Copaxone When does the pain end?

A board to discuss the Multiple Sclerosis modifying drug Copaxone

Copaxone When does the pain end?

Postby tt89 » Sun Sep 07, 2008 7:44 pm

Ok...

When does this shot become less painful? I mean I've been on it since July and its the worst most painful shot ever! The welts are terrible and the itching is insane but I'm trying to tough it out like the new Neuro doc said too till December.....

Has anyone had that horrible flushing side effect they talk about? Thankfully I have not but I have had others but the pain of that shot is making me put if off later and later at night.

I've tried all the tips from the Copaxone people but I don't think those people have MS nor do they have to take the shot!!!!


I see the Urologist soon. God I hope she can help me stop getting up 20 times a night to "pee"....

I walked this weekend alot which was good. I'm determined to walk and not ever stop walking.. I still have some muscle pain but the magnesium I'm taking may be helping but the pain in my hips/side/lower back still remain pretty awful..

Thanks to everyone for your help
User avatar
tt89
Family Member
 
Posts: 97
Joined: Tue Aug 12, 2008 2:00 pm
Location: USA

Advertisement

you mean the stinging?

Postby notasperfectasyou » Mon Sep 08, 2008 11:00 am

are you just talking about the stinging, or other things?
User avatar
notasperfectasyou
Family Elder
 
Posts: 774
Joined: Thu Feb 09, 2006 3:00 pm
Location: Northern Virginia

Postby daverestonvirginia » Mon Sep 08, 2008 12:35 pm

Sorry to hear you are having so much trouble. I really do not know what to tell you, I have been on copaxone for almost three years and have never had the experiences you are describing. My sister who also has MS has been on copaxone now for over nine years I believe and also has not experienced any thing like you have described. That is one of the really hard things with MS, everyone can have different experiences right across the board from symptoms, to treatment results, to you name it.
User avatar
daverestonvirginia
Family Elder
 
Posts: 183
Joined: Mon Apr 09, 2007 2:00 pm
Location: Reston, Virginia

Postby tt89 » Mon Sep 08, 2008 5:45 pm

Yes Im sorry. The painful sting of the shot which has not let up at all and the horrendous welts. For me to say Im in pain, Im in pain...I rarely use pain meds for the MS pain unless I can't take it anymore.

The shots are just so awful to me. Do they ever let up?
User avatar
tt89
Family Member
 
Posts: 97
Joined: Tue Aug 12, 2008 2:00 pm
Location: USA

here's the link

Postby notasperfectasyou » Mon Sep 08, 2008 6:03 pm

User avatar
notasperfectasyou
Family Elder
 
Posts: 774
Joined: Thu Feb 09, 2006 3:00 pm
Location: Northern Virginia

Postby tt89 » Mon Sep 08, 2008 6:30 pm

Thanks again for all your help tonight...
User avatar
tt89
Family Member
 
Posts: 97
Joined: Tue Aug 12, 2008 2:00 pm
Location: USA

Postby MrsGeorge » Wed Sep 10, 2008 1:37 am

I have been on Copaxone since June and I know exactly what you are talking about! I keep a cold gel pack in the freezer and have it ready - as soon as the needle is out I slap on the gel pack - it really helps with the pain & itching. Just make sure the pack has been out of the freezer a minute or you ice-burn yourself (but then even that is preferable)
User avatar
MrsGeorge
Family Elder
 
Posts: 334
Joined: Mon Dec 10, 2007 3:00 pm

Postby Wonderfulworld » Sun Sep 14, 2008 11:19 am

Hi TT89
that sounds awful for you. I have been on Copaxone 5 years and haven't had that kind of pain at all with the injections.

I DID though on Rebif, it was intensely painful to inject that for me. As Dave says everyone is different. It is awful to have that kind of discomfort with a daily injection.

I did use a product called "Emla cream" - you put it on in a blob where you are going to inject, then you cover it in a special plaster that holds it against your skin for about an hour. Then you wash it off and hey presto your skin is numb totally. It did help the pain of the Rebif injections a bit, but not totally. Might be worth a try to see if it would make the Copaxone easier for you?

I got the Emla cream on prescription. HTH.
Wonderfulworld
Family Elder
 
Posts: 773
Joined: Sun Aug 27, 2006 2:00 pm
Location: Ireland

Postby Cleremond2000 » Fri Oct 24, 2008 2:06 pm

Very sorry to hear you are having difficulty.

I just started Copaxone in late February this year. I've gotten used to giving my injections for the most part. Had difficulty for the first month, simply because of the psychological aspect that comes along with shooting yourself up. But, now its more or less routine. The needle itself for the most part, doesn't hurt and sometimes only feels like a puff of air against my skin. I use the Autoject 2 and its an absolute godsend for administering the shot. I don't think I could do it manually. If your shots are REALLY hurting, you may be injecting to deep, hitting the muscle instead of staying subcutaneous.

I am male, 5'9", 152lbs..so there ain't too much subq fat on my bod. On my hips and belly I use a 6mm setting which seems to be perfect, no shot pain, just the 2-3 minute burn of the mannitol which you aren't going to be able to avoid. Mannitol, which suspends the galtirmer acetate is an alcohol and sugar based solution.....it burns, get used to it. I was using the same 6mm setting on my arms and thighs early on and it was leaving them sore for the whole week, feeling better only just in time to get popped again on the next rotation to that site. I talked to one of the Shared Solutions nurses and she highly recommended I dial back the Autoject setting to 4mm and that has helped tremendously with the site soreness on my thighs and arms. Now, its 2 minutes of burn, followed by maybe 2 - 4 hours of site swelling (what i call the "Copaxone Areola"), and then maybe another half day of mild tenderness. By the time the site rolls around to the next rotation, its good to go.

