Discontinuing My Avonex Injections

A board to discuss the Multiple Sclerosis modifying drug Avonex
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Re: Discontinuing My Avonex Injections

Post by pepsimania » Fri Jul 27, 2012 4:36 pm

Hi everyone.
This is my first post here too. And what I have been reading is so surprising to me. My story with using Avonex has been rather different then most of what I have read. Though at least when I got to the post from Mechanicallyinclined I was more relieved at what I was reading.

I found out that I had MS years ago, about 30 I guess now. At first the regular doctors kept telling me that I just had arthritis. But I was getting more and more unsteady on my feet, having memory prolems, would reach for something and miss it intirely. And as for eating, it was a nightmare anymore for me. Then one day when I bounced my boss of the hallway wall walking by him with my vearing-off-walkpath gait, doc finially decided to send me to a Neuroligist for tests.

At first that doc didnt find anything in particular she could put her finger on. But she was as stubborn as me and sent me for a couple of tests. No postive results for findings on those. Then she talked to me about a spinal tap. NO WAAY. But we talked further and I finially decided to try. (Thats one thing I liked about her, she doesnt force an opinion, and lets you make finale decisions on whether to do or take something. I respect that a lot.) Well the fluid from the spinal tap was the trigger for her. She had an opinion but wanted a finale scan done to be sure. So had that done. Was kinda cool too, got to see the scans on the computer myself afterwards lol. Anyway it was the finale proof she needed for my diagnosis for Multiple Sclerosis. Just what I needed, my mom dieing of lukemia and now this. But she assured me was not a death sentence and gave me a ton of pamplets and literature for it.

Well I read those things. And did a lot of research on my own for treatments, results of it, medicines, even some wierd bee therapy, (and me allergic to bees). After checking out the tons of stuff I found on my own along with the things she gave me I was ready for my next appt with her for what we were going to do about it. That was a very good appt.
She gave me a choice of three types of injections I could take to help ease the progression of the MS. It isnt curable yet. I made my decision without hesitation for the Avonex shots weekly. There was no way I would touch the other kinds after what I had found on them. So she started me on the shots. Even had a health nurse come out and show me how to do it. Practiced with an orange of all things. Not sure if I liked her explanation of the orange being the closest to human skin texture, but whatever lol. Then my shots where put on schedule.

I didnt use the arm location, was afraid of hitting bone or not getting it right doing one handed. Didnt do the side hip location for fear of hitting pelvic bone. Didnt want no needle tips broke off inside or bone chips. Or so I feared. Was using the powder form you mix yourself at the time. And that one came with a longer needle. Yuck hate needles. I started out using mine on my upper leg between knee and hip joint. Used an alternate clock pattern for the shot spots so woudnt get my legs sore. Figured if had to do this the rest of my life might as well do it right lol. Even kept a log of shots and results if any for few years.

After a while they came out with the prefilled syringes. That was a lot easier for me to use. And now looking into the idea of this Avonex Pen thing they have out. Take my Avonex now with only one side affect left. Usually have to take an extra long nap day after. And as far as my medicine collection. Its varied but finially got the combination that works. Only dont take as often as should. Just once a day for me to keep from building up a resistance to it for future years to come. Do find that the IBprofine (800) works good to take about hour before shot. Been taking it for years now.

When I think of the years of pain and problems I went through before and the job it cost me because of them, well it sure would of been different if discovered earlier. I worked out an exercise program I can do when I wake up in the mornings to keep my muscles from stiffining up. I have put some weight on, and more then you others mentioned on here, but living with it. It took a long time for her to talk me into deligating different things I use to do, and still tried to do, to others to make things easier. My stubborness I guess. But heck I am the mom, its my place to do most of that stuff. I will be too old soon enough and have to have help. Just guess it came sooner. Darnit lol.

I do so wish had found out about this before did though. I went from walking proudly, to stumbling around like a drunk over time. Then in just the matter of a month I went from that to using a cane, then to a walker, then to a wheelchair. If I hadnt been able to find out what my problem was, and get the medicine needed to slow it down, I hate to think where I would be now. At least can walk around some as long as can reach out for support if need it. And only need wheelchair if have to leave house for something. That at least is a relief.

Now I am homebound. My life consists of this computer for outside contact. I can still drive, but couldnt afford a simple repair my car needed. And with paying the insurance on it for years and it just sitting there, was finially forced to sell it. I really loved that car, was to be the last one before got too old to drive safely. My MS doctor is proud of my stubborness (must make her think of her own lol). I refuse to give up. No way no how. Even came up with a way to discribe it better then she could for others. Kinda wierd but worked for me.

I also do a fill-in word puzzle when I get up to keep mind sharp. Then whatever I can do before my daughter or caregiver stops me from being dumb enough to try to do. Rest of time am on here playing games, hosting tournaments, helping others with MS, and what ever else I come up with on here. Doc wanted me to keep my mind active so guess this helps.

And like I always say. Rather have Multiple Sclerosis than have cancer. At least it isnt a death sentence unless you are dumb enough to walk infront of a bus lol.

BTW what is this CCwhatever thing you guys kept talking about.

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Re: Discontinuing My Avonex Injections

Post by NHE » Sun Jul 29, 2012 9:50 am

pepsimania wrote:And like I always say. Rather have Multiple Sclerosis than have cancer. At least it isnt a death sentence unless you are dumb enough to walk infront of a bus lol.
I have a family member that has been diagnosed with two different cancers, breast cancer and colon cancer. Surgery to remove the tumor took care of it in both cases. She is in better physical condition than I am.
BTW what is this CCwhatever thing you guys kept talking about.
Chronic Cerebrospinal Venous Insufficiency (CCSVI). http://www.thisisms.com/forum/chronic-c ... ccsvi-f40/

It's a new paradigm for understanding neurological problems that may be related to poor blood drainage from the central nervous system.


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Re: Discontinuing My Avonex Injections

Post by tulpen » Sun Nov 25, 2012 9:34 pm

Hi ambuscio, I was hoping you could give us an update on discontinuing Avonex. I'm in a similar situation--can't stand the side effects and also having severe gastro-intestinal distress since starting. I've taken it for 4 years. How are your symptoms? Have you done anything else to treat it (exercise, diet, supplements)? Thanks for sharing your story.

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