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Old 12-12-2009, 10:25 PM   #1
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Rem4 HB User
Depressed and confused feeling lonely

Few weeks ago I stopped my Rebif therapy as MS Life Line did not want to let me continue to be on the program of $50 co-pay.
My nero told me about Betaseron that have 0 co-pay, but told me that I will need to mix the medication, now I found out that I will need to inject every other day with no breaks (with Rebif I had the weekend off) I received my training kit and became overwhelmed, seeing the meds the mixing that I will have to do, and got scared. I donít want to be a nurse or a pharmacist to do all the mixing, I am depressed and on the verge of crying all the time, and all this before I even started the meds. The trainning nurse supposed to call next week.
Now I am about 3 weeks with no meds and I feel good, and I am thinking what if I stop all this medication all together???? I feel alone, I feel lonely I feel sorry for my self and I donít know what to do.
I don't know if anyone can help me, but I needed to express my thoughts and feelings.

 
Old 12-13-2009, 06:20 AM   #2
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Re: Depressed and confused feeling lonely

Hi Rem. Sorry to hear you are feeling this way. This time of year, its especially easy to feel overwhelmed, even alone- even in the midst of having 10,000 things to do-

I want to ask you, what happened with MS lifelines and the co-pay? I have a job, a pretty good job, and my husband also has really good benefits- and I still pay the 50$ co-pay. What was the reason that you were told you couldnt continue with Rebif? You really MIGHT want to look into that further. I know of about 20 people who dont have serious financial issues- who still get the 50$ co-pay....if Rebif is what you want to stay on, then there are people you can call at MSlifelines who advocate for you and will help you.

As for the Betaseron. It does come pre-mixed. The old formula wasnt....but the new formula is. I dont know if they are requiring you to use the old formula to qualify for the 0 co-pay...Ive never used Betaseron, but I absolutely am positive it comes in a premixed syringe, exactly like Rebif does. Can you inquire about that? Make your life that much easier?

As for the big question- youre feeling good now and are thinking about stopping meds altogether. Is that really a chance you want to take? First of all, it takes 8 weeks for Rebif to get out of your system...so, if its only been 3 weeks, chances are, you are still getting benefits from the Rebif. Secondly, MS is crazy. We all know that! We can go for a year of feeling good, but when a excaberation hits- when a new lesion develope, it can be seriously bad, permanent damage. By staying on one of the drugs, you are increasing your odds of that NOT happening...not having a new lesion develope, or a new relapse happen. Or, you might be lucky. Your disease might be in remission mode, and youll stay feeling good for quite some time.

There are no guarantees with MS. Most people do relapse and remit.....and its the meds which are supposed to control that. Not having them in your system is asking for more relapses, generally speaking. BUT again, every case is different.

If you choose to do the Betaseron, dont make up your mind until you talk to the nurse. With Rebif you did it 3 shot a week, with Beta, its only every other day. Only one more shot per week...and guaranteed, youll get used to it quickly. I know people who love being on Betaseron- just like I know people who are perfectly happy with Rebif. Rebif is the stronger of the drugs though. Just talk to the nurse and understand how this drug works and why you have to premix it...and maybe talk to your doctor about ordering the already mixed version?

Rem, you are NOT alone. We all go thru days and weeks when this disease makes us depressed and overwhelemed. Talk to us and we will try to help you...but right now, focus on doing what makes you happy. You can always start back on a drug later, if you choose to go that route.

hugs and sending you continued health.
Nikki
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Last edited by MSNik; 12-13-2009 at 06:21 AM.

 
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Old 12-13-2009, 09:34 AM   #3
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Re: Depressed and confused feeling lonely

Rem, you are not alone. There are so many of us out there going through the same things you are. I am so new to this so I really can't offer you any wisdom, only support. It does feel overwhelming at times but I get on this board everyday and read all the new messages and don't feel so alone. I don't have anyone at home that understands, but feel like I have a whole family here that I can talk to anytime.

I just started on Rebif and medlines told me that the $50 copay was for a year, but if I needed help just to call anytime and they will always work with me. They really seemed to care. Just give them a call.
Hang in there!

