Encouraging words anyone? New to Ms n Meds

[Robbie67]

Hi i am finally starting meds dx'd april2013 after waiting several months to be approved i was trained on rebif got all stuff welcome kit sharp container nurse training and never was approved for drug, anyway sorry off the subject. As of july 3 i will be starting avonex tiltration first then pen. I am Scared to death injections n then diff training for pen its very overwhelming. I was just wondering how u "hype" urself up to do this. I am a single mom my kids r under 13. My anxiety is bad does anyone have any advise. The side effects alone is enough to scare u off

LiveLaughLove

[Marco]

Hi Robbie!

I can understand your apprehension about starting shots. I'd actually be more worried about you if you were excited about this process.

When my neurologist first asked me how I felt about shots I responded, "I'd rather stab my neuro than myself." My wife was mortified and the neuro sorta nervously laughed. I was just telling the truth about taking these shots.

A few weeks later, the shots were no big deal. They were simply part of a routine like brushing your teeth or showering.

Please let us know how you are doing and if you have any questions.

[penny70]

You'll be OK

Yes it's scary at first. But in no time it'll be old habit. I was on Avonex a little over 6 years. Not a big needle/shot fan but got used to it. I never used the pen so can't help you there, mine were always prefilled syringe and I don't recall anything other than full dose...so good luck. Think the build up would be a good thing.

Side effects got better over time. Flu like symptoms were the worse: sight temp, chills but not horrible.

I basically followed the same routine the entire time. Not broke don't fix it thought process.

I would follow the following routine:

2 hrs prior to shot take 2 Aleve
At shot time numb area (I eventually gave this step up.)
About 3 hrs following shot two Tylenol PM.

The Tylenol helped with fever, chills and alowd mw to sleep though night. I basically took my shot at 7 in evening. Bed about 10 so could have 8 hrs sleep before getting up for work the next morning. Took my shot Tues nights. Just find the routine that works best for you & stick to it.

Good Luck!
Penny

[Bob698]

I usually tells new folks that you'll be amazed how quickly the needle becomes just another part of your day.

If anything, don't fall into the trap of multitasking when its shot time. Get into the right habits for doing your shot and stick with them. Its when the shot changes from terror to blasse that we get in trouble.

[akafearless]

You will do fine!

I do very similar to Penny except shot nite is Thursday. I pre medicate with 1 aleve 30 min before shot. Shot time is at 8. Take 2 aleve at bed. I didn't titrate up, be glad you are.
I don't numb the skin for the shot.
I use the Pen now and my husband gives it to me. He was too much of a weenie to give me the needle ones and its weird but I can't give myself the Pen. I liked the control and slowness manually injecting allows.
This week is # 184.
Remember to drink plenty of fluids the day of your shot and the next. It will help.

[Robbie67]

Hi Everyone

Thanks for all ur advice and kindness. Im still nervous lol but little more relaxed. It has to be better on meds than how i been feeling last few months. Im having alot eye problems like puffy slits of eyes they look funny. Few weeks ago i had migraine n facial bad so bad they gave me steriods n some mixed drugs in IV. With this disease do u always get treated w infusions? My sight is spotty it look like i had stroke but didnt. Thanks all just venting.

LiveLaughLive

[lindaincolorado]

Hi Robbie, I was dx'd in 1988. In remission for 13 1/2 years-I practiced healing prayer and meditation. I just now took a deep breath, which I do often, as stress is not good

I was on Copaxone for 2 1/2 yrs-a daily shot-I got used to it and just accepted it as part of my life.

I have been on Tysabri for almost 7 years-it has been a blessing for me.

Good luck and best wishes

[TLC_31]

You have kids under 13 (as I do) and if you need to “hype yourself up,” just think of them. You want to be as healthy as possible to take care of them and be part of their big life events. And you would throw yourself in front of a train to take care of them … but a needle is nothing in comparison.

You also can “hype yourself up” by remembering how miserable relapses can be. Unfortuately for me, having gone seven years without a relapse, those memories are not as vivid, and they don’t provide as much incentive. Fortunately, on the other hand, I’ve gone seven years without a relapse.

I don’t want to candy-coat this. I’ve self-injected hundreds of times, but for me, shots are nothing like brushing my teeth or showering (Google “shot #269 of Avonex” for an example). I’ve never had occasion to try the Avonex Pen, partly because in the last two years I’ve had someone else that will give me a shot each week. I hope you can find someone that is able to give you a shot every now and then to at least give you a break.

