Stopping meds

[wannaquit321]

Has anyone every gone off the Avonex--& if so how did it go? Wanting so badly to quit the shots! Been doing them since '98 & it's getting hard to get the needle through the skin on my legs. I went from '78 to '98 with no episodes & was diagnosed then. That was with no meds of any kind for that 20 years!!

[carpassia]

Go on the Avonex web site I saw something on there about getting help paying for it.Right now i am on Gilenya and CuraScript pays what my insurance doesnt.Also If you can get meds from a Military Pharmacy you can fill out forms for high cost medicines and it wont cost you anything but your time and gas to go pick it up.

[tammy197238]

I did quit injections for possibly 4 to 6 weeks because I was sick of them...sick of having MS...sick of the whole thing.  My husband, parents, friends reminded me of why I needed them.
I dont want to not be able to do thing with them.  I want to be mobile for as long as I can.  I didnt want to have regret if I had an attack that led to disability that I could have prevented if I was not being selfish and wallowing in self pity.
I know its hard, but I finally resigned myself to the fact that it was something I had to do.  I had to face the fact that I had MS and was going to have to be on medication for the rest of my life for it so I might as well deal with that reality.  
Nothing happened when I stopped.  I was still tired, emotional...it made nothing better, nor worse.  But in hind sight I feel better knowing I am doing something to try to help myself and in doing that, also helping my family.  Also showing them that things happen in life and if you keep plugging away you can conquer and overcome.  I have days where I doubt my diagnosis, where I wonder if the avonex is doing anything...but I just tell myself I would rather doubt than regret.

[Avonexveteran]

I am also a long term Avonex user, been on it since June 96.  I started it following  two pretty bad attacks, the second of which landed me in the hospital and on steroids.  In all the time on Avonex I have not had any exacerbations and have remained stable.  I also have no side effects from the drug and self-injecting is little more than a minor inconvenience. In my case there is no doubt that Avonex has worked.  I expect to remain on Avonex indefinitely unless it stops working. At this time I would be fearful of going  off it.
No doubt, however, I would have seiously considered quitting a long time ago had I had to deal with gnawing  side effects including skin reactions week after week.
I do understand why you want to stop in your case. If you do decide to stop I would discuss it with your neurologist first. Like others have said there are other options.

[SarahL2491]

Egads read past the typos, I did mutter earlier about staying off this phone!

[SarahL2491]

Tysabri has had NO one die in the first year and no one who is not On multiple DMD meds.

The oral drug has had people due within 24 he's I'd taking it ( my idea of Russian roulette) and they do not yet know why

That said, we are better off being in something rather than nothing and are fortunate enough to live in a time when there are meds and choices

Putting our heads in the sand and saying we don't want to means nothing to the heartless next flare, as MS works silently 24/7, until it decides to flare.

If finances are a problem, there are many avenues of assistance, as we have discussed in other posts. However they do not chase us, we gave to go chase them

That said, going back under my crabby rock where I stay Tim my next tysabri infusion, being 5 days out and in the crabby chapter!!  :). :-)

[JaneK1975]

Because of the news stories of people dying after the first dose. Although the risk is tiny, it scares people because it's such a serious consequence.

I'm conservative, so I will probably stay on an injectable until an oral comes out that others have been on for at least five years. It's great to have people here that are on it to balance out the scary stuff we hear.

[opie74]

Why is everyone so scared of Gilenia? I have less side-effects and feel better on it?

[Ojibajo]

Okay, don't anyone scold me, but I am on Avonex and have not been taking it the past few weeks. I didn't have an side-effects on it and I have had none going off of it.

I have a myriad of reasons (and excuses) for not taking my shot:

1. I often forget.

2. I don't wanna.

3. I'm sick of giving myself shots.

4. I don't wanna.

5. It kind of hurts sometimes.

6. I don't feel like it.

7. I don't know if it is actually working or not. I don't look or feel any different.

6. It sometimes leave bruises if I inject funny and I don't like that.

7. I don't wanna.

8. Probably the biggest reason right now is that I haven't met my deductible on my insurance and I don't know how I can pay for my shots.

Part of me thinks I need to stay on DMDs and part of me thinks that I don't need them. I really don't know.  

I probably will go back on them but I want to try the auto-inject pen. Have you tried that yet or looked into it? It might be a better option.

Tysabri (IV) and Gilenia (oral) currently terrify me! I am too scared to try either one of them.

[SarahL2491]

I like Lulu am on the Tysabri and have friends on the shots.  I would not want to be tied down to the shots.  It is utter joy to only have to deal with this once a month for 2 hours and then its done..........Tysabri is also considered an outpatient procedure, if that helps anyone's insurance any, as it has to be given at an approved certified infusion center.  They do everything, you just show up and relax for 2 hrs.