 
Old 12-13-2009, 11:41 AM   #4
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Re: Depressed and confused feeling lonely

You are not alone. Depression most easily pops-up whenever we answer a pity-party invite. Just write "return to sender" and live your life the best you can. As for meds, well, you need to do what you feel the most comfortable doing. BUT you need to take one step forward each day, no matter how small a step. I will keep your needs in my prayers.
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Old 12-13-2009, 06:17 PM   #5
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Rem4 HB User
Re: Depressed and confused feeling lonely

Thank you Nikki for your lengthy answer. To answer your question I was on the MS Life Line Assistance program but after one year I needed to renew it. I wrote them a letter, had it notarized as per their requirement and I was denied, I appealed with phone calls and following letter and again was denied. I even told them that on their web site , one can qualify if they are not on Rebif for the last 3 months, told them that I can stop for 3 months and then apply again, it did not help. Even the nurse from the doctor office called them but they said I was denied.
This how it came about to change to Betaseron.
I do not think that the Betaseron comes pre mix but I will ask.
As per being on the meds, I took Copaxone for one year then I switched to Rebif for another one year, all my symptoms are still there, and some times I thing that walking and balancing is a bigger challenge. So I am not sure it is helping me. During the year I did have the flue symptoms they never went away, and only recently the injection sites was getting better.
I appreciate your respond and now I feel that I am not alone, but in life I am alone, everyone is busy with their lives and I have to struggle on my own. I know my husband loves me and he says I am not alone….but the real reality I am alone against this giant MS.
Bhmomof2, thanks for you answer, and good luck with Rebif.
MSJayhawk, thanks I wish I could return MS to sender, too bad it does not work that way. Easy said then done to switch off my depression, I spent most of this morning crying.
I hope next week will be better.
Hugs to all
Rem

 
Old 12-13-2009, 08:09 PM   #6
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Re: Depressed and confused feeling lonely

Hang in there Rem and keep talking on here to us. There seems to be always someone here with the right words to say when those people in our lives at home don't understand.
Wishing I could box up all the rebif syringes I have here and send them to you. I hate the stuff so far. I just promised my husband that I will keep trying to hang on until the next neuro appt. in Jan. before I quit. But it has made me feel bad about 24 hours after each injection and then when I finally get to feeling better it is time for another shot.

Wishing you a Marvelous Monday and know we are here for you.

 
Old 12-14-2009, 08:45 AM   #7
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Location: San Diego, CA, USA
Posts: 75
Rem4 HB User
Re: Depressed and confused feeling lonely

I also felt bad in the begining of the treatment, take Tylanol, Advil or Alive ( I like ALive the best) not more then 2 hours after the injections and you will feel better,good luck.
Rem

 
Old 12-14-2009, 06:52 PM   #8
Member
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Join Date: Sep 2007
Location: San Diego, CA, USA
Posts: 75
Rem4 HB User
Re: Depressed and confused feeling lonely

Thank you Nikki for your lengthy answer. To answer your question I was on the MS Life Line Assistance program but after one year I needed to renew it. I wrote them a letter, had it notarized as per their requirement and I was denied, I appealed with phone calls and following letter and again was denied. I even told them that on their web site , one can qualify if they are not on Rebif for the last 3 months, told them that I can stop for 3 months and then apply again, it did not help. Even the nurse from the doctor office called them but they said I was denied.
This how it came about to change to Betaseron.
I do not think that the Betaseron comes pre mix but I will ask.
As per being on the meds, I took Copaxone for one year then I switched to Rebif for another one year, all my symptoms are still there, and some times I thing that walking and balancing is a bigger challenge. So I am not sure it is helping me. During the year I did have the flue symptoms they never went away, and only recently the injection sites was getting better.
I appreciate your respond and now I feel that I am not alone, but in life I am alone, everyone is busy with their lives and I have to struggle on my own. I know my husband loves me and he says I am not aloneÖ.but the real reality I am alone against this giant MS.
Bhmomof2, thanks for you answer, and good luck with Rebif.
MSJayhawk, thanks I wish I could return MS to sender, too bad it does not work that way. Easy said then done to switch off my depression, I spent most of this morning crying.
I hope next week will be better.
Hugs to all
Rem

 
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