Curious about starting Ocrevus.

[Gjs333]

I was attracted to this site when someone had s Q&A with their MD about starting Ocrevus. I will be having this discussion in September and wondered about your experience. Gee I wish I had recorded a name!

[WAshingtongirl]

Welcome Gjs333 ! I'm unable to help you with your Ocrevus question, but we do have a few here who can. You came to the right place!

We hope to get to know you better. 💕

[Jesmcd2 CommunityAmbassador]

Hi Gjs333 I'm not on ocrevus either, but I think the person was Raingrrl ? Who had all the questions for her Neuro.😊 if not, someone can help!

Jes 🌠

[Hidden]

My Neuro thinks it's safer than Tysabri if you have tested positive for the JCV virus. It's less risk for PML. My Dr prescribed Ocrevus for me but I'm opting out of meds all together . Good Luck

[Gjs333 in reply to Hidden]

Thanks .

[Hidden in reply to Gjs333]

You're welcome

[deradakov in reply to Hidden]

That decision is strictly up to you, but remember by what I read with newly diagnosed patients this OCREVUS may stop the MS from causing any problems. If this doesn't work like I said I am looking into the stem cell/chemo but the Canadian study found the MS has a harder time attacking hip stem cells, and for the people who lived thru the chemo portion their MS has been gone for over 10 years. I personally didn't want to go on MS drugs either, but now I just hope that by trying out all these different drugs they will figure out a cure. It is probably to late for me and when I pass on I want to leave my body to science so they can figure out why I haven't let the MS made me disabled even though all my brain and spine have been damaged. It isn't easy but every day I wake up and put my feet on the floor and stand up it is a good day no matter how painful it is for me. I will always keep a positive attitude and it is the one thing I refuse to let this damn disease take from me. All drugs have a side effect but hopefully these drugs will keep you mobile. The best non medication thing I did was accupuncture and for pain using a Calmare machine. The guy who did both left my town and so did the other Calmare machine, and the Calmare will only work on neuropathy pain. Don't be too brave and not accept medication and help when you need it, and keep an open mind on trying these non medicine treatments to help with your pain. I plan on finding someone who can do the Calmare or accupuncture again because my pain even though I started OCREVUS is getting out of control.

I just need to go fishing or go out and take pictures since both relax me. I am fortunate to have a wonderful wife who loves doing the things I love so we enjoy them together.

[deradakov]

I was told by OCREVUS that when I started the chemo 35 people in the New York area had started and I was the first west of that. It is supposed to be the wonder drug, and because I have been on every MS drug in my 32 years of having MS it is my last option to remain mobile. I started with a half dose every two weeks and now I have to wait until November. Because I have been told that I should not be able to walk with all the damage the MS has done to my brain and spine I really disregard any of that talk about what I shouldn't be able to do. Because I have so much damage when I have an exaserbation it usually hits parts of my brain and spine that is already damaged and the radiologist cannot see the new damage but my brain volume has decreased. The infusion to get OCREVUS takes a long time, and I was a little nauseated after the infusion but medication helped. My wife drove us back to Wyoming and the pain woke me up in that it felt like my brain was being pressured up into small crevasses in my skull. I actually got brochure from OCREVUS and I called then asking if there was more to expect then what I read, and they told me because it was on the FDA "fast track" they really didn't have time to test the chemo and asked me if I would send them a daily report on what I ate, drank and how I felt. I told them about the nausea and they told me to ask the neurologist to give me the nausea pills they sent me home with before the second Infusion. That worked because I did not get nauseated, but I could not lay flat in bed that night just like with the first Infusion. Because I have so much damage OCREVUS nor my doctor know if it will actually work for me, but they say with newly diagnosed patients it may stop the MS from causing any damage. I have always made sure to know about any MS drug I put in my body, but I could not find out anything about OCREVUS other then it is chemo drug and OCREVUS could not tell me how low my immune system would go but they said they hope it stays in my body until the next Infusion. I can tell the chemo is doing something​ to me, and after the first I felt like it gave me back a little coordination. Four weeks after my last Infusion i lost a little control of my right shoulder and arm which I thought was an exaserbation, but the next day after working out the numbness went away and it was back to normal. In 2000 after a surgery I walked out of the hospital, but within a month I was walking from chair to chair and I refused to get a wheel chair. I played rugby in college and I when the MS orginally hit I couldn't run anymore. I work out daily, but in 2000 I lost all my muscle tone from having ulcerative colitis. I had my Colin removed which I still hate, but I can eat whatever I want and I did not get cancer in my Colin like my grandfather had. Copaxon was a fantastic drug for me, but it also put me in the emergency room four times with antifolatic shock. Every drug has some kind of side effect, but so far with OCREVUS I have not noticed any amazing results like with steriods. I hope and pray the OCREVUS corrects the damage the MS has caused, and my oldest son who came down with MS two years ago may or may not be put on OCREVUS. Two weeks after the infusion I had to isolate myself from anyone who is sick or may be sick, and now when I go out just to be careful I wear a mask in public. If OCREVUS helps me out all these things I need to do to make sure I don't get sick will be worth it, but like my son with two young girls who always seem to have a runny nose i really don't know how he can take the chemo. In the paperwork it says a simple cold would out me in the hospital so I have been extra careful not to be around anyone who is sick at all. I finally was able to see my grand daughters after a month and it felt like a year. If this chemo is as good as they think it is then I will be happy, and if not I will need to find another treatment since I am out of choices.

