Neuro appointment today

[Raingrrl]

Well...today is the neuro appointment where I'm going to give in and start the process to switch from Tysabri to Ocrevus. I've posted about this before because it seems like a Solomon's choice and I hate that that Ocrevus isn't a clearly better option. (I'm saying this because of the incidence of cancer during the trials, the low volume of patients in the trials, no one over 55 in the trials, and that it hasn't been out in the wild enough for anyone to say definitively what the PML risk is.) I'm JVC+ with a high index and have been on Tysabri for 5+ years so my risk of PML is in the higher category at least while on Tysabri. This has been weighing on me. The only viable option for me, if I want to stay on DMT, is Ocrevus.

I'm nervous about switching to be honest because of that one patient who switched from Tysabri to Ocrevus and got PML. It doesn't matter to me that they are blaming the PML on Tysabri...I'm freaked out because it happened at all!

[Hidden]

Have you tried the tecifidera? I know there's 4 cases of PML but it's a pill instead of shots. Feels safer to me. I tried rebif at first then after a year I spent another year feeling like I was dying because I had developed antibodies. Is the ocrevus an infusion, shot, or pill? Good luck I hope it goes well.

[agapepilgrim in reply to Hidden]

Hidden hiw old are you? My doc wants me on Tecfidera but us worried about my age-70 and no trials for that age group. I am really scared to start it.

[Hidden in reply to agapepilgrim]

I'm 39 I've been on teifidera since going on 4 years. I like that it's a pill they can start you on half dose 2-4 weeks 4 weeks make side effects less then move up to 240 twice a day. I know that when I feel to sick with other illness there's been a couple few days I've skipped but it's been good so far. Dr said I didn't need to skip when sick but I have. When I did rebif injections I was getting necrosis skin issues still see purple areas from rebif injections and once a weird swelling with edema. I just like the tecifidera pill way better, at first it can cause flushing like A niacin burn but way less than niacin which is a detoxifier found in food. Tecifidera has very minimal side effects and regular blood work a couple times a year to make sure your counts are ok. I was told that chances of PML are low unless your red and white cell counts drop to low. Mine are higher on tecifidera than they were on rebiff.

My MRI s are stable even though I have attacks or flares alot but feels better than when I did when I was poisoning myself with rebif

[Raingrrl in reply to agapepilgrim]

Hi agapepilgrim ...from what I can tell, the studies seem to cap the age range at 55. It's concerning to me that there aren't studies involving us older patients.

[Raingrrl in reply to Hidden]

Hi Hidden ...thanks for the reply. Tysabri is one of the most powerful of the DMT so it wouldn't make sense for me to switch to something less powerful. I was switcged to Tysabri when Copaxone stoppedcworkingbfir me. Gilyenya is an equivalent but I can't take it due to a heart issue. Ocrevus is supposed to be on par with Tysabri but with a better safety profile.

[greaterexp]

Raingrrl , I know I'm a little nervous about even my Copaxone, though it's an oldie. I can understand your feelings about switching to something pretty new. It is exciting to read on this site what people have posted about their experiences so far, however. You know you'll have hundreds of folks here cheering for you and praying for great results with no negative effects.

I know you'll keep us up to date on your experiences and progress.

[agapepilgrim in reply to greaterexp]

@greaterexp I had no problems with Capoxone, especially using the Autoinject. Didn't feel a thing! But after 6 months developed a very bad rash, and 3 specialists and culture, and biopsy, and allergy patch test, and consulting with Tera company, made the decision due to very low immune system and very sensitive skin allergies before, the Capoxone was cause of terrible body rash and blisters. But it was my age, the progression of MS already, and extremely sensitive skin. No other side effects the 6 months I was on it.

[Raingrrl in reply to greaterexp]

Thanks greaterexp . I've submitted the paperwork and now just wait for the approvals.

[Iona60]

Raingrrl I was very nervous about switching from Copaxone to Gilenya, but my daughter summed it up well and it made so much sense. "Mom, if you are on no DMT, or stay on Copaxone (which quit working after 10 years) your MS will progress. This is a fact. With Gilenya, there is only a chance that you will get one of the side affects." So, I will stay on the DMT that makes the most logical sense for me.

Praying that all will go well for you, and that you will have peace with your decision.

[Raingrrl in reply to Iona60]

Thanks Iona60 ...I'm not willing to be off of DMTS all together so Ocrevus is my best alternative to Tysabri. I just hope it proves to have less PML risk. I would have tried Gilyena but I can't take it.

[Iona60 in reply to Raingrrl]

Raingrrl It's interesting how neuros have such varying opinions on when people should switch off Tysabri. I know someone that is JC negative, has only been on Tysabri for 2 years, and has been convinced to switch to Ocrevus.

[Juleigh21]

Good luck Raingrrl !!! Keep us posted. You're in our thoughts and prayers!

[Raingrrl in reply to Juleigh21]

Thanks Juleigh21 !

[Yooper]

Raingirl: I pray this is the correct course for you. Stay strong and know others have you in their thoughts and prayers.

[Raingrrl in reply to Yooper]

Thanks Yooper ...my neuro is convinced and had several patients in the trial.

[Jesmcd2 CommunityAmbassador]

Raingrrl did they say how long before you get approved?

J 🌠

[Raingrrl in reply to Jesmcd2]

Jesmcd2 My neuro thought maybe a couple of weeks. He doesn't want the first Ocrevus infusion to be earlier than 10-12 weeks after my last Tysabri infusion. So, if approved, that puts it out to the end of Sept./beginning of Oct.