New to injections and bit freaked out!

A board to discuss the Multiple Sclerosis modifying drug Copaxone

New to injections and bit freaked out!

Postby gracie » Fri Nov 03, 2006 6:08 am

Hi All,
I was diagnosed with MS in Aug this year and am now on my first week of injections with Copaxone. It's been a bit of a whirlwind from diagnosis to this point and am feeling a bit scared and alone with this whole injecting thing. When I inject I get a stinging sensation afterwards... this I can cope with but it's much worse on my arms and bottom. Really painful, has anyone else had this problem and did the pain just lessen over time? And if so how long before you notice a difference? My MS nurse says to try injecting deeper and experiment but from reading the forum I think that using a depth of 6 might protect against lipoatrophy but that really hurts. I'm currently using depths of 8 and 10 just to try things out but even those still hurt. Maybe I'm just freaked out that I have to inject everynight!

Think it'll help just to hear other people's experiences and realise I'm not the only one doing this everyday!
Thanks for listening,
G
User avatar
gracie
Newbie
 
Posts: 8
Joined: Wed Nov 01, 2006 4:00 pm

Advertisement

Postby Loriyas » Fri Nov 03, 2006 6:26 am

The stinging/pain was the worst in my upper arms no matter what depth I tried with the autoject. I think that's because that is the area with the least amount of fat. I was told by the nurse at Teva that I could skip my arms and just do the 5 other areas if I wanted to do that. So that's what I do. I alternate stomache, hips, and thigh areas and seem to have much less problem. I still have had some lipoatrophy in thigh area so I try to play a little with depth and change the area with that. You could try that and see if that helps.
Lori
Loriyas
Family Elder
 
Posts: 583
Joined: Sun Apr 02, 2006 3:00 pm
Location: Naples, FL

Postby Aaron » Fri Nov 03, 2006 3:47 pm

One thing that worked for me to lessen the stinging, is to let the alcohol wipe dry before injecting. That might be what is causing the discomfort.

By the way, I was on Avonnex and Rebif before the Copaxone, and I have been having the best results from the Copaxone. In my opinion, you really don't want to experience an Interferon hangover.

I know it's tough, but keep positive. Don't let this bastard win!!

-A.
User avatar
Aaron
Getting to Know You...
 
Posts: 17
Joined: Mon Jan 17, 2005 4:00 pm

Postby ewizabeth » Fri Nov 03, 2006 4:59 pm

Hi Gracie,

After awhile the pain from the shots lessens. My arms were always painful though, and the lower parts of my thighs still are.

I quit using the autoinjector for the spots I can reach, and inject manually according to the directions on the package insert. That made a difference for me, because I can pinch the skin and make sure I'm shooting into fat and far enough away from the muscle.

I still use the injector for the heiny shots, and don't use my arms anymore. I use an 8 for the depth. I also gained about 10 pounds, so I have some fat to shoot into, I was pretty skinny before.

The shots gradually became less painful for me over time.

It really is a good medicine, and it takes some trial and error to get a really good routine. It does get easier! I can do my shot in under five minutes now.
Take care, Ewizabeth Previously Avonex, Rebif & Copaxone RRMS ~Tysabri, 31 infusions, ended 9/09. Starting Copaxone 12/09, waiting for Cladribine to be approved in 2010.
User avatar
ewizabeth
Family Elder
 
Posts: 270
Joined: Fri Jun 25, 2004 3:00 pm
Location: Near Chicago

Postby gracie » Wed Nov 08, 2006 5:18 am

Thanks for the responses, it really helps to know other people are coping ok and that it'll get easier. I'm still finding injecting really difficult, in fact it's even more painful now but I think that's probably because I'm nervous and tense about the whole thing. I've decided that depth 6 is not for me... I was in a lot of pain and could feel the medication as it was injected which was very unpleasant and I bled a lot more than usual. I'm also thinking that the arm shots might not be for me either but it's too early days (only 2 weeks!) so I'll keep going with it all and see how I go.

It means a lot that you took the time to respond so thank you, it's also really good to hear that you all believe in this medication and that it's working for you so good incentive to persevere.

Thanks again,
G
User avatar
gracie
Newbie
 
Posts: 8
Joined: Wed Nov 01, 2006 4:00 pm

Postby Toyoterry » Wed Nov 08, 2006 6:04 pm

I've been on Copaxone for two years and the only problem I ever had was the stinging. I found that if I let the alcohol dry before injecting, the stinging was not a problem.
User avatar
Toyoterry
Family Elder
 
Posts: 111
Joined: Tue Apr 19, 2005 3:00 pm

Postby Lizzy » Fri Nov 10, 2006 7:36 am

I just had a visit with my neuro - over the last few months i had moved my copaxone injection on my legs up to almost where my leg and hip join. I asked her if this was ok - AND ITS NOT. . i had moved it there bc of the lumpy bumps that i was getting my thighs (and the side of my thighs) - i though it was working great, less pain and no bumps. But i guess there are many nerves there that should not be fooled with. . i just wanted to pass this on - so check with your neuro before you move stuff around.
User avatar
Lizzy
Getting to Know You...
 