[WAshingtongirl in reply to deradakov]

deradakov , you've really had a hard time with MS...and now your son has been diagnosed with it. I'm so sorry.

Thank you for sharing your thoughts on Ocrevus. I know we all are different in how MS and medications affect us. I hope as time goes on, you find the Ocrevus helping you.

Grandchildren are precious, aren't they? But they also seem to catch every bug that's going around. Like you, I've had to distance myself from my grandchildren when they are sick. That's hard to do.

We welcome you to what I think is a great place to share, vent, and encourage others who have or care for someone with MS. 💕

[deradakov in reply to WAshingtongirl]

The worse thing I ever had with MS meds was with Tysabri. It actually made it so I could walk without a cane, but unfortunately after my neurologist tested.some of his patients he has 25 out of 375 people tested that showed signs of coming down with PML. His exact words were " I cannot believe how well you are doing but unfortunately you are one of the 25. If you have PML there is no cure and you will be dead within year". The JC Virus test at that time was a combination of a urine sample and blood tests. He said 6 weeks but it actually took 7 weeks and in that time i did research on finding nay type of cure for PML. There isn't, but I stopped taking Tysabri for a while, but because I had a colostomy the neurologist all felt an IV was the only medicine I could take because.of my problems with the ABC drugs. With every infusion Biogen paid for a JC Virus test until I got sick and called in like I was supposed too. The lady who answered the call spoke to me for over an hour and turned off the recording and told me you seem very competent and I will tell you Biogen knows you are going to catch PML and I recommend you stop the drug now before you catch it. I went on Tecfederia and after blood test my lymphocyte level was down to 526 which is also a sign the PML is near. I now have to check my lymphocyte levels and try to increase then but the bad thing is to do that I am also increasing my cholesterol level which.is currently at 280. I cannot take cholesterol meds because they cause pains in my legs so I am basically a medical wonder to see what will hit me first. I just try to enjoy every day like it is my last, but the bad thing was my neurologist said one day I may go fo sleep being able to walk and when I wake up I may be completely disabled since my brain and spine have been pretty much distroyed. Every morning I wake up and put my feet on the floor and stand up it's a good day.

[Gjs333 in reply to deradakov]

Thank you for sharing your experience. KEEP STANDING UP, And enjoying every day to the max!

[postmanjim]

Thanks deradakov for taking us through your in-depth journey with the newest MS drug Ocrevus. You really did your homework. Wishing you continued success and keep us posted.

[Fancy1959]

Gjs333, it's Fancy1959 welcome you to this awesome chat room and our extended family. You have found the safe place to come and ask questions and voice concerns and talk to some of the kindest and most compassionate people I have ever met. If you look the right of a column that you're supposed to Sears you will see a column that says related post. Under the related post column the second post written by Raingrrl talks about her conversation with her neurologist about her starting Ocrevus. I too am awaiting the call from my neurologist to start the new therapy. I hope to be on it sometime this summer or fall. I have secondary progressive MS and I need to stop my disability progression. I to pray that this new therapy can not only stop my progression but help to heal some of the damage this monster has already caused. Remember to give us your birthday so we can join you in the birthday club I started. That way we can send you birthday wishes on your special day like any family would do. Until we speak again please take care. And remember together we are stronger.

