how long between ocrevus

[pamgarner]

I have been so busy,my husband has been a very sick boy,he has to have heart valve repair work done, he is on dialysis 3 days a week and they are pulling 4 to 5 # of fluid off time 3 days a week.he has heart failure and kidney failure.can't do heart surgery until he is stable.soooo my 6 month appt for ocrevus was up last month and they are 70 miles away.has anyone missed their ocrevus appt. and do I have to start over with 2- 1/2 appts. and how long between was it for you.planning in my head sooo busy thanks pam

[Kenu]

🙏😉🤗👍 Ken 🐾🐾🐾🐾

[Goldilockssearching]

Oh Pam, so sorry to hear about your husband’s current state. The most I’ve gone is an extra month (Covid precaution-pandemic had just began) but that’s because my B cells were starting to return at that point and both my doctor and myself insisted that I go. My doctor has told me some people can go months over the six months and they’re fine. could you get your CD 20 count and find out where are your B cells are at? Mine had started to re-populate” to he point that it was no longer an advisable option for me to wait any longer. No you do not have to start over if it’s only been a few months over. I think you only start over when you’ve actually stopped treatment for long enough that it would be considered newly introduced.Another option is there an infusion center closer to where your husband is getting care that you could get your infusion at?

[Raingrrl]

I’m so sorry to learn about your husbands health challenges!

Please contact your neuro about your Ocrevus infusion. You shouldn’t have to start over with the half doses but the timing of the next infusion should be worked out between you and your doctor. Ask if there is a closer location for the infusion if you haven’t already. Some insurances will only pay for infusions done at specific types of locations. I have to get mine done at specific type of outpatient clinic. We are all different with different situations though. And please don’t delay the call. It won’t do your hubby any good if you have a flare up.

Fingers crossed for you.

[Boxofchocolates]

I’m sorry to hear about all your husband is going through! I know that must be difficult.

I am not sure about what your doc will say, but it doesn’t seem like they’ll make you go back to the half doses.

I hope they can schedule something closer to home for you; 70 miles is a lot!

[goatgal]

If my memory is accurate, because of the circumstances, it may be possible for your Ocrevus infusion to be done at home. When you check with your neuro, ask about this.

When I was on solumedrol for 5 days, after the first infusion in hospital, the remainder were done at home. The hospital arranged for this because of distance (50 miles);a visiting nurse provided the infusions. It was covered by Medicare and my insurance.

[ahrogers]

Sorry to hear you and your hubby are going through so much. I hope he gets the valve fixed soon and his heart failure improves.I was delayed about 2 months when I moved and had to wait a long time to get in to the new neuro. I did not have to do 2 half doses.

goatgal suggestion is great, check to see if you can get it at home. I know at least one of our friends here has done that. I would guess a closer infusion center would require your neuro to be on staff in order to treat you but not sure.

[pamgarner in reply to ahrogers]

yes i will thanks for responding🙂

[pamgarner in reply to ahrogers]

exactly,my dr told me he is not on staff at our hospital and if i have a problem h couldn't help me, i tried a group of dr in town i really disliked them,so that is how i ened up 70 miles away didn't seem a big deal 11 years ago🙂

[JTZES]

Home care would be a great solution. The nurse would have to stay the whole time for observation and pump issues. My nuerologist has put me on a two run time. Before you check your insurance you need too check with his other doctor's and see if they would have issue with him receiving it and wouldn't it be a conflict with his other meds. When I was diagnosed with cancer they pulled me off for 2 years.If the doctors are ok with it check with your insurance company. Since this is supposed to be a compound medication the may directly turn you down. Explain to them the steroids can be given separately and the Ocrevus can be given. The hard part is keeping the Ocrevus cold getting it to you.

You have my sympathy on what you are going through. And the same for your husband. I'll keep you in my thoughts and prayers.

[wolfmom21fl in reply to JTZES]

its not that hard to to keep it cold. I was getting Mayzent shipped to me that has to be refrigerated and they ship in a large Styrofoam container filled with large ice packs via overnight delivery. they also include a this cool little thermometer thing that changes color if the temp does somehow get too high and advise you yo call right away if it is a certain color because that means the temp was not kept steady. But think about how they ship the drugs to the doc's offices.. they are all done the same way. Exactly the same way. there just might be multiple doses for multiple people in one shipment is the only difference

[JTZES in reply to wolfmom21fl]

I hope you can get insurance approval for it. You hang tuff with everything you have going on .

[pamgarner in reply to wolfmom21fl]

thank you, sure going to try, that would be an answer

[pamgarner in reply to wolfmom21fl]

thank you

[mrsmike9]

So sorry to hear about your husband! That's tough for both of you.

[pamgarner in reply to mrsmike9]

thank you, i left out the part where my septic tank had to be emptied and lightning came down and miss my front porch by 3 inches and went into the mud thank goodness,but my entire front porch and ceiling and car several feet away totally covered with mud while he was in the hospital,ever notice how things come in bunches???

[mrsmike9 in reply to pamgarner]

Yes I know! It always scares me when the first one hits as there will be more to come!

[Brindisi1]

Prayers for your husbands recovry & strength & peace to all.

[pamgarner in reply to Brindisi1]

this too shall pass🙂

[kycmary]

Hi Pam so sorry you are having to deal with so much, prayers are going up as I type.

[pamgarner in reply to kycmary]

power of prayer awesome!

[twooldcrows]

many prayers for both of you ...god bless both of you ...take care and get help with this what is going on ...love and prayers...