Shared Solutions called today....

[figuerpa]

They have already sent my auto injector, told me if I don't have it by Thursday next week to call them. They took all my insurance information and are going to work with them, she said it take 24 to 48 hours to deal with insurance companies.

Once they have approval fromt he insurance company a nurse will contact me to come out here to educate me on how to do it and answer any questions I might have. I am happy it is finally going through. Guess my neuro got the front desk on the ball this time.

This morning I was getting ready to leave the house and DH said, "are you drunk?" I was like "no, why?" He said I was walking like I was drunk. The funny thing is that I didn't even notice it lol. Guess I am use to it so it doesn't bother me!? But if he noticed it that much it must have been pretty bad. Needless to say I moved around the house a bit longer than I would have just to see if it would go away. Don't want to drive if I can't walk a straight line lol.

Anyway good news from my side for a change :)

Paula

[figuerpa]

Mary,

I intend to stick with the Copaxone, my doctor was pushing more toward the Gylenya but I chose Copaxone due to not having to be monitored and not having the flu like side affects.

He told me that we will give the Copaxone some time and see if I like it and if not then we will try something else. I don't want to be on something that I have to be monitored so Copaxone it is.

I know that not everyone has the same side affects, you know I couldn't wait to start a DMD and now that it is here I have to admit it is kind of scary for me but I will get through this just like I have everything else lol.

In the beginning I got freaked out about every little thing that happened to me, now I just accept it and keep going. I know what it is and that there isn't much to do for it but to just accept it.


I had IVSM a few times and the taste in my mouth was horrible. I didn't have a problem with weight gain, my biggest complaint is when the treatment is over and I go through the withdrawls and I turn into a raving WITCH but I get through that too and my family knows that it is the steroids and not me lol. My doctor never does a taper dose, not sure why I keep meaning to ask him but I don't think about it when I am in the office.

I should be starting the Copaxone in a couple of weeks. My auto injector will be here tomorrow, Fed Ex called me Friday and said they would deliver Monday. Then I just need to wait for the Copaxone delivery and I will be ready to go.

Paula

[twopack]

Paula, Paula.  Please try to relax a little.  As you know from taking some of the drugs that treat symptoms, every person does not have every reaction and we certainly don't all have them to the same degree.

How about IV steroids?  I've heard over and over how bad they are to take.  I dreaded the bad taste and weight gain but never experienced either.  In fact, I lost weight when I was on a long term tapering dose of prednisone.

Although injection site reactions are pretty common there is no guarantee you will have the hard time described by some on this forum.  We tend to hear about problems more than successes here and can forget that many PwMS are feeling well or taking medications with few problems.

And if you do have some difficulties with the injections we will be here to help you through that too!  We have lots of tricks to help get members through if hard times hit.

Personally, I'll admit I too wondered if I would make it through the sting and welt and ITCH (that's the one that worried me most).  Isn't it amazing what we imagine we can't survive even after we have made it through things like crushing fatigue, nerve pain, paralysis, low vision and job loss?

Yes, some days have been harder than others.  Most of them were early on in Copaxone therapy.  Yes, I've had some welts but they seldom itch, are usually gone within a few hours and actually rarely appear on my arms.  But just in case, when my son got married and I was wearing a sleeveless dress I skipped my arms - the sites, NOT the injections.

Starting a DMD is one of those times with MS that we take one of the biggest rollar-coaster rides the journey has to offer.  Problem is, the ups and downs of emotion aren't near as much fun as a Six Flags vacation.  Sure can leave us with a bit of a sick stomach feeling though.  You can be certain your fears are familiar to all ticket holders.

I believe you will do fine and I'll believe for you if you aren't able to believe for yourself just now.  Please live with this good choice you've made for a while.  You are always free to trial a different choice if this one proves itself unwilling to work within your personal boundaries.

Let us know as you have a question or need encouragement.  We're here.
Mary

[JaneK1975]

Okay, when I say less than 12 hours, what I mean is there was a welt after the shot, but it was gone when I woke up the next morning. I got to sleep in both days following the two shots I have taken, so I know it was gone in less than 12 hours. It could have been gone is less than six. I wouldn't be surprised, actually.

I feel the same way you do about the welts. I live in Southern California and I'm used to walking around in a bathing suit half the summer, but I feel like I can work around these welts even in summertime.

I think I'm pretty lucky as far as having small sight reactions, but I think you might find they're not as bad as you think. I thought they'd be worse...

[figuerpa]

Thanks Jane,

That is what I told myself, everyone has different reactions. A welt that lasted 12 hours? really? That is 12 hours of no welt before your next shot. I am trying to get into this but I don't want to walk around with welts and feeling like I have a bee sting for 5 to 10 minutes. I can handle the sting if it is minor like you said but the welt. On the days I do my arm will I have to wear shirts that cover it so no one can see the welt.

Jeez this is a lot, I am happy to finally start a DMD but now I am reconsidering Copaxone due to the things I have learned since I chose it. Well I will still give it a shot and see what happens. Hopefully the welts wont be bad on me or wont be there at all.

Paula

[JaneK1975]

Okay, I can only speak for my own experience and I understand that individuals respond differently... but:

From my experience, I felt the sting but it was not that bad. The *way* it feels is similar to a bee sting, but it was about 1 one-hundredth as severe as the pain you get from a bee sting. It lasted 5-10 minutes, then I had a welt. The welt lasted less than 12 hours.

Jenphilly is another member that started Copaxone recently (a few months ago, I believe). She says she tries to have a chore lined up to do immediately after the shot to get her mind off the sting. It really is so minor that you can take your mind off it by occupying yourself with other things.

There is one thing will give you a heads up on that I found hilarious: When my nurse watched me do the first shot, she stared at me for 10 minutes afterwards. I know she was monitoring my body's reaction, but it was funny. I mean she was STARING at me.

Best wishes, and please don't hesitate to ask other questions. I'm sure more forum members will chime in here as there seems to be many of us on Copaxone.

- Jane

[figuerpa]

Lulu,

Me to, he apparentley wasn't playing games this time :)

Jane,

glad to hear you started your meds. The thing that worries me is that the nurse who talked to me said that the biggest complaint they recieve is that it stings when you inject. I said well that is to be expected with any shot and she said no, this is more like a bee sting, but she said it differs for everyone. I don't want to be stung by a bee every day for the rest of my life lol. I will see how it works for me and go from there.

I am really hoping Copaxone works for me so that I don't have to do an interferon. I don't want to have to monitor my liver levels all the time but I will if I have too.

Paula

[JaneK1975]

I'm super happy for you that the process has started. I had my first Copaxone shot last night and for some reason I am finding myself a lot less stressed out now that I'm on a med. I suppose just being able to do something - even if it doesn't cause an immediate improvement - feels good.

From the time Shared Solutions first called me to tell me the autojector was in the mail to when the meds arrived at my house was two to three weeks. Every step basically took a few more days than they said it would. I found myself calling to check on things every week or so, just to make sure there wasn't a snag somewhere.

Best wishes as you get everything scheduled. I got a cool nurse - hope you do too!

- Jane

[Lulu54]

Paula, that is terrific news from your corner of the state.  I am so happy to hear your drugs are coming and his call made a difference.