[Gjs333 in reply to Fancy1959]

Thanks Fancy1959 for your response. I was diagnosed with PPMS in 2995. I took Betaseron for one year then three years of Copaxone. Neither helped,as predicted, so I stopped (with Dr's direction). It's been a slow decline for the last eight years but now I'm feeling like the risk/ benefit ratio is something I should weigh again. At this time, I'm gathering information for that September consult.

I've had several skin cancers and am not sure how that will steer decisions.

Thanks for the greeting and input.

Gjs333

[Kellyonpause]

I too am on Ocrevus, just took my second infusion about a month ago. So far it has worked for me and has been the only drug that has worked at all on my Short but turbulent MS journey. I have only been diagnosed for 3.5 years and in that time I have previously failed four other MS medicines in spectacular fashion. My limited remaining choices were Ocrevus, Aubagio, or Lemtrada. We went with the unknown (still in trials) at that time Ocrevus. Over the last 7-8 months on the drug I have dealt with side effects that I did not know we're even side effects because they would not tell me anything about what they might be and just wanted me to monitor up until this latest infusion which was after approval. The main side effect i have had is a nasty cough that does NOT go away along with some insomnia that got worse after this drug. But seriously, the cough... It is a very wet cough with loads of phlegm to cough up and just is always there. I have had clear Chest X-rays and pulmonary function testing twice during treatment (went on my own to get these) and all other docs have said upper respiratory infection with lower respiratory ataxia. So when the published side effects came out on the drug I was not shocked to see that be a number one symptom! All in all, for a clear MRI for the very first time ever, I will take a constant cough and a loss of sleep for a while. When the doctor said no new lesions, I was in tears, of happiness!

[WAshingtongirl in reply to Kellyonpause]

Welcome, Kellyonpause ! We welcome you to the MSAA forum, what I personally feel is the best place to be when you need to ask questions, find answers, support, or just to vent. Everyone here seems to 'get it.'

Your experience with Ocrevus will be of great interest to many here. Thank you for sharing the good and your experience with the not-so-good side effects. I'm sure many will have more questions for you.

Again, welcome! And we hope to get to know you better. 💕

[Gjs333 in reply to Kellyonpause]

Thanks for sharing your experience. Just taking notes for now.

[deradakov in reply to Kellyonpause]

I really feel for you. The one thing I didn't mention in my post was in try to exercise as much as I can every day. My wife cane home with the flu she caught from out grand daughters and on the OCREVUS it hit me hard. It was the only days I couldn't exercise and I am amazed how much I lost in those 7 days. I then got an ear infection which antibiotics cleared, but I have to basically start my workout again from scratch. The more I exercise and stretch the better my body feels which makes me personally happier mentally and physically. Please do everything you can to stop the MS bear from taking things away from you, and even when I couldn't walk I would physically make my legs move the way I wanted then too. I used to be a lot better swimmer then I am these days but I can use a kick board and just doing a couple laps really works me out. Keep pushing yourself as much as you can and don't give up no matter how much it hurts. Good luck and I am sure things will work out in your favor as long as you keep moving as much as possible. The last 32 years I have been through it all and have gone through every stage of disability and the doctors have no idea of how or why I am still able to walk.

[RobertCalifornia]

I started my first infusion June 5th. Took total of 4-1/2 hours. 50 mg of Benadryl before I stated. Prednisone in the IV along with Ocrevus. When done I received another 25 mg Benadryl and 625 mg of Tylenol. I was tired for two days. That was my only side affect. I have the second infusion on Monday. My Doctor told me to give the medicine two years to decide if it works. She is an MS specialist and was the first in California todo an infusion. It is the only drug for me because I have PPMS.

[Gjs333 in reply to RobertCalifornia]

I too have PPMS. Just looking for that ray of hope.

[Gjs333]

Hi friends. I know that there are inclusion and exclusion guide lines in trials but now in real time, might treatment be denied because I have had six skin cancers on my face. I know that cancer is on the possible side effects list for Ocrevus.

[stephanie_1]

I have done 2 treatments now of Ocrevus and I have noticed changes and would highly suggest trying it. My flare ups and decreased if not gone away so far and that happened after the first treatment and I usually have 2-3 flares a year and I was on Lemtrada. The only thing I have noticed is that around the 4th or 5th month I start to feel like the medication has run out and I need a pick me up. I am hoping after I build up more in my system with more infusions that will hopefully get better.

Steph