Author: Sorting Last Post on Top ↓ Message:
2ABBYNORMAL's Photo 2ABBYNORMAL Posts: 4,692
9/21/13 10:37 P

My SparkPage
Send Private Message
Reply
I haven't posted here in awhile but after reading the posts I am adding my 2 cents worth.
I have been using Coxapone for 14 yrs. this next January.
I do not do my arms or legs. The front of my legs started caving in and I can't reach the back of my arms. I refuse to have my husband help me with that anymore. In fact, I was rotating injections with just my hips for 8 months, but now have started rotating with the stomach again.
I ice the area I'm going to inject with a bag of frozen vegetables. Just a little to keep the sting off and it works for me. I do use the alcohol wipe just to disinfect the small area. I don't bother letting that dry although they say you should. I occasionally bleed when I give myself the shot so I have a tissue handy just in case.
I have called Shared Solutions (Copaxone) in the past with questions and have received nothing but the best of help. You can call them at 1-800-887-8100 and their website is www.sharedsolutions.com.
Also, when I mentioned to them that I ice the area they said that some people use warm compresses. She gave me the number of the manufacturer of Teva Pharmaceuticals USA to get warm compressors to try. Well, I called them and they sent me two, but I haven't tried them yet. These are free of charge.
I will not change from Copaxone to Tysabri unless Copaxone seems to stop working.
The Tysabri seems to me to be too new to start experimenting with and I'm quite happy with the Copazone.
I hope everyone is well.
Anne

What you call INSANITY, I call INSPIRATION!!!


Total SparkPoints: 75,109
 
60,000
64,999
69,999
74,999
79,999
SparkPoints Level 18
KRITTEN1's Photo KRITTEN1 SparkPoints: (56,868)
Fitness Minutes: (13,166)
Posts: 3,033
7/24/13 4:57 P

My SparkPage
Send Private Message
Reply
Thanks! It helps. It's just hard for me to think about having to give myself shots again.

DAWNUH's Photo DAWNUH Posts: 6,426
7/24/13 12:59 A

My SparkPage
Send Private Message
Reply
I was on Copaxone for about a year, and I have some Good News for you! emoticon
You don't have to give yourself injections in the tummy area At All. A friend of mine who also has MS let me know that she simply refuses to give herself shot in the stomach. My overall reactions to the shots were simple rash-type spots where I gave them to myself. Putting a cooling pad on those spots helped me out a lot. Over time, I didn't have any of those reactions from Copaxone.
I've read recently that Ozzy Osborne's son who recently came out as having MS chose to be on Copaxone.

I hope it works well for you! emoticon

Edited by: DAWNUH at: 7/24/2013 (00:59)
What I am looking for is not out there; it is in me.

-Helen Keller

KRITTEN1's Photo KRITTEN1 SparkPoints: (56,868)
Fitness Minutes: (13,166)
Posts: 3,033
7/23/13 9:35 P

My SparkPage
Send Private Message
Reply
Hi! I was on betaseron for years. I ached, slept way too much, had no energy. I thought most of that was the MS. I lost my insurance and stopped taking the med. Honestly, I think I would have quit taking it anyway. After I had been off of it for a while I realized that I felt so much better. I also realized that I had been depressed. I now have insurance again and I have a new doctor. He wants me to start on Copaxone. The thought of having to give myself shots again makes me want to cry. I had a hard time doing every other day that I don't want to think about a shot every day. I have large scars on my stomach from when I had exploratory surgery and they gave me a temporary ileostomy. I lose about 35% of the area on my stomach that I can give my shots. I go back to my neurologist in August. I would rather take a pill, but I don't know if my insurance will cover it. If it doesn't, then I will try Copaxone. Any help or advice would be welcome! thanks!

