2011 4:10:41 PMSubject: Re: Re: copaxone yes/no

Well, I don't know what anyone else is telling you offlist but I've been on Copaxone for nearly 10 years and the reason I chose it then was because it wouldn't made me feel sick and it never has. Yes, I get the big itchy lumps but they disappear after about week. I isolate my shots to my legs because I used to hate having to be itchy on both my arms and stomach so one itchy area makes it much better. I've never had the side effects you talk about so you might want to mention these reactions to your neurologist. It's a good drug as far my experience has been. I have very few relapses and I enjoy long remissions which allows me to teach full-time with little trouble. Don't get too discouraged with it. I remember starting on it back when and I remember hating the shots, hating the disease, hating the changes and adjustments to my life. It gets better, I promise. Good luck!

Amy

wow, guess I breached an area I should not have... my apologies~Dee

[Guest guest]

Donna you are a talkative gal arent you? I admire people who can outdo me lol. My dogs don't have much conversation either. I use to get to have lots of little visits when I would walk them in groups for about an hour each group, so two hours. Now I've worn my feet to two different problems that can be identified and another that cannot so walks are 20 min at best. These are the last "group" of dogs we'll have, but later might have a newf once we've caught a breath after what will be about 24 years of multiple dogs as the center of life. I have two ragdoll kittens, really enjoying them. Was suppose to be one but he really needed a companion of his own kind and it has been wonderful for him. I'm a

bit slow but think I am understanding the dog conversation/isp thing...you were suppose to ask about ability to browse but asked instead about ability to breed...yes? that is like trying to have a conversation with someone just waking up lol. so what breeds do you have? you may have told me but don't recall. Are any of them 'service dogs'? or just dogs you service...like mine ugh. I've got 3 goldens (talk about dust elephants!) and 2 jack russells, with one down a year ago that made it to almost 18 yrs. Thanks again for the chatter!Dee