Lisa_P
04-25-2008, 11:33 PM
I'll be starting Rebif soon. Joy. I'm really not looking forward to more shots, but... So we'll see how long it lasts. I think my Medicare D program has a limit on how much will be paid. The last statement I got said I had $3500 or so left in this fiscal year. We;ll see how far that goes.
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MSJayhawk
04-25-2008, 11:49 PM
You might check into funding programs for meds if that is your route. Speak to your doctor about your trepidations about financial burdens as your doctor might be able to assist you in obtaining a source.
april1848
04-26-2008, 08:06 AM
Rebif probably has a financial assistance program. I'm on Avonex and I know they do. Nikki probably knows, maybe she'll come in soon.
Good luck! I have what I call "shot fatigue" and it's only been 6 months, but I don't think I've had any relapses, just bad days.
Good luck! I have what I call "shot fatigue" and it's only been 6 months, but I don't think I've had any relapses, just bad days.
MSNik
04-26-2008, 03:11 PM
Hi guys, yes, Im here. Lisa, Serano, the manufacturer of Rebif has a first year program. They will pay the ENTIRE amount of Rebif (which by the way is about 1900$/per month) for an entire year if you qualify and being on Medicare does qualify you....please look into Rebif and get the info to get you started~! You can also call MSlife lines, which is the host of the program and of Rebif in general...they are the ones who will send a nurse out to your house and educate you on the drug.
I love Rebif, and in 18 months, no new lesions...no real relapses...just a few reoccuring symtoms which never truly have gone away. Times they are worse then others..but overall, I LOVE Rebif.
When you start, Ill be here to help you thru it...meanwhile, stock up on Aleve...one pill 1/2 before the shot lasts 12 hours...
Dont sweat it, its not the end of the world, and its not that hard to get used to. Ill help ya. Promise.
Nikki
I love Rebif, and in 18 months, no new lesions...no real relapses...just a few reoccuring symtoms which never truly have gone away. Times they are worse then others..but overall, I LOVE Rebif.
When you start, Ill be here to help you thru it...meanwhile, stock up on Aleve...one pill 1/2 before the shot lasts 12 hours...
Dont sweat it, its not the end of the world, and its not that hard to get used to. Ill help ya. Promise.
Nikki
MommaEMS
04-27-2008, 12:27 AM
Hello,
I am also starting Rebif next week. We can learn to do this together! I'm so thankful for everyone's imput. It's quite a help to know we are not in this alone and if we have any questions someone has been there done that!
Thanks,
Momma:)
I am also starting Rebif next week. We can learn to do this together! I'm so thankful for everyone's imput. It's quite a help to know we are not in this alone and if we have any questions someone has been there done that!
Thanks,
Momma:)
maxmadd
04-27-2008, 10:51 AM
My Rebif is coming on Tues. but still need a nurse to come. Hopefully MSLifelines calls soon with a time for the nurse to visit. I just want to get started. The wait is hard. I am sure we can all help each other get through.
K
K
MSNik
04-27-2008, 11:46 AM
Hi everybody, I wish you all the same luck and success I have had on Rebif! When you all have seen your nurses and started the shots, if you have any questions, please DO shout out here and Ill be happy to lend some experience to you. Ive been on Rebif now for 18 months and have not had any new lesions appear, and have been thru everything from learning how to do this on my own (my husband started out doing it for me) to dealing with side effects..
Lots of good information to pass from trial and tribulation- so think postiively and keep us informed of how your doing!
Hugs
Nikki
Lots of good information to pass from trial and tribulation- so think postiively and keep us informed of how your doing!
Hugs
Nikki
Lisa_P
04-29-2008, 05:42 AM
I know it's coming soon. A few days ago I got a call from Medicare saying my prescription was approved (recording) and yesterday I got my Rebiject II from Fedex... I better watch the DVD thing today, huh!
MSNik
04-29-2008, 08:36 AM
The video is helpful, Lisa....however I found that the Rebiject is helpful on hard to reach areas, while its still easier to inject without it in areas like the stomache and thighs...time will tell for you. The injection doesnt hurt- it does burn for about 20 seconds while the medicine enters the skin, which is why the rebiject is helpful, too...it makes it fast. And, it eliminates you actually seeing the shot (if that bothers you). Youre going to be fine! Did you call about the year of free medicine? Its out there if you want it..
Hugs
Nikki
Hugs
Nikki
MommaEMS
04-29-2008, 01:59 PM
I just got off the phone with MSLifelines and the injector should be delivered today as well as the meds. Still haven't gotten a call from the nurse. I'm sure it won't be hard to learn its just waiting for it all to happen. Thanks for all the positive imput we can get through this taking it one day at a time.
Any suggestions as to what days are best for giving the shots? I work full time at a school so I have to think of that too.
