here i am again 1 month out before ocrevus.

[pamgarner]

after 5 1/2 years i am so tired of the "crap gap". to those that don't know what that is refering to,when you are on ocrevus infusion every 6 months it is usually at 5 months you start to feel bad.one more month for me before treatment.i"ll make it but all I want to say is OUCH! this doesn't happen to everyone but it is a real thing.

[starlight5]

Sorry you have to deal with this every time. Will your insurance allow it any sooner if your neuro requests?

Thankfully it is not something I experience with ocrevus as I am currently over 7 months since last infusion.

[AriSmyelin in reply to starlight5]

Even if insurance allowed it hospitals wouldn't. You have to keep it every 6 months.

[Kenu]

I did this with Tysabri but was only the last few days. Can be a real pain in the……..but not much you can do. Take care 🙏👍🏼😉

[AriSmyelin in reply to Kenu]

As did I. And now I am doing it with Ocrevus. Super annoying. Same symptoms for it too.

[pamgarner in reply to Kenu]

again with patient heal thyself!

[kdali]

My experience has been different every time. Some people switch to Kesimpta because of crap gap, and do better.

[pamgarner in reply to kdali]

i am realllly thinking about it🙃🙃

[kdali in reply to pamgarner]

It's worth a chat with your MD! There's a Kesimpta group on Facebook with people sharing their experiences with making the switch, and I found it to be quite helpful when it was my turn.

[AriSmyelin]

OMG!!! I almost told someone about that when they asked about Ocrevus but frankly don't want to scare them. I have never heard it called the "crap gap" before. Best description ever. And yes, it is totally a real thing. For me it is headaches an migraines constantly. Along with every other issue you can have with MS.

[JMWCO in reply to AriSmyelin]

😭

I can tell I’m ready for my next dose. I’m more “eh” but alas it’s only a few weeks and cause my b-cells are less than 1% they wouldn’t move it up even if it cause me to feel better - they say insurance and hospital policies 🤷🏻‍♀️

[AriSmyelin in reply to JMWCO]

I can always tell I am ready, unfortunately I can tell about 2 months out.

[rjoneslaw]

I just had my o infusion in janI know what you mean my hand started to become weak

[pamgarner]

my dr. did say,if you go in for blood tests when you start feeling bad and see if ocrevus is still in your system,if not then the insurance will consider it

[ahrogers in reply to pamgarner]

Someone else here was able to get it sooner than 6 months. I remember when I was on the Ocrevus trial I actually got it more like 5-5.5 moths apart and wasn't sure why when they said it was every 6 months. When the trial ended in 2018 and I moved across the country it has been every 6 months. I do notice some increased fatigue a couple weeks before.My CD 19 count is always zero though so don't think I would qualify for the shorter dosing cycle.

[pamgarner in reply to ahrogers]

i amm going to call gen tech before this is over and i forget

[mcknighm in reply to ahrogers]

insurance won’t cover if i get infusion before 6 months. i wish there was another medication for primary progressive ms that works better than ocrevus

[mcknighm]

oh my goodness I thought only I felt this way. I just had another infusion last week but was feeling bad actually 2 months before the 6 month infusion 🥴

[pamgarner in reply to mcknighm]

good golly! long time to go in between in misery☹️

[pamgarner in reply to mcknighm]

i hear you loud and clear,i have cried a river of tears this time, might be thinking about another med

[Neworleanslady]

I am in my 5 month crap gap now too.

[pamgarner in reply to Neworleanslady]

i hear you,it's lovely.....not!

[twooldcrows]

talk to your doctor and see if they will do it sooner for you ...can't hurt to ask ...

[hairbrain4]

After my last infusion the "cramp gap" was the full 6 months + the 2 months from the previous infusion. O worked great for the 1st year. I wad so disappointed when it stopped working for me. I didn't go to Kesimpta cuz my ins wouldn't cover it & frankly I'm tired of injections period. 10 yrs of Copaxone did that for me. I'm now on Vumarity with no side effects & so far it's working at keeping symptoms at bay.

[kycmary]

Hi Pam I understand what ur saying I had that when I was on Tysabri, week 3 was my crappy time. I'm happy to say I'm not doing that on Ocrevus at least not yet. In june I will finish my fourth year. Mary

[pamgarner in reply to kycmary]

good for you, yippee! I am 1 week out before treatment