TAZMA1's Photo TAZMA1 Posts: 53
9/18/12 7:03 P

My SparkPage
Send Private Message
Reply
I've been on Copaxone for 10yrs and on my last visit to the Neuro, he stated the longer your on it, the better it works. Up to 80% reduction in progression.

 current weight: 244.0 
 
244
220.5
197
173.5
150
PATTIMYSELF's Photo PATTIMYSELF SparkPoints: (96)
Fitness Minutes: (0)
Posts: 16
9/15/12 9:44 A

My SparkPage
Send Private Message
Reply
Just wanted you all to know that I do NOT weigh 203kg I weigh 92kb and have about 30lbs to lose. Boy was this ever wrong and there is no way I can change it because it won't let me

With Love
Patti xxx
American by birth and MOUTH
but British in every other way
DAWNUH's Photo DAWNUH Posts: 6,426
9/14/12 10:35 P

My SparkPage
Send Private Message
Reply
I am currently taking Copaxone and have had few problems with it. My neurologist group is very supportive of and interested in me taking Tysabri. The statistics given to me is that Copaxone works well for many people and can be 30% effective on reducing lesions in the brain and Tysabri is 70% effective for the same thing. Very effective and good for us! I will stay on Copaxone for approximately 3 more months and then transfer over to Tysabri. Yay! emoticon

What I am looking for is not out there; it is in me.

-Helen Keller

PATTIMYSELF's Photo PATTIMYSELF SparkPoints: (96)
Fitness Minutes: (0)
Posts: 16
9/13/12 1:40 P

My SparkPage
Send Private Message
Reply
Gosh thanks guys. I really really (two reallys means a LOT) appreciate your writing about Copaxone. I thought maybe the wipe thingies were to stop the bee stings but apparently not. So I won't bother. I hope your MS is behaving itself more than I'm dieting that's for sure. I have two blogs non-MS related. I quilt and XStitch too. Well I had to find things to do sitting down.

Thanks again

Patricia x

With Love
Patti xxx
American by birth and MOUTH
but British in every other way
JEN2009's Photo JEN2009 Posts: 256
9/13/12 5:54 A

My SparkPage
Send Private Message
Reply
Hi Patti,

I am in the UK, but I was diagnosed and started treatment in the US. The US Copaxone nurse insisted I needed the alcohol wipes; I've since stopped using them because I've had several NHS MS nurses tell me I don't need them so long as my skin is clean. The bee sting reaction, as others have said, is normal. More serious reactions occasionally occur (I've been using Copaxone since 2007 and it's only happened once)--if you have a sore, almost blistered area that lasts for more than a day, call your MS nurse (for those in the US, I have no idea who you should call) because you may need a new autoject pen.
J. xx

 current weight: 217.4 
 
225
211.25
197.5
183.75
170
ESMERELDA1220's Photo ESMERELDA1220 Posts: 3,214
9/12/12 6:43 P

My SparkPage
Send Private Message
Reply
I'm on Copaxone and the bee sting is a normal reaction. It takes about 6 months to see results from Copaxone...you need to have clean skin...alcohol wipes, in my opinion, are a joke....that's just an opinion from experience...

Ezz woman

Strong yet fragile...
To sin by silence makes cowards of men...Abraham Lincoln

Give unto others as you would have others give unto you...

There is a reason and a purpose to everything in life...


Total SparkPoints: 54,823
 
50,000
52,499
54,999
57,499
59,999
SparkPoints Level 17
PATTIMYSELF's Photo PATTIMYSELF SparkPoints: (96)
Fitness Minutes: (0)
Posts: 16
9/12/12 5:11 P

My SparkPage
Send Private Message
Reply
Tysabri is next if my Neurologist thinks there is something wrong with the copaxone. But I know very little about it, sorry.

Edited by: PATTIMYSELF at: 9/12/2012 (17:12)
With Love
Patti xxx
American by birth and MOUTH
but British in every other way
PATTIMYSELF's Photo PATTIMYSELF SparkPoints: (96)
Fitness Minutes: (0)
Posts: 16
9/12/12 5:10 P

My SparkPage
Send Private Message
Reply
Hi JEN2009,

Are you in the UK? Nobody recommended alcohol wipes how did you know to use them and do they make any difference? I get like bee stings after I inject. Do you get them? I've been on Copaxone for about 4 months - it's the third drug I've been on and so far all is good apart from the bee stings which is nothing compared to my reaction to Avonex and Rebif.

Patti xxx

Edited by: PATTIMYSELF at: 9/12/2012 (17:12)
With Love
Patti xxx
American by birth and MOUTH
but British in every other way
KNITTENMOM's Photo KNITTENMOM Posts: 29
8/28/12 9:53 A

My SparkPage
Send Private Message
Reply
Does anyyone use Tysabri?? Thanks for any help!!!

 current weight: 202.0 
 
222
211.5
201
190.5
180
MELLY3183's Photo MELLY3183 Posts: 1,955
2/18/12 4:52 P

My SparkPage
Send Private Message
Reply
That stinks about the cost program not being available in Mass. I think they should do it nationwide..

