Where do you get your motivation to keep shooting?

A board to discuss the Multiple Sclerosis modifying drug Copaxone

Where do you get your motivation to keep shooting?

Postby Dejibo » Wed Nov 25, 2009 3:47 pm

I have been on copaxone for over 2 years, and must say....I am tired of it! :oops: isnt that awful?! I simply dont want to keep poking myself anymore. I am extremely lucky that its almost free to me, and I am considered stable for the time being. my lesion load has decreased, and I am very low currently on the scale of disability. I admit that the ONLY reason I currently poke myself is my hubby asked me to.

yes, I know its a gamble to stop, and yes, i know that its supposed to keep me in the slow lane, and so on and so forth. Trust me i have heard ALL the arguements for staying on it, and some how, I cant get myself pysched to keep going. I find myself resenting that my hubby asked me to keep taking this.

I am tired from the stuff, and feel like a bruised up pin cushion. I am lumpy and dented. I have pot holes in my thighs, backside, arms, and tummy. (I am not a swimsuit model, but I am not a frump either) I dunno, I guess if someone could give me some more definitive anwsers, assurances, or support, maybe I could once again be pumped to pick up that needle. In the early days I was scared to death not to.

What is your motivation? what keeps you pysched to pick up that needle? btw, I am not depressed, I am just tired. I dont wanna keep doing this. anyone else?
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Postby Absentee » Wed Nov 25, 2009 4:12 pm

I was complaining to my neuro (who I admitted I rarely get anything direct from) the last time I was in the office about the same thing. He said there was some evidence that was reported on that says every other day MAY be just as effective as every day shots - not that he was recommending that but... Maybe you can ask your neuro about that.

I understand the feeling though. Everyone says it is not forever because there are oral solutions coming soon. You are lucky if your MS is not progressing. It is hard to know if it is from the Copax or just the course it would have been anyway. I feel better since starting the stuff 1 year ago - but I still wonder.

Keeping on course is 1 day at a time. I try not to think of how many shots I've done in the past or how many I will do in the future.
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Postby Wonderfulworld » Thu Nov 26, 2009 3:19 am

The only thing that keeps me on it is thinking about my first big relapse at age 26, 11 years ago now, that had me at EDSS 9. It was horrendous. I am now EDSS 3-4 but I can't get how bad I was out of my mind.