Posts: 16
Joined: Tue Feb 21, 2006 4:00 pm

Postby bebe » Mon Nov 20, 2006 8:17 pm

Pay attention to those "lumpy bump"....that can be the start of lipoatrophy which is becoming more and more common with Copaxone injections. Some publications are saying up to 50% of people will get varying degrees (mild, moderate, severe). Unfortunatley, it is irreversible and can be dis-figuring. In addition, it creates a problem because you can not continue to inject in those areas....there is no sub-q tissue left to absorb the medication.
User avatar
bebe
Family Member
 
Posts: 50
Joined: Tue Oct 26, 2004 3:00 pm

Postby connieb » Tue Nov 21, 2006 11:27 am

Oh no Bebe, say it isn't so! I've been on Copaxone for 2 mos only and am lumpy all over! I've tried injecting deeper, shallower (I don't have a whole lot of body fat. so I can go only so deep), warm compresses, icing-- nothing seems to work consistently-- it all depends on where I inject! Any ideas on how to avoid the lumps? Should you go deeper or more shallow?
User avatar
connieb
Family Member
 
Posts: 93
Joined: Fri Oct 20, 2006 3:00 pm

Postby Lizzy » Tue Nov 21, 2006 11:38 am

the lumps and bumps are horrible - i have perm dents on the sides of my legs from them, massaging hasn't helped - i tried moving the shots around, but i got in trouble from my neuro, sometimes i inject in the front of my legs - but that kills. . .
User avatar
Lizzy
Getting to Know You...
 
Posts: 16
Joined: Tue Feb 21, 2006 4:00 pm

Postby Houdini » Tue Nov 21, 2006 12:07 pm

I found that the lumps stopped being a problem afer a few months, and I rarely get them now. I know you all know this, but you MUST rotate sites - 7 different sites per week. If you try to cheat here, you will set yourself up for the permanent "denting" described above. Also, pay attention to varying the point of injection at each site and make sure that you inject each site on the same day of the week (i.e., 7 days should have passed since the last time you inject any one site).
User avatar
Houdini
Family Member
 
Posts: 26
Joined: Sun Oct 10, 2004 3:00 pm

Postby connieb » Tue Nov 21, 2006 5:53 pm

Houdini, so now that I'm back to having to inject a site where I still have large hard lumps from two/three weeks ago, what do I do? Inject into a lumpy area? Near it ? Nowhere near it? I'm running out of virgin flesh to sacrifice! It's good to know that your body gets used to it after a few months though!
User avatar
connieb
Family Member
 
Posts: 93
Joined: Fri Oct 20, 2006 3:00 pm

Postby gracie » Mon Nov 27, 2006 4:57 am

I've been really careful about rotating the injection sites and changing the location within each of the sites too but this week a day after injecting I find the site is really itchy and red. I'm confused as it's been different this week then other times. I don't know if I'm using too much heat after injecting, would that affect it? I'm very paranoid about lumps and bumps as everytime I inject in my arms I end up with a large hard lump for a few days and even had to skip injecting into one arm for a week because it was so sore. Was this all usual for people when they first started injecting or am I doing something wrong?

On the plus side the stinging only lasts for about 5 mins now, much shorter than before so there's always a positive if you want to find it! Here's a question though, regardless of pain is it better to inject deeper or shallower to avoid bumps? If I know then I can decide if the pain is worth it.

Thanks guys
User avatar
gracie
Newbie
 
Posts: 8
Joined: Wed Nov 01, 2006 4:00 pm

Postby Lizzy » Mon Nov 27, 2006 11:00 am

I'm interested in any possibilities as well, i would take a little more pain for less dents and bumps - i follow all the rules as far as rotation arms, legs, hips and tummy - i also rotate within each site. . the outside of my legs look horrible - I have been on copaxone 1.5 years, holding strong.
User avatar
Lizzy
Getting to Know You...
 
Posts: 16
Joined: Tue Feb 21, 2006 4:00 pm

Postby gracie » Wed Nov 29, 2006 6:45 am

I had a suggestion by my MS nurse that I should massage the area after injecting. I had a horrible injection last night on my left thigh, I assume I hit muscle because I could see the side of my leg throbbing and it was very painful. As usual I could feel a hard lump under the skin, these usually last most of the week until I get round to that area again but I decided to try out the advice and massage the injection site. Very unpleasant and quite painful at times but I have no hard lump under the skin today. It's still tender but that's to be expected. I don't know if that'll have any affects on long term lumps and bumps but pain wise it was totally worth it as it has meant that I'm not as uncomfortable in that area today as I have been previously.

I haven't been doing this long so I'm just trying to find the best routine to avoid any problems in the future. I'll definitely be trying that on other problem areas like my arms. If anyone knows if this is a good or bad thing for stopping unsightly lumps and bumps I'd like to know but I'm just relieved to have my leg feel more normal than usual after injection.
User avatar
gracie
Newbie
 
Posts: 8
Joined: Wed Nov 01, 2006 4:00 pm

Next

Return to Copaxone

 


  • Related topics
    Replies
    Views
    Last post

Who is online

Users browsing this forum: No registered users