FULL DOSE OF OCREVUS

[bavery207]

On Wed. I had my first full dose of Ocrevus, with no real side effects. I took it easy on Thursday just in case, then of Fri. my husband had the day off so we went out and ran errands much of the day and I was fine.

[pihokken]

Good to know!

[Royjr]

Glad to hear that you’re doing good. I hope it stays that way.

[Iona60]

Good to hear this. I've had 2 half doses. Have you seen any improvements? Did it seem to wear off before the 6 months?

[bavery207 in reply to Iona60]

Iona60 I have PPMS and we are warned to not expect improvements, but rather a slowing of progression. With that said, I have not really felt much different. I do not know what this infusion will bring. I just can't sit around and not do something! I am hopeful I will continue to do at least what I am doing now.

[kdali]

Yahoo!!! 🎉

[amyb6429]

I have questions about financial assistance prograns because I have Medical Mutual thru Medicare. Private funding available at the moment? if you are aware? It any contact people I could talk to. I missed out on treatment due yo no funding from any source...I am in Ohio..Cincinnati are! TIA!

[Jesmcd2 CommunityAmbassador in reply to amyb6429]

Hi amyb6429 I don't think we have had the pleasure?😊 And you almost snuck by us.😄 I am sorry for the reason tho.

Here is some contact into for Ocrevus... Ocrevus

Genentech Access Solutions

Phone: (844) OCREVUS (844-627-3887)

Website: Genentech-Access.com

Also call mymsaa.org and see if they can help you at all.😊

800 532-7667 ext. 154

Please let us know how it goes ok?😊

Jes 🌠

[amyb6429 in reply to Jesmcd2]

Thanks!

[Yooper in reply to amyb6429]

Try the assistance fund(TAF) out of Orlando Florida. They do help pay with Ocrevus if they have funds available. They don't cover any medical expenses, but help cover drug cost. Wish you the best. God's peace and strength.

[amyb6429 in reply to Yooper]

Thanks!

[jimeka]

bavery207 so pleased that all went well, I hope it continues to halt the progression, we are still waiting for its approval in the uk , blessings Jimeka 🦋

[ssdw1958]

I have my full dose in April can I ask you how long it takes?

Thanks ssdw1958

[bavery207 in reply to ssdw1958]

ssdw1958 I was at the infusion center a little over 6 hours. There was about an hour at the beginning for paper work and pre-meds, then there was an hour at the end that you have to be observed for any reactions etc. So that makes the actual infusion time about 4 hours. Good luck to you in April!

[ssdw1958 in reply to bavery207]

Thanks I know I’m going to be there I just wanted to know for how long.

ssdw1958”

[Diva1976 in reply to ssdw1958]

I was told full dose will be even longer. So I'm assuming 8hrs.

[bavery207 in reply to Diva1976]

Diva1976 although the drip starts slowly, IF THINGS GO WELL, they increase the speed of the drips every 1/2 hour so for me it took only a little over 6 hrs. from walking in the door to walking out.

[Jesmcd2 CommunityAmbassador]

AWESOME ATTITUDE bavery207 I hope thing continue to go well for you!💕

J 🌠

[Hidden]

Hi. CONGRATULATIONS ❣

My MS Doctor has Not Even Utter the Word of the New Medicine Ocrevus to me. My body has Rejected All of The MS Medicines Available.

I've been on Here's The List

Beta Seron, Avonex,Rebif, I did go into a Study fro Tysabri (some of the Ingredients were not in it) I got Sick,Passed out Only to Wake to them Ready to Paddle me with getting my heart starting Thank God I woke up just in time to ask them what are they doing. I guess I coded&they needed to bring me back, But I woke Up in time before they had to Use the Electric Paddles. Next I went into the Real Tysabri Infusion but they were on Alert&the 1st Drop into my vein I felt Very Hot and I was going down they stopped the Medicine Immediately,check my Blood Pressure it was 30 over 41, it took an hour an 40 Minutes to come back to a Normal Reading. I have been on All the Pill Form Medicines and None Worked, Like I mentioned my Body is Rejecting All MS Medicines.The Dr. said my Antibodies are Fighting Each&Every Medicine. I have been Off MS Medicine for a good 7 Year's. My MS Dr. moved to a New Place I went to see him for a visit & To be Honest, it was like being in a Fast Food Place, I was there Only a Good 7 Minutes. I want to go to another MS Dr. I am just So Disappointed & Disgusted with The Lack of Professionalism. Please if You can Would You Answer this Question I have. Would you Change Dr's? I am not Happy at All with The Lack of Care, The Professionalism. It's like get a Person into See the Dr. and Your on your Way Out the Door in a Few Minutes! My Good Friend goes to a Different MS Dr. and she is On Ocrevus and she Tells me that it's Time to Change Dr's( I have been going to this Dr's Office for 26 Year's, some Dr's have Left, then it became that you Saw Only the Nurse Practitioner, then a New Dr. would come in Only to Move on to a Different Office. I want to Change Dr's Badly,But It's my husband that Says to me, Why would you change You have been Going there for 26 yr's. So Stupid Me Listens to him& Continue to go to This Dr. I am not doing good at all, I'm not on any MS Medicine only Pills for My Leg's&for Fatigue ect. I am able to walk short distances,then I need help. I definitely know my body as We all Do,but the Lack of Not being on a MS Medicine is Bringing me Down Faster than I want. I am Only 53 years old,so Question- Would you change Dr's? I would love to be Able to Run Errands, to be a little more full of life. I am in bed for the night @ 5:30-6:00pm That's Not Right at All. I was the Type that would go Shopping. Do all Different Tasks. But I truly believe that My Husband likes the Fact that-He is The One that I have to Rely on. I can't Stand It. I Want My Life Back, I Want To Not have to Rely on Him(for he thinks he knows All. Once he told me that I am taking to much pill's so he said I think you should take Yourself off of Baclofen,so I listened, but when the Dr. did find Out (Actually this Dr Left to another Place) he Told my Husband Don't You Ever Tell her To Stop Any of Her Medicine. I'm So Very Stupid to Ever Listen to him, "BUT HE KNOWS EVERYTHING!!