I suppose looking at my little 21 month old son too.....want to be able to play football, running through leaves in the park, going for walks, dancing silly to music with him into the future.....
~~~~~~~~~~~~~~~
Concussus Resurgo
~~~~~~~~~~~~~~~
RR-MS dx 1998 and Coeliac dx 2003
~~~~~~~~~~~~~~~
Copaxone, Cymbalta. EPO, Fish Oils, Vitamin D3 2000 IU daily, Cal/Mag/Zinc, Multivitamin/mineral, Co-Enzyme Q10, Probiotics, Milk Thistle.
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Completely understand..

Postby Lgleaton » Sun Nov 29, 2009 8:47 am

...I have SO felt the same way!

I went to a Copaxone "Shared Solutions" presentation locally a few years back, and a Neuro from Wayne State Uni. in Detroit announced he was beginning a study on every other day injections. I informally joined his research, even if he didn't know I was there. I shot every other day for about a year and half. I looked all over for his study and its results and...nada. My neuro told me that many, many studies are never written up for lots of reasons. At the same time, Teva was doing a study on DOUBLE the dosage daily (one bigger dose a day). Their conclusions weren't significant one way of the other, if I remember correctly. All I can say for Teva, is that the needles are finally smaller!

I know this probably isn't helping, but I finally went back to shooting 5 days/week. I take Tuesdays and Fridays off. My neuro knows and thinks I'm loony, but so be it. It is the emotional, psychological break I currently need. I never miss the other days of the week. In 5 years, my MRI has shown no appreciable difference. But that could have been the case with NO Copaxone, double the Copaxone, WHO KNOWS? That's the frustrating thing for sure!

Hang in there. I feel your injection site pain!
Lisa G
DX RRMS 11/02<br />RX Copaxone 12/02 - 3/10<div>Elevated head of bed 3/10 - present</div>
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Postby dlb » Sun Nov 29, 2009 10:55 am

Hi Dejibo,

It's what this site is for... good on you for looking for support from the community! I too, have been taking copaxone for 3.5 years and basically have enjoyed a relapse-free time since starting. I did have 1 relapse in the beginning (before the 6-8 months that it is believed that it takes for the therapy to be effective) but nothing for over 3 years. Only 3 episodes in my MS "career" - 2 to be clinically diagnosed & then the last, as I described. My neuro believes that my results are because I started treatment so early & I honestly believe her - I guess that is my motivation to keep sticking myself. I have an EDSS score of zero. The bit of residual effect I had after my last relapse has disappeared. My mantra has always been to stay as healthy & positive as I can until something better happens along. Maybe it will be this new theory, maybe it will be stem cell research. 30 years ago there was nothing available for people like me & I'm so thankful that there are options available to me that will buy me time. I hope that you can hang in there too. Oral options are soon to come - another thing to hang onto. Stay well....
Deb
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Postby RedSonja » Mon Nov 30, 2009 6:24 am

What motivates me? I just need to watch my sister hobbling along on her crutch, or doodling along in her Moby.

As far as I am concerned, Cop is the only thing keeping me out of a wheelchair. That's a pretty good motivation.
Bibo ergo sum
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Postby Dejibo » Wed Dec 02, 2009 5:46 am

ok, admission time....

I have had company for the last two weeks, while my husband has been away hunting. my friend is on Betaseron. i followed HER schedule while he was gone. The mental break of not shooting myself everyday was AMAZING! I really, really needed that. I am back to daily shots now, and keeping my schedule, without breaks.

Sometimes you just need some mental health time. I was hoping this vein thing was gonna pan out, but somehow, I think IF its a cure, its gonna take some struggle to bring it to light.
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Postby Needled » Wed Dec 02, 2009 6:33 am

I've always had the feeling that once I stopped the daily shots, I wouldn't feel like I had a disease. It's just a constant, in-your-face reminder that there's something wrong with you. Yeah, I know it only takes 5 minutes or so, but it's always THERE. I haven't had a relapse in almost 4 years on Cop, but I just can't wait for the freedom of not having to do it every day. I think I will feel much better mentally, which will translate physically (I hope) with the pills, assuming they work for me and I don't have any side effects. :roll: Talk about setting myself up for a placebo effect!
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Postby MSConqueror » Wed Dec 30, 2009 3:03 pm

I understand. I've been on Copaxone since 2008 and have skipped many days. Skipping helps me forget that I am sick plus I get tired of the itching and lumps. My motivation is the fact that I haven' had any relapses since being on this drug and I would like it to remain that way as long as possible.
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Postby Vhoenecke » Wed Dec 30, 2009 10:01 pm

What keeps me shooting every day? Remembering my dad in his wheel chair unable to move at all. The longer I can stay out of that thing the better. I think that shooting will keep me out of it longer. That's my motivation. Now it is CCSVI.
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Postby greenandchic » Sun Jan 03, 2010 12:11 am

I feel the same way at times. I haven't started on Copaxone, but I am scared to death to (I know many people will tell me that I should be afraid not to). I recently had my second MRIs and I don't show any signs of getting worse since my first one. If I was on Copaxoine, I would attributed my status to that. If there is such a small chance of it working anyway, should I put all my faith in that?
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paaaiiiin!!!!

Postby burntsienna » Tue Feb 16, 2010 1:53 pm

shot two today. i don't think i can do this!!

:cry:
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Postby chort1313 » Wed Feb 17, 2010 6:10 am

burntsienna you can do it!!!!!!!!!!!!!!!!

Just think of happy thoughts while you're shooting....

My motivation comes up not wanting to get worse, and just telling myself I have to do it. It's part of my bed routine.

It also helps that I'm ok with needles. Needles are my friends :D
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Postby dlb » Wed Feb 17, 2010 8:39 am

Hi burntsienna,

I hope you can keep at it - DMTs are the best thing we can do, as proven, to help at this time. I too take my shot as part of my nighttime routine. Hopefully you have an excellent Shared Solutions rep that can help you deal with your particular issues. I find that if I use one f those gel packs that I keep in the fridge right after I inject, it really helps with discomfort, very quickly. There has been 1 time that I got a batch of copaxone that I reacted to differently. I got itching & swelling with each of the injections in that batch and unfortunately I had picked up a 3 month supply. That almost did me in but I hung in there. I used a gel that had menthol in it - used for an anti-itch for bug bites etc (Band-aide brand) and that got me through that bunch where I reacted so badly. There are many tricks & SS will really help you - use that resource & Best Wishes!
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Postby burntsienna » Wed Feb 17, 2010 9:31 am

Thanks. I think I had a particularly bad shot last night. My leg has still been really quite sore all day today. Everyone I've spoken to says that I shouldn't have had the intense pain for as long as I did last night, so I'll give it another go tonight, this time in my tummy. But I've got to say if I end up in tears again tonight, it's going to be really difficult to make myself do it again!

By the way, I'm in the UK, so I don't have any contact with Shared Solutions. There is a support line here, and I did phone them today. I've been getting a lot of support from people on various forums I visit.
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