1st diagnosed with RRMS 2009 have used Copaxone Rebif and now Avonex.
Have been told by doctor that we are now looking at Secondary Progressive. He is not yet changing Medication and I have next appointment in Jan 2018. Currently on Avonex. I feel that Avonex is not a correct Medication. What have others used at this stage.
I understand, maybe Avonex just isn’t strong enough. Talk to your neurologist about the different meds. Keep us informed. Good luck..
chickadee59 , if you are seeing steady progression, you may want to consider Ocrevus. It has demonstrated the best success at halting or slowing progression. It also has one of the best safety profiles of the MS drugs currently in use, yet it is considered an aggressive treatment. Rituxan should be similar. I am considered Primary Progressive and started on Ocrevus in June. Other than mild to moderate infusion reactions and a week of feeling crummy after infusions, I've had no issues. Most people don't have much if any trouble with the infusions, I just tend to react to everything - lots of autoimmune stuff going on.
chickadee59 , I’m sorry for the diagnosis, but agree that a talk with your neurologist may be in order to discuss Ocrevus.
We hope you’ll keep us informed about how you’re doing.
Thank you, That is a med I will need to research.
chickadee59
I was just reading in MSSA that SPMS treatment depends on whether you are also still having relapses. Then any of the DMTs, but more likely 2nd or 3rd generation and not the interferons But it's all individualized.
I believe I have SPMS and last visit the neuro said Ocrevus was pretty much the only suitable DMT. I'm not on any and still watching how others respond to it (which has been promising so far)
Welcome by the way 😊
My neuro reclassified me as SPMS about 2 years ago. I am still on Gilenya and she says we'll stay with it unless I have a relapse. Then she's going to go with Lemtrada. I haven't had a relapse or new lesions in several years, but unfortunately, I've been on a slow decline. It's insidious. One day, I stop and realize that something i used to do is no longer possible and then I wonder when that actually happened. I'm still trying to do as much as I can, learn as much a s I can, and enjoy as much as I can.
Hello Chickadee59, it's Fancy1959 officially welcome you to this awesome chat room. You have found a safe place to call and ask questions, voice concerns, or simply speak to others who truly understand what you are going through. This chat room is full of some of the most comparing and compassionate people I have ever met. I also agree with Royjr and that you should probably voice your concern to your neurologist that you are unhappy with your progression and you would like to try other therapies to see if they can stop the progression. I too am going to be 59 years old in May and I also have secondary progressive MS like you. I was progressing at a rapid rate over the past year-and-a-half and I finally got approved about 6 weeks ago and started the new Ocrevus therapy that was approved in March. There have been a lot of good studies on this drug and people have been very positive about the lack of progression of their disabilities as well on this therapy.
You are the most important advocate for your health! If you feel something is wrong or unhappy it is up to you to stand up and ask for options and then research them and see what can be done about getting you on them. If your neurologist doesn't agree or simply thinks that you're doing okay even though you know you're progressing you could always go and find a second opinion from a different neurologist. That is exactly what I did about a year ago and I could not have been more pleased with my new neurologist. My old one told me I had an MS for so long and I was out of state where nothing could help me and I was simply done for. Well I said no to doctor death and quickly found a different neurologist like I said.
The point here being again is you are your best advocate so make sure you are comfortable with the therapy you are and you see if not noticeable Improvement at least a Slowdown in disability overtime. There should be some therapy and remember new therapies are coming out all the time that will help to stop your progression or at least slow it to a crawl. Take care and until we speak again and I want you to remember that together we are stronger!
I was very unhappy with old neuro seen with old insurance but thought that was just the way it was. It was when my insurance changed Jan 2018 and I got set up with new MS Clinic that my med was changed. That is why I was so excited about new drug. I was dx in 2008.
I had the same experience. It somehow softened the blow of a major change all the sudden, but still disheartening.
I moved and got a new neuro who would not treat me unless I switched from Tysabri to Ocrevis, because I DO have the JC Virus. I VERY reluctantly agreed to go along.
That meant no treatment of any kind for 3 months, then begin the Ocrevis.
During those three months my back muscles deteriorated to where I had a distinct hunchback.
While taking the Ocrevis, my hunchback became very pronounced. The hunch over has affected my leg muscles.
Not having a sudden palpable difference in my body left me in quite despair. It’s been 6 months and I can’t adjust. Maybe I’m just tired of getting knocked down over and over.
I’m at the point where I’ve personified MS and want to say “You got me. You win. I give up. I’m too tired of this.”
Sorry for the negativity.
Hello
Switching from Avonex to Plegridy
To inject or not to inject? That is the question!!!
GODFIDENCE!
