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-   -   Hi...I am a newbie, MS Dx 1998. (https://www.neurotalk.org/multiple-sclerosis/193056-hi-am-newbie-ms-dx-1998-a.html)

MSindependent 08-20-2013 03:27 PM

Hi...I am a newbie, MS Dx 1998.
 
Hello everyone. I am new to this forum. I have been dx with MS since Dec 1998 and have been on Avonex since March of 1999.

My reason for joining is for support and with this visit is to address an issue I am having and hopefully get a response from someone that has had similar experience or some expertise.

After almost 15 years of weekly IM injections, I have suddenly (past 6 weeks) had my needles rejected by a large and hard jumping mass of muscle) and so much shooting pain it brought tears.

Today, after yet another attempt to my right thigh it happened again, I could not even inject nor was I able to get it past a few layers of skin. It hurt!!

Could this be damage to my muscles after so many years of IM injections, could it be atrophy or scar tissue?

Thank you.

cdwyer49 08-20-2013 04:34 PM

Hi MSindependent, I can't really answer your question as I was only recently diagnosed and have only been doing injections for 6 months, but I wanted to welcome you to the forum! There are many knowledgable people here and they are always quick to lend advice. My only advice would be to see your neurologist. It sounds like atrophy to me...but again, I'm hardly an expert at this stage. Good luck!

MSindependent 08-20-2013 05:08 PM

Quote:

Originally Posted by cdwyer49 (Post 1008645)
Hi MSindependent, I can't really answer your question as I was only recently diagnosed and have only been doing injections for 6 months, but I wanted to welcome you to the forum! There are many knowledgable people here and they are always quick to lend advice. My only advice would be to see your neurologist. It sounds like atrophy to me...but again, I'm hardly an expert at this stage. Good luck!

Thank you for the welcome.

My neuro called me back almost immediately and wants to see me in his office this Thursday. He said he thinks its perhaps my body saying " it is tired of all the injections".

I suppose after over 14 years of Avonex...its time to explore other alternatives. :-)

NurseNancy 08-20-2013 08:26 PM

dear ms,
welcome to NT.
it's very plausable that that is the reason.

i was on Copaxone for 10 yrs; sub q. i started having site problems. after a talkd with my neuro i stopped. but, i've never had a flare so he said to stop.

you're lucky to have such a responsive dr who also will see you right away.
let us know what he says.

MSindependent 08-21-2013 04:33 AM

Quote:

Originally Posted by NurseNancy (Post 1008697)
dear ms,
welcome to NT.
it's very plausable that that is the reason.

i was on Copaxone for 10 yrs; sub q. i started having site problems. after a talkd with my neuro i stopped. but, i've never had a flare so he said to stop.

you're lucky to have such a responsive dr who also will see you right away.
let us know what he says.

NurseNancy,

Thanks for responding.

I have done fabulous on Avonex, MRI results show no new lesions and that some of the others had shrunk. I had mild flares through the years but thats it.

My doc said he was septical about the oral meds as they were so new, and I wanted to go that route, but I kept on sticking <grin>.

I can't imagine what he will suggest now...but maybe he will even let me take a mini break. I will post after my visit Thursday.

jprinz99 08-21-2013 05:42 AM

Welcome! And good luck Thursday with you appointment. :)

Lynn 08-21-2013 06:21 AM

Hi there

Nice to meet you. I was on Beta for eight years - it worked super well for me, but the side effects were just too much to continue with it. After that I went on to Tysabri which has also been wonderful for me, is convenient and I have no adverse reaction to it.

I know it has a really nasty risk profile for PML with some people, but if you are JC Negative it may be worth considering.

MSindependent 08-21-2013 12:45 PM

Thank you for responding
 
I am gearing up for a sudden change in rx. I am contemplating the new oral by Biogen/Idec, makers of Avonex.

After almost 15 years of religiously poking myself, I would like to take a break from needles.

Has anybody had an experience with this drug or know of someone? I did a little research and found that this has the least side effects thus far of the orals available.

I am certain the Neuro will tell me tomorrow that I need to be diligent in getting on to another choice.

I am halfway hoping that he will let me take a med vacation, but doubt it as he is persistant in MS advocacy.

SallyC 08-21-2013 01:44 PM

Welcome home MSIndependent..:hug:

Debbie D 08-21-2013 01:55 PM

Welcome to NT!! Lots of info, support, hugs, and laughs here...

I was on Copaxone for 4+years, and finally went off due to site reactions and tissue destruction.

Let us know what your neuro says...I also am leery of the oral meds until they are further along in usage.

I had taken breaks of a month or more before I totally quit Copaxone...maybe you'll go on holiday for a bit and try again...

Anyway, keep us up to date on how things are going:hug:


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