The side effects could be harsh in the early injections, but you’ll be titrating whereas that wasn’t the practice when I started in 2004. Otherwise Avonex users can usually mitigate the side effects, and you have nothing to fear.

You are doing well to attack this disease. Ask questions anytime!

[Robbie67]

Update

Well my luck has it i finally recieved axonex today n saw my neuro today and my liver enzemes are high so this med i ve waiting to get i cant take.

I have been rejected for rebif for months then i get attack n they got avonex n approved but neither my family doc or neuro looked to see my liver was getting high in early june but now higher.

So now she tells me Coxpane everyday not once a week now im a reck. Sorry venting. Im angry and disgusted!!! I was dxd april out of blue n now this.... Trying to be positive but im sinking

[Mamabug]

You've been through the "wringer", Robbie, with the medical professionals deciding what med is "right" for you to try.

You've probably researched all of them by this time, and you've read all the pros and cons. Since, at this point, it looks like Copaxone is the direction you're headed, I'll tell you the pros about Copaxone. (I am currently on Copaxone, but used Betaseron, in the past, for 5 years.)

As compared to Avonex, even though Copaxone is daily, rather than once a week, what I like about it is the smaller needle. (Betaseron and Rebif also have smaller needles.)

What I like about Copaxone, rather than the other 3 injectible meds, is that it is not an interferon, so it does not come with the flu-like symptoms that the others might have.

And, best of all -- for me, at least -- Copaxone is what works for me. It was more effective (for me) than Betaseron was.

My advice is to just keep an open mind. We're all different, just as all of the meds are different. Some of us are better suited to one than another. Hopefully, Copaxone will be effective for you. And, Robbie, speaking as someone who, without Copaxone, had flares that were too frequent and MUCH too severe, finding the "right" med for me is a blessing and more than worth the inconvenience of having to inject myself.

And, I was a total needle-weenie, prior to MS. In fact, I still am unable to watch if a nurse gives me a shot or withdraws blood. So, if I could decide to "buck up" and give myself injections, you can too. (For me, the auto-injector makes it easier. Some people prefer to inject manually. I've done it both ways, and they can also both have their pros and cons.)

I think most of us are stronger than we know. If we have to do something, we find the strength, and, we can.

~ Faith

[BigA]

It gets better.

A tip? Ice the area before with a washed icepack (the kind that comes with the avonex).

Is the titration pack an old-fashioned needle or a pen? The pen is super easy. Do the needle thing for the 4 times and then you can graduate to the pen.

Don't worry. Soon you'll fear the flu symptoms more than the needle But that will get better too. None of us expected this, but humans are amazingly adaptable.

Deal with your anxiety. Meditate, Medicate, Exercise.

[Nanobaby]

Give yourself a pat on the back for fighting back!

So your liver refuses to cooperate with interferon treatment - but the fact that you CHOSE to fight back so early on, in spite of your fears, speaks great things about your character Me, I was a coward. Had my first MS attack in 2007 and literally one yearly until I decided to fight back (and also finally was out of denial about having MS) last year. It took me half a decade to overcome my own fear - the fact that you were diagnosed just 3 months ago and accepted it enough to battle this MonSter means you are a WARRIOR. You've stood up and fought and Copaxone is just your next battle - with your fighting spirit, my money is on you

[Mamabug]

...Few weeks ago i had migraine n facial bad so bad they gave me steriods n some mixed drugs in IV. With this disease do u always get treated w infusions? My sight is spotty it look like i had stroke but didnt. Thanks all just venting.

LiveLaughLive

I missed your question about IV steroids the first time I read this. IV tends to be the typical way that physicians choose to administer the high doses (1000mg) of steroids. However, you do have a choice.

Because it is difficult to find my veins to insert the IV's, I have requested that I get my steroids orally. (Once, it took 2 competent nurses two hours and six pokes to insert the IV. Since then, I've requested oral steroids instead.)

There are some disadvantages to that: oral steroids are hard on the stomach; and they taste terrible, terrible, terrible! my doc rx them in 50mg pills, so, on the days prior to my taper, I have to take 20 of them! They are extremely bitter, but, I've found that if I put them in yogurt or in pudding, that I can mask the taste.

There are also some advantages: I don't need to go in to the clinic daily to get my IV's ( I can take my oral meds at home at my own convenience). And, I believe that they are also less expensive.

As I said earlier, though. IV seems to be the "norm" for the way physicians rx steroids that are taken for MS flares.

~ Faith

[Robbie67]

To everyone that responded

Thanks to all the gave me great advise. I'm still waiting for meds. My prayers n blessings to all!!! MS World is great!!!!


LiveLaughLove