Avonex vs OCREVUS

[Horse714]

My neurologist says no but does anyone know if you can go back to Avonex after the doctor put you on Ocrevus and you don’t feel comfortable with it???

[Hidden]

I do know they do want you to be on ocrevus for a while just to see if it does work. But I would ask your doctor

[DM0329]

Boy can I relate to your post! I've been self-injecting Avonex for 22 years (just had my 26-year MS Dx Anniversary). My long-time neurologist retired, and my new neuro suggests switching to Ocrevus as it's a superior drug (he says stops MS in it's tracks).

But, Avonex has been my long-time companion IMHO. Despite being a huge needle weenie, I know that Avonex has slowed my progression down substantially and I've had minimal flares (only one bout of ON after my first six years on A way back in 2003) and my MRI's have always been stable. SPMS transition? Who knows?

That's why I'm afraid to switch Ocrevus. If it's not broke don't fix it, but should I need my new neuro's advice? Keep us posted as you talk more with your neuro and fellow MSers!

[Horse714 in reply to DM0329]

When I went and saw my neurologist after not going for a couple of years I told her I stopped my Avonex for several months and she started telling me all about Ocrevus and you only need 2 infusions a year, had me sign some paperwork and when I got home I started reading about all the horrible side effects and I called and told the nurse that helps her I wanted to go back to my Avonex and he/the nurse said I can never go back. I’m flipping out because I read you can get an infection and it could kill you!!! Idk what to do.

[IFwczs in reply to DM0329]

I am on Ocrevus and am very happy because it's the only MS DMT that slows down disability progression. However, saying that Ocrevus "stops MS in its tracks" is wrong. I personally overheard someone in the infusion room who said she had a relapse while on Ocrevus. Nor does Ocrevus make any such promise.

[Horse714 in reply to DM0329]

I would continue with Avonex I really don’t like what Ocrevus has done and it has serious consequences like infections, cancers, weight gain, big time hair loss. I’m going to tell my neurologist I don’t want to take it again I can’t believe how much hair I’ve lost and weight gain 10+ lbs. it’s safety’s issues are my biggest concern. I was on Avonex for over 25 years and didn’t have to worry about issues like I do with Ocrevus.

[Lauriemurray]

You may want to switch neurologists? I have had my regime switched a few times. Due to disease progression. I am currently on Ocrevus but if there are any new issues; i will switch again. It is recommended that you try a medication for 6 months to a year and than check mris before you jump ship. It can take months to see if a new med is a good or bad fit for you.

[ahrogers]

It sounds like you haven't started Ocrevus so I am not sure why they say you can't go back on Avenox. I think serious infections are pretty rare with Ocrevus. I have been on it 3 years with no problems. It may be time to get a second opinion preferably by a MS specialist.

Good luck!

[Horse714 in reply to ahrogers]

I’ve had my first 2 infusions so far.

[ahrogers in reply to Horse714]

I would stay on it then. It has worked best for me so far. I was on Gilenya and Rebif in past without much help slowing it down but definitely better with Ocrevus. It seems each DMT has potential side effects. Being JCV positive limited my options.

[Horse714 in reply to ahrogers]

thank you for your input, it has definitely helped me with the pain in my legs thus far. again thank you!!

[ahrogers]

That is great news!

When I relapsed on Gilenya I was going to switch to Lemtrada (it had just been approved and sounded good- except for the side effects) but my insurance denied it because it was approved after failing 2 prior therapies and I had only been on Gilenya. I ended up on Rebif for a year before relapsing and was eligible for the Ocrevus trial. Looking back I am glad I didn't get approved for Lemtrada. It is far scarier than Ocrevus and I didn't realize it was a 5 day infusion that made you sick. Luckily Ocrevus doesn't really cause me side effects other than my glands in my neck are tender for about a week after but only tender to touch, not painful otherwise.

Hopefully you will be one of the lucky ones who gets improvement in your symptoms rather than just slowing down the disease course!!

[Horse714 in reply to ahrogers]

I was on Avonex for a really long time like 15+ years and I quit taking it for several months thinking my m.s. wasn’t so bad , boy I was wrong had a exasperation and went and saw my neurologist she did an mri but the lesions were the same as they have always been no new or hot lesions, I wanted to go back to Avonex, but she as I previously had said put me on Ocrevus it has really made a change in my neuropathy as I said but I’m terrified of my concern of getting cancer and infections, and I lost a lot of hair which isn’t supposed to be a side effect of OCREVUS. I see my neurologist in July and see what happens by then. My daughter is a pharmacist in Colorado and has told me the hair loss is due to the steroids.

[Horse714 in reply to Horse714]

P.S. have you noticed any hair thinning??? Again I’m happy to have met you your easing my mind. thank you much!!!

[ahrogers in reply to Horse714]

I haven't really noticed much hair thinning, maybe a little. The breast cancer risk numbers are very odd as the non Ocrevus group had none which isn't the normal distribution so it makes me question the risk for Ocrevus. With so many more people getting Ocrevus we will get better data. I get my yearly mammogram and occasionally do a self breast exam. At least breast cancer can be detected early and cured 🙂

I am glad I can ease your mind a bit!