I use the alcohol swipes because the copaxone nurse told me to swab the area and then swab the autoject afterwards. I too get a huge shipment but not monthly. It's nice but they also come with the medicine from my pharmacy so I just have excess laying around.

"You have to believe in yourself when no one else does. That's what makes you a winner." - Venus Williams

"I am who I am today because of the choices I made yesterday." -Eleanor Roosevelt


 Pounds lost: 17.4 
 
0
20
40
60
80
ESMERELDA1220's Photo ESMERELDA1220 Posts: 3,214
6/23/11 2:39 P

My SparkPage
Send Private Message
Reply
Yes, always make sure the alcohol is dry and if you are going to use the swab...use it with a mild scrubbing action....

Ezz woman

Strong yet fragile...
To sin by silence makes cowards of men...Abraham Lincoln

Give unto others as you would have others give unto you...

There is a reason and a purpose to everything in life...


Total SparkPoints: 54,823
 
50,000
52,499
54,999
57,499
59,999
SparkPoints Level 17
NYCKI1's Photo NYCKI1 Posts: 140
6/23/11 11:41 A

My SparkPage
Reply
I looked into the financial help but it is not available to Massachusetts residents. That is one of the only 2 reasons to not get it. :(

I do use alcohol swabs because my doc said ti is best to. But I have to wait til my skin dries before injecting. :)

Nycki :)

Need some help reaching our fundraising goal. Every little bit helps. Please pass on the link to anyone or any business that may be interested in helping. Looking forward to reaching our fundraising goal and gaining my independence with a service dog. New future - new possibilities


neads.org/page.aspx?pid=601

Pampered chef fundraising page for our service dog through NEADS
www.pamperedchef.biz/karenduby


 current weight: 253.0 
 
253
227.25
201.5
175.75
150
2FINISH!'s Photo 2FINISH! SparkPoints: (21,152)
Fitness Minutes: (32,676)
Posts: 319
6/23/11 11:38 A

My SparkPage
Send Private Message
Reply
Thanks guys! I talked to SC, SS, and the pharmacy and I think we got it all sorted out now. I will have to miss a few doses but its ok, Iím actually looking forward to the break! LOL

Thanks again!




 current weight: 138.0 
 
185
170
155
140
125
JEN2009's Photo JEN2009 Posts: 256
6/23/11 11:14 A

My SparkPage
Send Private Message
Reply
The only way you'll know if you need to re-apply is to call and ask. In the States I was told to never miss an injection; in the UK they encourage short medicine vacations (2-3 weeks) for patients who are stressed by daily injections--I'm not stressed by the injections, but that's what they told me when there was a one-week delay in getting my medication when I moved from one Trust to another.

I hope your husband enjoys his new job; good luck sorting out your medication.

 current weight: 217.4 
 
225
211.25
197.5
183.75
170
ESMERELDA1220's Photo ESMERELDA1220 Posts: 3,214
6/23/11 10:20 A

My SparkPage
Send Private Message
Reply
I agree with Amanda..call them...they don't want you to be without your medicine...

Ezz woman

Strong yet fragile...
To sin by silence makes cowards of men...Abraham Lincoln

Give unto others as you would have others give unto you...

There is a reason and a purpose to everything in life...


Total SparkPoints: 54,823
 
50,000
52,499
54,999
57,499
59,999
SparkPoints Level 17
NUGGETTEMOM's Photo NUGGETTEMOM SparkPoints: (5,887)
Fitness Minutes: (408)
Posts: 116
6/23/11 10:17 A

My SparkPage
Send Private Message
Reply
I would call Shared Solutions/Commitment and ask them to be safe. They seem to be very helpful and understanding. emoticon

Amanda
2FINISH!'s Photo 2FINISH! SparkPoints: (21,152)
Fitness Minutes: (32,676)
Posts: 319
6/23/11 9:56 A

My SparkPage
Send Private Message
Reply
So if you change insurances, do you need to reapply for the program again? My hubby changed jobs and heís new insurance doesnít pick up till the first. The CVS people called this morning as its time to order next monthís supply but Iím going to wait till we have coverage before ordering more. Iíll only be going a few days without the shot so I donít think thatís a big deal, Iím just wondering if Iíll have to reapply or not.

