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Posted 7/15/2008 4:54 AM (GMT 0)
  confused Hi to anyone that can help me with my questions.  I am going to be going off my Avonex shots because my husband is retiring and we can't afford for me to continue my shots.  Insurance doesn't pay enough to make it feasible and I'm on SSI and I don't make that much. First, has anyone went off Avonex?  Did you have immediate reactions to MS symptons?  I see someone wanting to have a baby said about weaning off, how does one do that?  Now I know about some sights for people who can't afford and I've check them out and we own too much and my husband won't settle for less.  So far from divorcing him ( which he has stood my me) which is not an option I can't find any sights that can help.  We don't have a lot of cash or savings.  But I am beyond and I am so disillusioned I don't know where to turn.  I am open for any information about any sights that I could get help from.  I just don't know where to turn.  My neurologist didn't say anthing about weaning me off the shots.  So that was a welcome shock.  My doctor just said I had to do what I had to do, and so I have felt pretty alone in my decisions.  Thanks for listening if nothing else.  GranmomJB
Posted 7/15/2008 5:01 AM (GMT 0)
Hey GranmomJB

Welcome to the board. I"m so sorry to hear of u'r need to discontinue avonex. Have u contacted u'r doc's office to see if they can lead u in any direction of help with this?? Many times doc offices have someone especially designated for finding financial help or other sorts of med/pharm help in special cases like u'rs. Also, don't just lean on u'r neuro and their office for help. Talk to u'r primary care doc as well and see what they can do for u. U also may want to contact u'r local MS Society chapter to see if there is some support or help they can point u to.

I'm sorry i can't help u on u'r question. I don't have ms, but others here have used this med and may be albe to help get u answers. Please do take care of u'rself and let us know how u'r doing.
Posted 7/15/2008 5:52 AM (GMT 0)
Hi Rhonda...I did talk to my doctor and he felt for me and had no answers for me.  Neither doctor had any avenues for me to check out.  MS society in my state couldn't help me a few years ago, but it's worth a try again.  I try anything and everything and I hope I'll find the answer.  I know I'm very depressed about all of this, but I am still trying to find the answer.  I was hoping someone on line might have an answer for me to check out.  Thanks again, GranmomJB
Posted 7/16/2008 4:33 AM (GMT 0)
Sorry Granmom JB,
That's a crummy place to be. I did go off of Betaseron once and Avonex once as well and didn't wean off, just quit. I felt like it took a few months, but then I did notice more symptoms popping up. So, as you read in earlier post, I'm trying to get back up to a full dose of Avonex. (if you lived nearby we could order extra syringes and split the dose for a while, hee hee, kidding Gretchen!) But I do feel bad wasting some of it as I work my way up. With that said, I think if I were you I'd get as many full doses as possible and then quit, rather than weaning- but maybe others here will have other experiences.
Do try your MS society again- I have used two of there other programs and they were not dependent on income or assets strictly for qualifying. Also- is copaxone any cheaper and/or have you ever used it? Willow
Posted 7/16/2008 5:11 AM (GMT 0)
Hi Willow...Thanks for info. I'm in a place that any info. help makes me feel not quite alone.  It's a scarey place and I really don't want to be here, but I can't ask my husband to work longer.  He's going on 70 in August and I feel he needs a well deserved rest.  I just don't want to lose my quality of life.  I don't mind problems because that goes with MS, but I don't want it to throw me into total bedridden or blindness like I had 10 years ago.  That time my sight came back, but one never knows.  I know I sound selfish and I feel horrrible for feeling this way.  But thanks again because it does help.  GranmomJB  

Posted 7/16/2008 10:12 PM (GMT 0)
Hi
Do you have medicare? I heard that if you get shots in the doctors office the Avonex is covered under part B medicare.everything needs to be done in the Doc office once a week.
Posted 7/16/2008 11:45 PM (GMT 0)
Hi to all,

GranmomJB I had just started getting my Medicare and was so shocked at how much the Betaseron was going to cost me 465 per box. Till I reached 4000, then Medicare would pick it up after that. Well that seemed next to impossible to do that so I went to ms pathways and found some #s to call.

Well in giving them some info about out income and how much out of pocket is spent each month and what our income for the year and how much medical was spent out of pocket. I got the help I needed to pay for my meds. Instead of 465 per box I pay 50.

So maybe you can get some help that way also It worked for me, I'm sure it will work for others.

Take care
Tinydancer
Posted 7/17/2008 12:41 AM (GMT 0)
TinyDancer:  Thanks, I'll check it out.  I hope this works for me.  I'm on SSI and my husband is still working, so I hope we can get some assistance.  By the way, which prescription plan did you sign up with for MS?  The one I checked would I had 2200.00 and then I needed 7800.00 before any extra payment with plan.  Thanks for help.  GranmomJB tongue

Posted 7/17/2008 7:46 AM (GMT 0)
hey I am weaning off avonex and so far so good! It just seems such a waste to be throwing away half my meds when there are so many out there that can use it! Anyway, I am doing a half shot for 3 months and then a shot every other week for 3 months. So six months all together to wean. Not fun but probably the best thing for me now b/c my white blood cells are getting low and all other side effects from the avonex. I know there are a ton of programs out there to help people in your situation it just takes a ton of research. Also, just b/c you come off your meds does not mean automatic relapse. Our meds are not a cure they just prelong the illness so it takes longer to get at us. So you might not have a relapse for years or you might have one right away. Just try to think positive and maybe it won't be as bad. What state are you in? I know different states have different programs. Like I am from Illinois and I know a few places you can go for a free shot (pain in the butt lines but whatever). I hope you find the answers you are looking for!!

Posted 7/18/2008 12:50 AM (GMT 0)
hi I am not sure if you were on other meds before Avonex but it seems like most of the MS meds will give you one year free if you are just starting their med and have limited resources. Maybe you can switch to one you have never been on and take that for 1 year.
Posted 7/18/2008 5:33 AM (GMT 0)
HI sanddune...I am interested in your comment about Avonex being covered if being administered in the doctors office under part B.  I wish I could find out and find out how much it would cover.  I'm not sure my doctor would do it, but it sure would be worth it to me.  I'm getting tired of giving myself my own shot after 10 years on Avonex.  If anyone out in internet land knows please inform me so I know what to ask medicare.  I will be going on medicare B and D when my husband retires.  That is why I am going to have to go off my shots, because under D I haven't found any insurances that would cover enough of my shots so I could afford them.  Thanks again, At least you have given me my first glimmer of hope.  Thanks again and etc. GranmomJB yeah

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