I was on copaxone for 20 years. I switched to Ocravus and had my first infusion in Sept. I cancelled my second infusion march something. I had a home blood test a week ago
. I haven't call the pa yet for the results. I am totally discouraged and wished that I was still on copaxone. I feel like a lab rat. I don't like the way NY ms people are treating me. It is so depersonalized with a total lack of empathy. I feel like giving the whole thing up after the corona thing is resolved...month away from now...Can I have the infusion done at home which I feel is so dangerous for many reasons: if something goes wrong, I'm screwed ! Possible catching the virus from the nurse etc..Can somebody help me!
Copaxone became ineffective for me after a year and a half of injections. I switched to Ocrevus and for the first time in three years, I’ve been able to lose the cane since. I’ve had two half dose infusions and one full to date.
However, my neuro and I decided it was okay to put off the infusion for a month, to see where all this virus stuff goes. Whether we switch because a med is insufficient or whether we stop for a month or two, still places us at risk for an attack. Then again, DMTs only lower our risks anyway. It’s a tough decision that needs to be discussed with the clinicians involved in our care.
I believe Copaxone may be less risky in compromising the immune system than O. Your bloodwork may help your neuro and you make a more informed decision. I’ll try to find the link I posted to support that if I can find it. Either way our immune system is compromised. Therefore we shelter in place as much as possible during this crisis. Hope this helps. Sending peace your way🙏🏻🕊
I'm in the same situation. I've only been on Ocrevus - past 2 years and only 2 rounds of it. My injection was Aug 2019 and when my neuro saw the results of my blood test in early March, he was clear cut: no way for you to get Ocrevus right now. B-cell are still at 0 (yeh!), but T-cells and everything else in my immune system is off.
The good news is that I've doing great, no MS activity, and no infection.
I think he will look at putting me under something different if my immune system does not rebound. Next blood test is May 2020.
don't make yourself upset over something you don't even know about yet ....i have been on Ocrevus since 2007 and i too have gotten better in lots of ways so i don't think you have anything to worry about but again i am not the doctor but i don't feel it is smart to stress about it ...stay safe and enjoy a movie or something to relax for stress is hard on the body anyway especially with this monster they call MS ...i really enjoy being on Orevus but that is me ...other drugs didn't help me like this has ...good luck but i still say relax till you here differently from the nero ...they know what to do ...an MS specialist ...love and happiness...we are so much stronger than the MS monster....
Good morning. I was on ocrevus for over 2 years. It first doctor that got me on the medicine told me that the infusions worked and lasted a bit longer than the 6 months that you usually think it would. He said if something came up seven or eight months with fine to do the infusion. Check with your neurologist and see what they think. I would probably hold off taking the infusion if you put for a month or two to see what the pendemic is going to do and then take my infusion. Poop once again chest with your current neurologist I am not a doctor and filled with what your neurologist says. Don't give up on the overest too soon because it supposed to be one of the best drugs we have right now to keep disability in check. Take care and be safe and stay home if you can. Remember we are never alone we are alone together! Fancy.
Thanks for answering...just waiting for the pa' s assistant answer to my phone call. Wish me luck! 1952 is my birth date. We have ms in common. Mine is spms, whatever that means! Just trouble. MY disability is physical only as well. declining progressively for 20 years or so ever so relentlessly slowly but surely as the sun rises everyday! So far! I have high cholesterol and follow a strict diet without gluten, fat and whatever ;oh yea! no wheat, no dairy as little sugar as possible. I get french pastry once a year ,french fries and regular bread on my birthday, new year. I learned to love brown rice bread. Hope to hear from you soon. I read ur bio i like to learn more if u so wishes.
We do have much in common is I will be 61 in May. The abbreviation of SPMS stand for what days you are currently in with your MS. Those of us who have had it for a long time like me and you has gone through the relapsing-remitting and this face and slid down the hill into the secondary progressive MS. Now you knjow what SPMS stands for. It is our wish at this point in our disease to stop our disability from increasing at all. The ocrevus was approved about 4 years ago and is considered a very strong DMT in the Avenue of stopping disability progression. You need to stay on it for 1 and 1/2 to 2 and 1/2 years to really see what the EMT is going to do for you. At my two year mark I was not happy with my Ms and I was having a hard time with it so they put me on the brand new drug called Mayzent. It's been approved and I have the starter dose in the first month supply in the fridge but I'm waiting to the pandemic lights down to start the new DMT. Hopefully it will only be here three or four months away before I can start it.
Until we speak again please keep safe by staying isolated and at home. Remember we are never truly alone we are alone in this boat together! Fancy.
I feel i am in the same sinking boat. I don't know if I should stay with ocrevus. I have lumps in my throats and I was supposed to have an mri. mammogram and...an ocrevus infusion that was cancelled due to ny city covid-19 related state of emergency. I don't know the future for what my medication/ms treatment should or will be?????? OMG!
I feel your frustration with this MS medication change. To answer your question about home infusion of ocrevus the answer is no. The ocrevus is Don under a very strict regime. Back pain prior to the infusion starting we are given a batch of Medicine this medicine includes steroids and prior to the starting of the ocrevus infusion your vitals are monitored every 10 minutes to make sure you are good to go for the infusion. Once the infusion process is done and we are monitored for about an hour to make sure there are no reactions to the Copaxone. I have had 5 infusions and it went without a hitch and I feel great being on I was on Copaxone after that avonex and after that tysabri. I can say for myself this is the best medicine I have ever been on. Good luck to you with everything you are going through
Thanks for your detailed info. I had a hunch that there was no home infusion due to what u wrote in details. Called the dr office today and I am waiting for what they say regarding my test results and the ny city state of emergency. When was ur last, when is ur next infusion. R u affected by the covid-situation ?
OK except I don't know what the future is regarding my next or not next infusion, Uncertain times: covid-19 & ny city state of emergency..until June may be...or more..
Take a deep breath and know that everything will work out okay. Keep up with your neurologist and let them know your degree of frustration and anxiety. Both those feelings are very normal for most of us with MS right now due to the Coronavirus pandemic.
I can honestly say I never expected us to be swept with a pandemic this bad with our modern medicine. My husband kept comparing this virus to the flu and I kept telling him it was much much worse. Now that the death toll starting to rise around the globe he suddenly is starting to see what I was talking about.
Until we speak again please take care and remember together we are stronger! And that even if we are alone we are never truly alone we are alone together! Fancy.
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