I'll let you know how it goes. Thanks again.
Momma
Any suggestions as to what days are best for giving the shots? I work full time at a school so I have to think of that too.
I'll let you know how it goes. Thanks again.
Momma
maxmadd
04-29-2008, 02:22 PM
Hi everyone,
it is reassuring that there are a few other people starting Rebif at the same time. My meds came today and the nurse is coming Fri. MSLifelines called very quick after I gave them a delivery date. I liked that. Anyways, now that my sharps box is here, alcohol swabs, meds... it is all getting very real. I know soon it will be a regular part of my week but right now I am getting a bit nervous. I wish everyone the best.
K
it is reassuring that there are a few other people starting Rebif at the same time. My meds came today and the nurse is coming Fri. MSLifelines called very quick after I gave them a delivery date. I liked that. Anyways, now that my sharps box is here, alcohol swabs, meds... it is all getting very real. I know soon it will be a regular part of my week but right now I am getting a bit nervous. I wish everyone the best.
K
MommaEMS
04-29-2008, 03:41 PM
The nurse just called and she'll be here on Thursday. It's really going quickly, hopefully I'll keep so busy that I won't have time to think about it. lol
Some day we can look back and ask "what was I so afraid of?"
Thanks for listening. God Bless,
Momma
Some day we can look back and ask "what was I so afraid of?"
Thanks for listening. God Bless,
Momma
MSNik
04-29-2008, 03:52 PM
Max and Momma- Just wanted to remind you both that you are NOT alone. It wasnt that long ago that I went thru EXACTLY what you are going thru now...and looking back, its been almost 18 months since I started REBIF!
The nurses are great from MSlifelines and dont be afraid to ask questions or ask them to come back again and again...one thing I want to make really clear to you both, is have someone who can be with you when she is there...theres alot of info, and you might be overwhelmed and forget some of it, so having someone there really helps....also, LEARN TO DO THIS YOURSELF! In the beginning, it was so much easier for me to let my husband do this for me...I depended on him doing it. Ill spare you the long story, but about 3 months into my shots, he wasnt available to do it for me. I ran out of the house, taking my syringe to the local hosptial asking them to do it- they wouldnt. I called all my friends, asking them to help- they wouldnt. I was so upset! Long story short, I came home and jabbed myself in the arm. Ive never looked back. Being able to control my own medicine has allowed me to go away on business alone, allowed me to feel like Im controlling my own destiny as far as my MS goes- and given me a confidence that I didnt know I had. MS is scary, but in the end, the only person we have to depend on, is US. Learn to do this by yourself so that you never have to be in the position I was in, when I started...
On a happier note- 18 months later, NO NEW LESIONS and I saw my doc today who is thrilled yet again that Im doing so well. I really love Rebif- and even though the side effects arent great in the beginning, they wont kick in until you are into your third of fourth week...the original package you are sent, is a titration pack. Meaning, youll only give yourself 7 mcgs of the medicine the first 2 weeks, 21 mcgs the second two weeks and then go to fulldose, which is 44 mcgs....until it starts to build up in your blood stream, you shouldnt have side effects...so your first 12 shots should be very easy for you...when the side effects kick in, they only last 6 hours- so do it at night and sleep thru the worst of it. TAKE ALEVE which lasts 12 hours....so much better than Tylenol or Advil..(ask the nurse) and look forward to the day when they stop completely. For me, it took about 4 months and no more side effects! Youre entering a new world, however it is a world where you are now taking control of your MS, and not allowing it to take control of you. You have to look at this as a positive thing.
Let us know how you are doing...and no fears- youre joining the ranks of us Interferon Takers who are doing very well!
Hugs
Nikki
The nurses are great from MSlifelines and dont be afraid to ask questions or ask them to come back again and again...one thing I want to make really clear to you both, is have someone who can be with you when she is there...theres alot of info, and you might be overwhelmed and forget some of it, so having someone there really helps....also, LEARN TO DO THIS YOURSELF! In the beginning, it was so much easier for me to let my husband do this for me...I depended on him doing it. Ill spare you the long story, but about 3 months into my shots, he wasnt available to do it for me. I ran out of the house, taking my syringe to the local hosptial asking them to do it- they wouldnt. I called all my friends, asking them to help- they wouldnt. I was so upset! Long story short, I came home and jabbed myself in the arm. Ive never looked back. Being able to control my own medicine has allowed me to go away on business alone, allowed me to feel like Im controlling my own destiny as far as my MS goes- and given me a confidence that I didnt know I had. MS is scary, but in the end, the only person we have to depend on, is US. Learn to do this by yourself so that you never have to be in the position I was in, when I started...