Wishing you all good health and speedy recoveries from your surgeries!



 current weight: 138.0 
 
185
170
155
140
125
ESMERELDA1220's Photo ESMERELDA1220 Posts: 3,214
6/19/11 12:17 P

My SparkPage
Send Private Message
Reply
Ahhhhhaaaahh! Didn't know that.....Well, the thing with the alcohol swabs is to clean really. Could you imagine someone not bathing for a week and injecting themselves...ugh! Its a standard of practice...but when you actually are a nurse in the hospital you are not going to take two minutes to scrub the area with an alcohol swab...Now if I was putting in an IV that's a different story as I'm going directly into the venous system and can nasty bugs in there...I always took my time with that. Waited until the alcohol dried so it didn't sting. I wanted the IV to be painless as possible...I'm proud to say I got lots of compliments for my IV skills...but I cannot teach any of this back...I could do some work like that, even with my cognative problems, but I'm not reliable for work. One day is good and one day is bad...I could make CD's...but who would buy them and who would let me stick them.... emoticon Oh and I dropped my license anyway....we live comfortably as possible...why work...40 years is enough...(but I did like teaching) sigh........

Ezz woman

Strong yet fragile...
To sin by silence makes cowards of men...Abraham Lincoln

Give unto others as you would have others give unto you...

There is a reason and a purpose to everything in life...


Total SparkPoints: 54,823
 
50,000
52,499
54,999
57,499
59,999
SparkPoints Level 17
NUGGETTEMOM's Photo NUGGETTEMOM SparkPoints: (5,887)
Fitness Minutes: (408)
Posts: 116
6/19/11 12:07 P

My SparkPage
Send Private Message
Reply
Why are we supposed to use the alcohol swabs if it doesn't kill the germs? It seems pointless then... LOL. Shared Solutions is Copaxone's patient support program (I got all kinds of stuff from them before I even started taking Copaxone) and Shared Commitment is their medication assistance program to help you pay for it. It's really annoying that they made the names that similar. I couldn't figure out what the heck the nurse I was talking to was smoking when they were saying Commitment instead of Solutions until someone explained it to me.

Amanda
JEN2009's Photo JEN2009 Posts: 256
6/19/11 12:01 P

My SparkPage
Send Private Message
Reply
In the UK they don't recommend the alcohol swabs--they say they won't hurt you if you use them, but there's no real reason to use them; if you want them you buy them from a pharmacist (they're kept behind the counter--who knew alcohol wipes could be dangerous?).

Esmerelda1220--good luck with the recovery from your foot surgery; I had knee surgery on Monday and I'm really not looking forward to tomorrow's physio therapy appiontment.

 current weight: 217.4 
 
225
211.25
197.5
183.75
170
ESMERELDA1220's Photo ESMERELDA1220 Posts: 3,214
6/19/11 11:52 A

My SparkPage
Send Private Message
Reply
I thought it was called Shared Solutions...That is what it says on my magnet...any way they are good and I get a three months supply via CVS/Caremark and they gave me assistance monetarily...Thank goodness...
And I hate to say this, but I don't use alcohol swabs...I just inject. I'm allergic to alcohol and if you want to do it really right with an alcohol swab you have to use friction and do it for 2 minutes...I don't recommend my method...that's just me....doing it since I've been on the stuff and no infections...alcohol doesn't kill the germs...learned this long ago as a nurse....
Thank goodness not doing anything medical any longer...Now I'm out of commission with my foot operation...about 4 weeks and I'm at week #2...resting, knitting and the computer....

Ezz woman

Strong yet fragile...
To sin by silence makes cowards of men...Abraham Lincoln

Give unto others as you would have others give unto you...

There is a reason and a purpose to everything in life...


Total SparkPoints: 54,823
 
50,000
52,499
54,999
57,499
59,999
SparkPoints Level 17
NUGGETTEMOM's Photo NUGGETTEMOM SparkPoints: (5,887)
Fitness Minutes: (408)
Posts: 116
6/19/11 10:29 A

My SparkPage
Send Private Message
Reply
I believe Copaxone's program is called Shared Commitment. I've been on that almost since I started taking Copaxone (I just started in November). My pharmacy is the Medco (Medical Mutual of Ohio) specialty one. They're very nice, but if they send me one more box of alcohol swabs I will SCREAM! It's very nice of them, but I now have thousands of swabs because they've sent me another box almost every month. LOL. I only need about 30! The fact that they call me to refill my prescription every month is pretty sweet too.