I'M SO SORRY, THAT I VENTED TO YOU ABOUT MY LIFE. I'M AM SO HAPPY FOR YOU & I HOPE&PRAY THAT YOU CONTINUE TO STAY HEALTHY

Chris Klaffka

[pihokken in reply to Hidden]

It definitely sounds like you should get a new MS doc. Are you anywhere near NYC? My doctor spent 3 hours at the first visit and spends more than an hour at my six months check up. And listens to you. And he does his own research and is not beholden to any drug companies. Good luck!

[bavery207 in reply to Hidden]

Hidden YIKES!!! You have really been through a lot! No wonder your Dr. hasn't mentioned meds to you. I have read that Ocrevus works differently, attacking B cells not T cells, but do not know if that would make any difference in your case. It might be worth asking about.

Here is my Dr. situation: I started seeing a neuro. for Essential Tremor. He was wonderful, explaining each med. I tried and being careful to let one clear out of my system before trying another. And when brain surgery became the next step he referred me to a wonderful neurosurgeon and continued to do a good job monitoring me.

It was in pre-testing for the surgery that they discovered my MS lesions. I have PPMS so at that point there wasn't much that could be done. However, my appts. were all focused on the tremor and he never mentioned the MS. I talked to him about this and we agreed that I would be referred to a near-by MS center. (I still see him for tremor monitoring.) The MS center had one neuro.,he had been there a few years but left after my first appt. He was replaced by a temporary, retired neuro., and now they have hired an MS specialist who I have only met once so far. I am not in an area where there are a lot of neuros. to choose from so we shall see how things go. I am not sure if I would seek out someone else or not.

[ssdw1958 in reply to Hidden]

I need to tell you this is your husband a neurologist and I know the answer it’s No don’t listen to him I mean he is your husband but he’s not your neurologist. If your doctor or any doctor puts you on medicine it’s for a reason take it. The doctor you’re with is your husbands GP you need to leave him. The doctor not your husband. I had a doctor that would not listen to me about my foot drop my pains in my belly which came out to be Ms hugs I finally left that doctor and found a neurologist and a new GP if you are having a hard time finding a neurologist I don’t have the number but someone here does or Google it, you need to call the MS Society they will give you information you need and want to know. Please whatever you do think about yourself take care of yourself.

You need and want to move around and get out and go. Help your self you can do it.

ssdw1958”

[4fishylady]

I agree with ssdw1958, find another doctor! We, ourselves have to use whatever is left of our brain, to make as many decisions as we can for ourselves! I realize husbands are very helpful, and in most cases do have our best interests in mind, but in some cases, they simply do not understand all the ramifications. They do not have the Neurological degrees necessary to make some of these decisions! My husband watches me very closely, and when he sees changes that he does not like, he makes it very clear to me what he has seen, but in the end, I make the decision with the doctor's advice, as to what to do about it. Please contact MSAA and get their help in finding a new Neurologist, whether or not the actually specialize in MS. Mine does not, but I respect his opinion over the MS specialist in our area, who diagnosed me with PPMS upon my first visit, and said I should stop taking Tecfidera. I know that I have had my same symptoms for 30 - 40 years, but was only diagnosed 3 years ago. I am still walking, talking, sewing, and doing most of the things I really want to do, even with the cognitive challenges and occasional dizziness. Fight for yourself.

[Fancy1959]

Bravery207, it's Fancy1959. Congrats for your body tolerating the drugs so quickly and easily. I too have had my first dose and I'm waiting my second dose in April. I too am awaiting my second dose in April. Hope to start seeing positive results after the next dose or the year-and-a-half dose

[bavery207 in reply to Fancy1959]

Fancy1959 best wishes to you!

[ssdw1958]

Thanks everyone that how long I thought.

[Yooper]

Bravery207: So glad to hear!! Heavy fatigue hit me about a week after my first full dose. But, it's getting better every day. Praying you keep getting better and stronger 🙏!

[bavery207 in reply to Yooper]

Yooper I had the fatigue with my first 1/2 dose. It lasted about 5 days. But for me the 2nd 1/2 dose and 1st full dose were no wheres near as tiring.

[greaterexp]

Hurrah!