Injections hurt. There's really no way around it. My good friend, who has type I diabetes and has to shoot insulin all the time, sometimes up to 8 times a day when she's not able to wear or use her insulin pump basically told me, "Quit being such a pussy! This is your life. You do what you gotta do." Truer words were never spoken.

Now, I tend to view any pain I feel from the injections as sort of a rite of passage. I adapt and overcome. I was in the Army for 6 years and when ever things seemed bad, we had a mantra that was always said with a smile and a laugh.....

"Man, I LOVE how much this sucks!!"

Wishing you all the best

- KC
User avatar
Cleremond2000
Family Member
 
Posts: 29
Joined: Thu Oct 23, 2008 2:00 pm

Postby patientx » Thu Oct 30, 2008 8:59 am

Wow, Shared Solutions recommended 4mm setting on the auto-injector? When the nurse was showing me how to do the injections, she recommended 6mm (down from 8) only after I convinced her I didn't have a lot of extra padding (I'm significantly lighter that 152). I don't get any lumps or bruising, but the injection area does get sore and stays that way for a day or two.
User avatar
patientx
Family Elder
 
Posts: 1068
Joined: Wed Sep 10, 2008 2:00 pm

Postby Cleremond2000 » Thu Oct 30, 2008 9:10 am

EDIT: Just to clarify...The Shared Solutions nurse that did my injection training originally recommend 6mm on the Autoject for all of my sites. But using a 6 on my arms and thighs was murder because I was injecting muscularly instead of subq. I called after the first month and the online nurse recommended that I use a setting of 4 for my thighs and arms. She also recommended a great technique for doing my arms that calls for holding your arm out, palm facing up, and injecting from underneath. I do this by sitting in a chair, and resting my elbow on the back of a chair in front of me so that the back of my arm, where my tricep is, hangs down and there is a lot more cushion for the injection.

Yeah...if your injecting at any site that is really lean on subq fat, try dialing back to 4 on the autoject. It has really helped me. I wouldn't recommend dialing back any further than that though other wise you might create a bubble at the skin after injecting which can't be good. If you have a lot of fat on your hips or tummy...you might even want to go to 8 or higher on the autoject. The deeper you can go and still be subq, the less surface skin reaction you'll have. My MS peer advocate told me that he was using and 8 or even a 12 on certain sites because he had the cushion for it. He said he suffers very little in the way of site reactions.
User avatar
Cleremond2000
Family Member
 
Posts: 29
Joined: Thu Oct 23, 2008 2:00 pm

Postby Arcee » Sat Nov 08, 2008 7:44 am

I too am pretty lean and am on Copaxone. I found that even with the autoinject set on 4, the shots were painful and I was getting huge bruises that lasted a long time. I found that two things really helped:

- manual injections. took a bit of getting used to, but no bruises and no real pain.

- Also, it helped me to realize fully that my body did not match the pictures in the Copaxone literature, and no matter how supportive the nurses were on the phone, they were limited in what they could say because they could not veer off of what was FDA approved. So when I saw my PCP, she looked and poked at my body and helped me figure out locations with a serviceable amount of the right kind of fat.(cellulite does not work.).

I ice right after an injection for a few minutes to take away the sting, but the injections are so much better now.
User avatar
Arcee
Family Elder
 
Posts: 338
Joined: Wed Jan 05, 2005 3:00 pm
Location: Massachusetts, USA

Re: Copaxone When does the pain end?

Postby Trisha2021 » Thu Nov 07, 2013 7:13 pm

Hi, my name is Trisha . I jut got diagnosed with MS 6 months ago and the specialist put me on the copaxone . I am going through the same as you are... Every time I inject I have big swollen blotches that hurt and are itchy and they also sometimes turn black and blue. I also don't know what to do any longer . I am a curvy women I have good fat to inject but I am in so much pain it's unbearable. I tried heat but I do prefer the cooling I did have shared solutions out here to teach me and I have follow up calls but like I said I dunno !!! I hope we find out what's wrong and how to do this
Trisha2021
Newbie
 
Posts: 2
Joined: Thu Nov 07, 2013 6:55 pm

Re: Copaxone When does the pain end?

Postby NHE » Thu Nov 07, 2013 10:45 pm

Trisha2021 wrote:Hi, my name is Trisha . I jut got diagnosed with MS 6 months ago and the specialist put me on the copaxone . I am going through the same as you are... Every time I inject I have big swollen blotches that hurt and are itchy and they also sometimes turn black and blue. I also don't know what to do any longer . I am a curvy women I have good fat to inject but I am in so much pain it's unbearable. I tried heat but I do prefer the cooling I did have shared solutions out here to teach me and I have follow up calls but like I said I dunno !!! I hope we find out what's wrong and how to do this


Hi Trisha,
There is this thread which discusses reducing copaxone injection site reactions which may be of help.

Copaxone Sting Reduction Technique
copaxone-f4/topic4405.html
User avatar
NHE
Volunteer Moderator
 
Posts: 3419
Joined: Sat Nov 20, 2004 3:00 pm


Return to Copaxone

 


  • Related topics
    Replies
    Views
    Last post

Who is online

Users browsing this forum: No registered users


Contact us | Terms of Service