Amanda
MELLY3183's Photo MELLY3183 Posts: 1,955
6/16/11 8:59 A

My SparkPage
Send Private Message
Reply
thanks for that information Jen. I was going through my insurance at work so I was paying that copayment. I'll look into the NORD.

Have a great day!

"You have to believe in yourself when no one else does. That's what makes you a winner." - Venus Williams

"I am who I am today because of the choices I made yesterday." -Eleanor Roosevelt


 Pounds lost: 17.4 
 
0
20
40
60
80
JEN2009's Photo JEN2009 Posts: 256
6/16/11 6:46 A

My SparkPage
Send Private Message
Reply
If anyone on Copaxone is uninsured/under insured (my insurance would only pay $3000/year for drugs) as I was when I lived in the States (and was first diagnosed), if you meet the financial requirements NORD (National Organisation for Rare Disorders) will pay for your meds--and deliver them to you quarterly. Just google NORD and you'll find their website. I learned of it through Shared Solutions; I hope they're still directing people to organisations that can help.

With NORD the financial requirements are strict; I was a grad student living on next to nothing, so I qualified. If my husband and I had married and stayed in the US we wouldn't have qualified because we'd have two incomes (if you're wondering, he happens to be English and the NHS is a fabulous organisation that doesn't charge any patients for Copaxone).

Best of luck to those struggling to pay; I'm glad to hear they've more than halved the co-pay!

 current weight: 217.4 
 
225
211.25
197.5
183.75
170
ESMERELDA1220's Photo ESMERELDA1220 Posts: 3,214
6/15/11 9:02 P

My SparkPage
Send Private Message
Reply
Anyone who is on shared solutions and takes Copaxone can apply for assistance...they have been helping me from the get go....and the med is helping me...so its worth it...

I think that just about every pharmaceutical company gives assistance with life saving drugs with proof...
Thanks for posting
Ezz

Ezz woman

Strong yet fragile...
To sin by silence makes cowards of men...Abraham Lincoln

Give unto others as you would have others give unto you...

There is a reason and a purpose to everything in life...


Total SparkPoints: 54,823
 
50,000
52,499
54,999
57,499
59,999
SparkPoints Level 17
MELLY3183's Photo MELLY3183 Posts: 1,955
6/15/11 8:05 P

My SparkPage
Send Private Message
Reply
Apparently last week a copayment assistant plan was put into use between shared solutions and certain pharmacies. My pharmacy (Curascript) was one of them. Now, as opposed to spending $100/month for this prescription it will only be $35/month.

I don't know about you, but that is a HUGE savings to me. I'd call them and check it out :) My pharmacy just told me about this today. Thank goodness, i'm about tapped out between medical and prescription costs.

They said the reason is most people like to take copaxone but can barely afford the copayment. No yearly fees or strings attached etc (I'm a tad excited about this, can you tell?)

Their phone number 1 800 887 8100.

Have a good night and good luck!

Edited by: MELLY3183 at: 6/15/2011 (20:06)
"You have to believe in yourself when no one else does. That's what makes you a winner." - Venus Williams

"I am who I am today because of the choices I made yesterday." -Eleanor Roosevelt


 Pounds lost: 17.4 
 
0
20
40
60
80
Page: 1 of (1)  

Report Innappropriate Post

Other *SPARKING* with multiple sclerosis! General Team Discussion Forum Posts

Topics: Last Post:
Sparkgoodie! 10/30/2013 8:24:56 PM
Kon-Tiki by Thor Heyerdahl (Expanded edition) 8/24/2013 1:00:15 PM
JAN 8: QUESTION OF THE DAY: What is one... 4/28/2014 7:03:43 PM
Neurologist appointment 11/7/2013 10:26:47 PM
Traveling & MS 9/7/2014 12:47:32 PM

Thread URL: http://www.sparkpeople.com/myspark/team_messageboard_thread.asp?board=0x10755x42451154

Review our Community Guidelines