Hello All!! First I would like to say I am so thankful for this forum and all of you, ppl who don’t misconstrue the smile on my face and yet know what I am going through without daily explanations and judgements. I have been off meds for 3 years because I spent more time recovering from the side effects of weekly injected meds than the repercussions of MS. Does anyone else go through physical limitations, pains, and symptoms on the daily that you don’t know is attributed to MS or not!?! There is a new medication that you only have to take twice a year Okravus (I think that’s how you spell it) I seen it advertised on TV. I just want to know your thoughts about it. I have been advised to get back on meds to prevent acceleration of disease. I want to know if this or any medication will work without “the 4 out of 7 day recovery, then repeat cycle” Please share your thoughts. I just want to feel as normal as I try to appear.
New Meds Pleeeeeze!: Hello All!! First I... - My MSAA Community
New Meds Pleeeeeze!
I am not on Ocrevus but many on here are. Some have good results but it is not a miracle cure. It is said to slow down the progression of the ms. There are many testimonies on here to how well it is working. Let us know how you get on, Blessings Jimeka 😊
I'm on O and it's something I wish I should have done in the beginning. I have seen improvement
I started ocrevus this past summer. So far so good. If your doc thinks you belong on a med, and you’re not, that sounds risky to me! I’m not noticing a lot of side effects on ocrevus.
You may use the search feature and type in “Ocrevus” to see the many posts here about it.
I read that some people feel some side effects for a few hours or days following the infusion, but they are tolerable. Given the much improved prognosis that can come from Ocrevus, it would certainly seem wise to at least talk about it with your doctor.
Let us know what you decide, won’t you?
Hi Jozzi welcome to the club! I have my next full Ocrevus infusion on Friday! Alot of ppl sleep through it.
There are Alot of new DMTs out there now! I'm sorry you were on one that was making you so ill.
Make sure you write down all your questions for your neuro about the O.
And ask us anything! 🤗💕🌠
weekly injections sounds like interferon beta 1a, perhaps talk with your Neoligist and get a stronger Disease Modifying Therapy. I took 1a and had horrible reactions took 1b for years I just hate needles. Try that it mi8ght help, no harm in asking. Ask about Ocrevus, less needles more effective, but do something.
yes if you can get back on some meds ...yes the shots were so bad ...i hated them ..tried two and both were the pits but now i am on Ocrevus ...and i am so much happier being on it and i have done so much better with my walking dealing with heat and fatigue ...so good luck and i do believe we all should be on some meds...
I’ve been on Ocrevus since Oct 2017. I wish it was available many years sooner. I have tolerated very well & have seen minor improvements. Go for it!
I am on Ocrevus and I have had good luck,after second day i am goodI sleep the 1st day,then the steroids they give you during treatment gives me a bunch of energy.Every new treatment is scary but I haven't heard of any bad reports.best to you
So, Ocrevus is a steroid? Is there unwanted hair in unwanted places (I’m a woman)? Is there weight gain? Or any other side effects I should ramp up for?
no,it us not a steroid but they give you steroids before they give you meds and your benedryl.they also make you take a tylenol.it is to head off any side effects.don't be nervous,,it's all good
Lemtrada has two series of daily infusions (5 times then three times a year later) and you're done. I didn't have any recovery issues but there could be some.
According to my neurologist, Ocrevus is the only MS DMT to slow down disability progression. No side effects. Lemtrada is the last resort when nothing else works.
Jozzi, I'm on O, have been for close to six months without side effects. That being said, an acquaintance of ours went without treatment for five years. Five yrs ago she had ppms with minimal issues. Five years later, she is bed ridden at the age of 45. Please try the Ocrevus if your Neurologist agrees.
I am on Ocrevus as well. My first and second infusions were in October of this year. And so far, I haven't had any side effects. If your neuro suggest you try it, it may help. Don't know until you try. 👍
I am about to have my 4th infusion of Ocrevus. I feel the most "normal" I have ever felt since having MS. I haven't had any side effects other than that steroid "buzz" on the first day. Good luck in making your decision.
I'm on tsarbi, it's an infusion given every 28 days, I feel so much better sence starting this, I agree with everyone else, please get on something
Hi!
I just had my second full infusion.
The day after I took a shower and brought the cleaner in with me and cleaned the shower! Yes I felt great. Now two weeks later, I’m still having pain.
My troublesome lesion in my spine which causes I guess a nerve to wrap around my left side, is still hurting 24/7. Some times I’ll get a attack of worse pain.
I’m told I am at the top of my meds because of my heart failure and disease.
I also have diabetes.
I’m not feeling a pain difference but my mris come back with no new activity.
So try it. You might like it!!
Have a good day!
Welcome Jozzi to this forum. Yes, I am on Ocrevus, since February 2018, and have done several posts about my experiences. You can find them by doing a search on HealthUnlocked by entering 'Ocrevus' in the top right hand box on the screen. There are many members in this forum that have also posted of their experiences.
To answer a few of your questions, no Ocrevus does not contain steroids, but steroids are administered at the infusion to address possible infusion reactions.
There is a lot of information available for this medication to determine if it is the right one for you. Let your healthcare professional know that you're interested in Ocrevus. For me, my neurologist was my best source of information. Again, welcome to this forum, and I look forward to hearing more from you! 
Hi Jozzi,sorry to hear you're not feeling good and no meds.I have been on O for a couple of months and feeling better than when I was on Rebif.Good luck and God Bless.
I am on Ocrevus. I have been for a year now and it has done wonders for me, most of my MS symptoms are gone. It isn't a steroid but you get a dose of steroids with it to stop or lessen any possible side effects that may occur. I don't get any side effects at all, some people do and it varies as to what and the degree. I took Rebif injections when first diagnosed and they made me sick and I had bad site reactions. Then I went on Copaxone and stayed on it for several years. It worked the best between Rebif and the pill, Techfedera. I got to where my muscle tissue was deteriorating and I was just tired of injections which is why I went to Ocrevus. I wish they would have had it at the beginning of my diagnosis in 2005. Good luck to you!
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