Jim has made a decision to stop Betaseron
 

He finally made his decision. It's been a little over a month since he stopped Betaseron and he feels much better. He really didn't stop, but was taking time off because he wasn't doing well weening off the Dantrolene. But we talked about it and he said he's done with it. He will give it one year and then have a MRI done and if it shows no new lesions he will stay off the shot. It took him a long time to make this decision and it had to be on his own. Yes, there are risks because maybe it is working, but there's also a chance it's not. We may request the antibody testing to be done in the spring just to be more sure.

The good news is now he can ween off Zoloft since it was the Beta causing his depression. Next week we go down to Springfield to hopefully get our medical cannabis bill passed. If that happens Jim may be able to get off almost all his medications! He hates the Methadone.

So that's Jim's update. If anyone is interested in watching our bill get pulled for a vote you can go to ILGA.gov and watch it live in the House. Our sponsor Rep Lang plans to introduce patients and Jim is one of them.

That's a big decision, and it certainly sounds as though he didn't make it lightly. I hope all goes well. Sometimes a friend will ask me if the Copaxone is working, and I'll think "How would I know?" You and Jim will be in my prayers.

Thanks B2Y and Sally. It took him years to make this decision so it was well thought out. And it's not the end all either. If in a year his MRI shows active lesions, then he'll be more than happy to go back on it. For now, we'll wait and see. Maybe by then research will have found something better. He's taken these shots since 1988 and still ended up in the wheelchair so who knows? He's SPMS and flairs never come anymore. Seems the shots are best suited for those who have frequent flairs and it helps slow the progression. Guess he's doing his own study. :wink:

stopping copaxone was one of the hardest and best decisions I made. Good luck! :hug:

Hope that Jim continues to feel better now!!

:circlelove: (((((Jim))))) :circlelove:

Stopping Beta was one of the best decisions I ever made. I hope Jim starts to feel better. Sometimes giving our bodies a rest from the assault of all these medications that are supposed to be helpful is the best thing we can do. I wish him the best. :hug:

Thanks you guys. :hug:

hi sandy, and jim,

thanks for the update.
i hope jim holds his own off the shots.

you both have a great x-mas season. :hug:

I will be watching Springfield next week when I can. Is it scheduled for the 30th? Hope it goes well!

That is a long time doing the Betaseron shots. I'll be sending good thoughts and prayers Jim's way. :)

Too many drugs can be worst than taken a lesser amount of drugs. JMO
Best of luck to you Jim.


I stopped Avonex and then Copaxone after many years. I have no new lesions since I stopped the injections. Then I went on LDN.

Barb, the bill will be pulled Tuesday the 30th but I am not sure what time. Lou Lang will be introducing some patients in his speech. I have also been told the Civil Union and Death Penalty bill will be pulled that day as well. Going to be an interesting day! Watch live at ilga.gov (click audio/video under House).

Montel Williams will also be here. He's coming in Monday night and meeting with Lou and some on the fence reps Tuesday morning. If he sticks around he can sit with us in the speaker seats if he'd like. I hooked us up in the invite only seats. Helps I live next door to the former speaker of the house! :D

I can empathize with Jim on this issue. If I get to the point of SPMS I'll stop the meds too because at that point they don't really have much evidence of working since they're mostly for relapses. I haven't had a relapse in more than five years so I might actually be there too, but I have my head in the sand and I'm still working, and say my prayers all the time that I can continure.

Jim is awesome and I hope this will improve his qol. I know if I need to retire either voluntarily or not, I'll likely stop with the Nuvigil since that is the med that keeps me working.

God bless him and you too for all you do for the rest of us with your wonderful examples. :grouphug: :grouphug:

Jim, I hope it all goes well with stopping the Betaseron. 10 years is a long time.

I'm pulling for you folks over there in Illinois!
We are still fighting the legislature here in Maine. They changed the nature of our MM laws by requiring patients to register with the state. I refuse to do it. I am hoping we can get that changed because I do not trust the state to ensure that my information remains private. I also do not like the police having access to the registry. I will be an outlaw after Jan 1st, because I will only be using my doctor's letter, and NOT getting any freakin' ID card from the state!


Many of the places that have been chosen for dispensaries and growing facilities have enacted moratoriums on opening the centers. There are NO dispensaries in place yet, and we voted for this a year ago.

The state is now going to charge a sales tax, the towns where the dispensaries open want to charge licensing fees and security fees and who knows what else they will try to put on them before we get even one open.

There's a fee for caregivers to carry and dispense or grow, it is set at $300.00 if they do the growing and $100.00 if they are just procuring it from a dispensary. It makes me sick to see what is happening to what was supposed to help patients gain easier access to MJ rather than looking for it on the street.

Keep your eyes on your state legislature if it does pass!

Thanks Wiz!!! I hope you continue to do well!

RW, girl we may have to amend ours to satisfy everyone. The dems let us down and so did the republicans on this. We got mudd in the face but was able to postpone until January. My neighbor is the former republican speaker of the house and got us the speaker seats and Montel showed up too. Debbie was there with us as well. My neighbor is mad and plans to find out why the dems failed us and why the republicans were ao cruel with their dope head analogy. Let's hope he can do something! We are meeting with Lou Lang sometime this week to figure things out and how to get this passed when lame ducks will most likely be absent. :(