Hello gang I saw a post requesting updates and I haven't written an update in awhile so I decided to go ahead and get the ball rolling.
The number of our family members in our chat room now signed up and taking ocrevus recently rising almost weekly.
So let's compare notes and see how everyone is doing with this DMT.
I go for my one-year infusion or infusion number four the first Friday in December. It got pushed back to my Bell's palsy. With my first 3 infusions I have had no issues at all with the infusion process other than I hate IV Benadryl and it tend to knock me totally out. Sometimes for a day or two. Nor have I had any issues with having the infusion make me feel bad or tired or wiped out for the next couple days after I take it. I don't overdo it a day or two afterwards but I feel just fine and I'm not any more exhausred than normal . What I have noticed is a reduction in my spasticity.
The posrtive results II have noticed is that I have had a remarkable reduction in my spasticity. If I take a fall or get ill the specificity vores back to life but on days when I'm going along normally I hardly notice it at all. The second thing I have noticed is that I have had increased my walking speed on good days when I'm not tired. If I'm tired you can forget about the increase speed. And the most exciting news of all was this past April just seven months into taking Ocrsevus I had my first clean MRI in over 5 years. I had no new lesions in my brain and I have no active lesions in my brain. That was a first in several years! Yahoo!
I pray this DMT continues to keep up the good work and I'm excited about my one year anniversary. For anyone else who has recently started you need to understand that for many people this DMT can take two to three years to really show the best results. Having said that we all know that each and every individual and their MS is totally and uniquely different. So we have to expect the results to vary dramatically from Individual to individual but yet overall I have heard positive results about this DMT. I pray Ocrevus is the answer to my prayers and many others prayers. I will continue to pray that this DMT continues to show that it can be extremely effective in this battle we fight against the monster we call MS!
Now let's see how many people can get to respond to this post with their own personal experiences as they relate to the DMT we call Ocrevus!
Bamfam1442, it's Fancy. Have your neurologist contact the drug manufacturer directly. I get the ultra vez through the drug company and they offer a 100% copay assistance for those who cannot meet the absorbant cost of the drug. You should be able to bypass hopefully Medicaid or Medicare altogether. I then also get assistance for the infusion. Hang onto your hats but just getting into used by setting in the infusion center for 6 hours roughly isn't cheap either. The infusion cost a long or about $18,000 and we couldn't come up with that even twice a year without taking most of what my husband makes me year. So I got assistance from the Catholic Action Center because we have the infusion done at a Catholic Hospital in Lexington, Kentucky called St Joseph East. I wrote a post several months back about other possible nonprofit organizations that help with infusion cost for the average patient. To really jump the hurdle and get financial assistance you need both financial assistance from the drug itself and assistance for the infusion itself. If you have more questions give me a shout and I will look up those nonprofit organization again or find the post for you. We can do this together so do not give up on ocrevus. It is appearing to be very productive to have very good results for many many people. I hope this helps. Remember together we are stronger! Fancy.
I'm not on Ocrevus, however, on Rituxan the precursor to Ocrevus. I have had the same wonderful results as others taking Ocrevus and you are right about it taking 2-3 years before one can see the best results. Overall, Ocrevus is the new and best true wonder drug for ms. Glad to find you doing so well.
I’m only 3 months out from the initial doses. I did have a miserable time during and after the infusion because of the steroids. I noticed drastic improvements after a week or two, mostly being maintained but a definite reduction on tired days after 2 months and symptoms mostly limited to the new crap that came along with my last relapse. That’s when I began learning to do extended fasting to help me keep my good results, so beyond month 2, I can not say it’s solely Ocrevus doing all the good for me.
I have not had a follow up MRI to determine if O is working for me, but I imagine I might be getting my annual a bit earlier next year, if we move ahead on baby 2.
I have had my first full dose at the end of August. I did have an MRI shortly after that and all is good. I haven't had any new lesions since diagnosis in 2006, but I have been getting steadily worse. Not drastically, but I notice the decline. I have posted about my first full dose back in August.
Now, my observation is that my balance and gait are better. My thoughts are clear. I have heard that Ocrevus results get better and better, the longer that you're on it ~ 2 to 3 years.
Hi Hidden ! My next infusion is next week. I’m also waiting for approval to schedule my next MRI. So far I’m stabile. At least I think I am! 2 really bad falls in the last few months have muddied the waters a bit and I’m not sure if damage I feel is all from the falls. I’ll report back after I get the results from the MRI’s.
I’m also in the midst of getting a diagnosis related to my thyroid. I got told today that I need a biopsy. Yuck. But that makes me wonder if Tysabri and or Ocrevus have played a role in this. Both drugs are immune modulators so my immune system can’t put up a strong defense to anything any more.
I felt like super woman after the first 1/2 dose and super duper woman after the 2nd 1/2 dose (Sep 28). Significant improvements in balance, strength, energy, gait, overall well being. No changes in cog fog or fine motor function. Like @kdali I am not letting O do all the work and have been fully engaged in stress management thru meditation, pushing harder with exercise, and concentrating more on assuring a healthy diet.
Around month 2, I began to notice an occasional MS day sneaking in every 3rd or 4th day—more motor fatigue, balance stuff but still better than before.
Recently, a lot of family stress, travel and changes in my routine. Within moments, MS reminded me I wasn’t super woman.
I ran back home to my protective cocoon, terrified that I would lose the benefits I had gained and have a full blown relapse. I feel terribly guilty and wimpy that I cannot withstand the stressors. I even got in the line for passenger assistance to board the airplane (nice to not fight for overhead space for bag but looked normal and more guilt).
Back home I’m doing better again but I’m very protective of me and it feels so weak 😢
erash You have been through a lot of stress lately, not to mention that stress is rampant this time of year. So, take it easy and be good to yourself! No need to feel guilty if you need to retreat to a safe place every once and a while.
Hi 1Fancy 1959. I started O in late April had my second half in May. After my first 2 infusions I was completely worthless. After the first one I couldn't even walk. The second half of the first-round I could at least walk. Just had my first full dose the 20th of November. After starting O I noticed I was going downhill for the first 4 to 5 months then it just like a light switch being switched everything turned around. My walking has greatly improved. I'm not falling nearly as much as I used to. Which was several times a day. It down to. Ummm, when I'm not paying attention to what I'm doing. I can catch myself before I tumble, before, Not a chance. My thoughts are getting clearer. I believe more improvements are on the way.
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