Please talk to your doctor first before making this decision, Mary is right, you can get lulled into thinking you are ok because things have been going so well for so long, and once you go off and those flares see "the open and unlocked door", and come rushing in, its too late to lock the barn door!

True, it is tiring to deal with medicating ourselves but considering the possible and irreversible alternatives, is it so bad after all?

[opie74]

I took Beta for a a year.  After 10 months, the flyu like junk was every other day.  I got off to get pregnent.  After the baby, I started Gilenya.  I feel better all the way around on that stuff.  No flu like junk and less relapses.  So, what I am saying is don't just quit, demand that you change nmeds.  It does not have to be the pill, but a change might be necessary.
Ann

[twopack]

This is your decision but I'd encourage you to see if you can tough it through one more year.  I've known several people who did so well on their DMD they began to believe they must be low risk for relapse and therefore abandoned therapy.  Of course I'm telling you this because they relapsed - usually within a 6-12 month window.  Symptoms are a very difficult problem to stuff back into the box they spill from.

I saw my MSologist last week.  He told me he expects to switch me to a new oral drug (BG12) next spring.  It is taken twice daily and few (if any) side effects are being reported.  It isn't available yet but docs at the clinic where I receive care must be impressed as they aren't normally very quick to switch people over to new drugs for novelty sake alone.  They usually like to observe post market release performance before trusting us to the unexpected problems that always seen to appear when drugs are first used outside the tightly controlled environments of clinical trials.

I'd try to gather your thoughts and maybe do a little research on your own about options and then have a heart-to-heart with your doc.  Maybe he would be willing to help you consider some options if he sees your struggle between what looks best for your present vs your future.

Mary

[TLC_31]

First, contrary to what maxthecat wrote, this is from the Avonex medication guide: "AVONEX PEN should only be injected into the muscle of your upper, outer thigh."

Anyway, I hate the shots too, so I completely know how you feel … although I’ve been taking them only half as long as you have.

I tried Gilenya for 19 days last fall, and the side effects were prohibitive for me, but if you’re clear of heart issues or other reported risk factors you might give it a chance, because people have been successful with it.

If not, perhaps having a care partner trained (for the backside and/or arms) or getting set up with the Avonex pen would make it easier for you to bear with the drug a little longer, at least until BG-12 or Campath are available options. I’m thankful that Avonex works for me and that I was able to fall back on it (as you would be able to as well), although I no longer give myself shots.

[maxthecat43]

I haven't been taking Avonex for nearly as long as you have, but I sincerely believe that staying on some sort of dmd is very important.  You can get a prescription for an Avonex pen, and that would give you more areas to inject than just your legs.  That would make your upper arms, and back of you upper hips available too.  That may temporarily solve your problem.  The other three injectables are sub-Q.  That way you can inject in other areas than just your legs.  

You could also ask about Tysabri.  An infusion once a month may be just what you need.  You been diagnosed long enough, that it shouldn't be a problem.  

The evidence shows that using a disease modifying drug slows down disease progression.  It may well be that your stable disease is due to taking your Avonex.  Please do your own research first and don't jump off your dmd without fully considering all the implications.

Sincerely,
Tammy

[CinquantaCinque]

New member here...

Diagnosed in '94, immediately put on Beta and had to stop a year later due to major side effects.  Tried Avonex for a while, put on Copaxone, then back on Avonex since '99.  I am so done...I want to wake up the morning after a shot a not feel like I have the flu.  I forgot what that feels like.  Question is, how do you convince your doc you want to stop?  Thank you, wannaquit 321, for starting this discussion.

CC

[wannaquit321]

I sometimes wonder if my dx is right--first episode was in '78, then nothing until '98. After that one no more episodes have ocurred, but I have lesions, disc problems (my back is the worst part of my troubles), tiredness, vertigo--but I'll bet most or all of these could be attributed to other illnesses as well.

[Lulu54]

It is a good thing that your doctor says you are stable, but if you aren't able to  continue the avonex for whatever reason, that could easily change.  Please go back to your neuro and stress what you have told us here.  good luck.

[wannaquit321]

Thank you for the suggestion. I did ask about the new pill form that's out, but they siad they want a longer study of long term effects before prescribing it for any patients who are stable.

[Lulu54]

I've not been on Avonex, but from all the comments here and the research I have done, I can udnerstand why you might be weary of doing this particular drug.

Please give your neurologist a call and discuss it with your medical team.  They may have other options for you or even recommend the Avonex pen autoinjector  to help.

I became weary of the daily Copaxone shots, my body decided it didn't like it, and am now on the monthly tysabri infusion.