On a happier note- 18 months later, NO NEW LESIONS and I saw my doc today who is thrilled yet again that Im doing so well. I really love Rebif- and even though the side effects arent great in the beginning, they wont kick in until you are into your third of fourth week...the original package you are sent, is a titration pack. Meaning, youll only give yourself 7 mcgs of the medicine the first 2 weeks, 21 mcgs the second two weeks and then go to fulldose, which is 44 mcgs....until it starts to build up in your blood stream, you shouldnt have side effects...so your first 12 shots should be very easy for you...when the side effects kick in, they only last 6 hours- so do it at night and sleep thru the worst of it. TAKE ALEVE which lasts 12 hours....so much better than Tylenol or Advil..(ask the nurse) and look forward to the day when they stop completely. For me, it took about 4 months and no more side effects! Youre entering a new world, however it is a world where you are now taking control of your MS, and not allowing it to take control of you. You have to look at this as a positive thing.
Let us know how you are doing...and no fears- youre joining the ranks of us Interferon Takers who are doing very well!
Hugs
Nikki
MommaEMS
05-02-2008, 12:51 AM
What a great day I had today! The nurse called me at work and told me she was getting close to my home so I left work and met her at the house. She was wonderful! So kind and patient with my questions and my fears. My husband was with me so I would have help remembering what she said. And Nikki I gave myself the shot! My husband wanted to help and do it but I remembered your post and decieded that at last for the first one I had to do it myself. It was fast and I have felt great all day. Wow all that stress and worry for nothing! I know the first few doses are small but hopefully the rest will be just like this.
Thank you all for you prayers, they are working just like I knew that they would.
Max let us know how you do, I know it will be fine. I'll be thinking of you!
Good night and God Bless!
Momma
:angel:
Thank you all for you prayers, they are working just like I knew that they would.
Max let us know how you do, I know it will be fine. I'll be thinking of you!
Good night and God Bless!
Momma
:angel:
Nenu
05-02-2008, 03:24 AM
Momma that's great news! I'm proud of you :) Hopefully I can be as brave as you were. I'm going to try and do it myself, because you've inspired me to do it. Hugs :)
MSNik
05-02-2008, 09:14 AM
Hi Momma. Im very proud of you and thrilled to hear you consider today a "great day".
When I was in your position, starting out and first being both dx and starting REbif, so many people here got me thru the rough first few months...and there will be days when it IS rough. But, those days pass, and eventually you get to the point (like me) where a shot is absolutely nothing to do other than "fit it in". Like yesterday, for me...I had a huge day/night planned. IT was shot day for me ( I stick with Tues/Thurs/Sun schedule)...I actually am in sales, so I was not far from my house, I ran it at lunch, banged the shot real quick into my leg and turned around and left, only to cover another 200 miles that day before nightfall. No problems, no side effects...remember these stories, because on the day when you feel terrible, youre going to need to believe there is light at the end of the tunnel- and there is.
Im really proud of you. Thank you for letting me know that you thought of my posts...
Hugs
Nikki
When I was in your position, starting out and first being both dx and starting REbif, so many people here got me thru the rough first few months...and there will be days when it IS rough. But, those days pass, and eventually you get to the point (like me) where a shot is absolutely nothing to do other than "fit it in". Like yesterday, for me...I had a huge day/night planned. IT was shot day for me ( I stick with Tues/Thurs/Sun schedule)...I actually am in sales, so I was not far from my house, I ran it at lunch, banged the shot real quick into my leg and turned around and left, only to cover another 200 miles that day before nightfall. No problems, no side effects...remember these stories, because on the day when you feel terrible, youre going to need to believe there is light at the end of the tunnel- and there is.
Im really proud of you. Thank you for letting me know that you thought of my posts...
Hugs
Nikki
maxmadd
05-02-2008, 09:38 PM
Hi everyone,
it is done!! Nurse came. She was so nice. Explained everything and then I gave myself the shot! I was surprised how little it hurt. I am so happy to get over that hurdle. We will see how it goes. Hopefully side effects will be minimal. Thanks everyone for all the info and encouragement. Hearing how well others are doing really helped. Thanks, K
it is done!! Nurse came. She was so nice. Explained everything and then I gave myself the shot! I was surprised how little it hurt. I am so happy to get over that hurdle. We will see how it goes. Hopefully side effects will be minimal. Thanks everyone for all the info and encouragement. Hearing how well others are doing really helped. Thanks, K
Nenu
05-02-2008, 10:53 PM
Congrats to you too Madmaxx! Great job! :) Hugs!
MommaEMS
05-02-2008, 11:34 PM
MaxMadd I'm so glad to hear you had a great experience too! The unknown was much worse than the reality don't you think? Together we can do so much more than alone. Take care and God Bless!
:angel:
Momma
:angel:
Momma