ovrevus and corona or the ny state of emergency

I cancelled my 2nd Ocrevus infusion due today. She told me that i could postpone it for a month but she need some blood work to see how my immune system is doing. However, we have a state of emergency in NY, I am a high risk person: 68, senior, ms and on an immune system drug, I am not supposed to go out. I feel that my ns dr and her pa are not supportive. They barely talked (nurses, assistant s,dr ,pa, ect....to you. I don't feel supported or listen to. Can somebody help me? I was on copaxone and switch, after 20 years. OMG what do I do now?

[kdali]

Yes, let them know to send someone out to either give the infusion or draw your blood., whatever you decide to do.

[rjoneslaw in reply to kdali]

I agree with kdali 100% and if they want blood work then they should send someone out to do it.

Also demand that they hear what you have to say and make your concerns heard don’t let them walk all over you. Some places feel once you reach a certain age they feel that they can treat you a certain way

[Hidden in reply to kdali]

Can they do the Ocravus infusion at home? Got mu blood work done at hoe. Thanks for your much needed advice.

[kdali in reply to Hidden]

That depends on your insurance. Mine requires all of them to be done at home now, except the first one, because it’s cheaper for them.

If so, it will go through the home health agency associated with your insurance.

[Hidden in reply to kdali]

Thanks a lot kdali. You help me a lot ,I know what to ask for because the ms health care people at NY Presbyterian hospital don't know anything, ok, close to anything!

[kdali in reply to Hidden]

You’re welcome!! I hear you, it’s a giant hassle to get what you need sometimes. Please let us know what happens with you!!

[Hidden in reply to kdali]

thanks

[anaishunter]

Do the blood test. Then you'll know where you stand and whether you're B cells are bouncing back, whether it's ok to wait another month and more.

My neuro always order a blood test before prescribing my next Ocrevus infusion. I would not do an Ocrevus infusion without a blood test first - period.

Our immune system is unique to each one of us. Here's my story:

Ocrevus destroys B-cells. In my case it does a lot more and destroys a lot of the Tcells and bunch of other stuff in my immune system. I'm waiting for my third Ocrevus infusion. I'm at 2nd one + 8 months. I did a blood test 2 weeks ago and my immune system is so down that my neuro said to wait and do another blood test in May. Bcells are not at 0 but still really low, so I feel protected from MS.

Last time, before the first two 1/2 round and the 2nd round (1st full), 13 months went by. and I'm ok if my next round does not happen until this summer. I was quite stressed last time around because I was so stuck on having Ocrevis every 6 months. My stress went up and of course, MS showed its head - not too bad.

But frankly, if Ocrevus is every 12months for me, I should be happy about it. This time around, I'm at peace with it. Especially given the circumstances with a nasty global virus going around.

I'm lucky in that I have not had any flu, infection or anything since on Ocrevus 2 years ago.

Be safe, get your blood test, get information. And know that we are not all on the same clock wrt Ocrevus.

[Hidden in reply to anaishunter]

Thank you for answering with detailed informative details. Got my blood test done, at home mind you. Thanks for ur advice. I have to wait for the results. It seems that they have a lot of ways to determine one infusion to the next one: 6 months, a year etc...To be continued. thank for explaining, I understand it better now. But I am still very anxious.

[NiCap in reply to anaishunter]

My question has been that healthy T cells protect you from coronavirus and also B cells contain memory of previous viruses you’ve had and then developed immunity to. What happens to all that previously developed immunity stored in B cell memory while we deplete our B cells. And not to get on a tangent but I’m doing that, wtf is MS?? Is it an overactive or under active immune system because I’ve read conflicting information on that! Furthermore, holy ADD, I read in a study done in 93 or 97 showed close to zero co-occurrences of AIDS and MS. Interesting. I don’t understand mechanisms of chemistry but it’s interesting the drug prescribed for AIDS is a last line treatment that CURES MS as of this far in research. That doesn’t mean it doesn’t also guarantee other lifelong debilitating side effects.

[jimeka]

kdali and anaishunter have given you good advice. Get your bloods done and see where you stand. Let us know how you get on. Blessings Jimeka 🤗

[Hidden in reply to jimeka]

Thanks for answering me. Much appreciated! Got my blood test done at hoe. To be continued. Don't know what my future Ocrevus infusion status will bring.

[Kenu]

My neurologist called second time yesterday to see if I am coming in tomorrow? She advised lots of people canceling especially if it’s just a check up. I went to pain specialist yesterday and had my pain pump refill and they were meeting yo at the door outside and taking info, blood pressure, and temperature 🤒. Having you wait in your car and then coming and get you when ready. I think it was a great idea so no sitting in waiting room. Everything was on time also. I go to hospital this morning for feeding tube replacement so we will see how that goes? 👍🙏😉 Ken 🐾🐾

[bxrmom in reply to Kenu]

Glad everything went well with your pain specialist yesterday. Good luck today with the replacement of your feeding tube. Keep us updated when you can.

Jessie

[Hidden in reply to Kenu]

I got my blood test done yesterday and find a way not to be exposed to high risk/dangerous exposure to covid-1. Next step is hat to do about my scheduled cancel once 2nd ocravus infusion. Thank you for sharing how u do it,and showing us how things can be done. I get no help from my health care somehow i have to demand/figure it out by myself. What a bummer. It sucks!

[starlight5]

I don't know if it is up to each Dr or if there is an actual protocol regarding labs before an infusion. I have been on ocrevus for 2 years and I always ask my neuros if I should be having labs done before an infusion and am always told it is not necessary.

I had my last infusion the end of Jan.

[Hidden in reply to starlight5]

Thank you for answering. Got my blood test done at home. I don't know what the future will bring. I wish i had stayed on Copaxone! Now Ocravus infusion is a problem.

[NiCap]

I did the same thing for my second scheduled Ocrevus infusion due in April. Still haven’t gotten on anything and haven’t felt supported by nueros so just gonna ask for copaxone bc that seems the safest to me being one of the oldest so the most known researched consistent proven side effects and the least amount of relapses associated with getting off of it if you do decide you need to take a step further. Just my thoughts