G'Day ms. Friends and Family. I hope YOU are all well and coping in your own way with this, incurable progressive disease that we all have.
I have learned this about Ocrevus. Your pee (urine) is going to smell, it is going to smell and a scary shade of yellow. YOU can dilute it a little by drinking lots of water. I mean 6 to 8 cups per day. That is around 1.5 litres. YOU do have to do this every day and it is a side effect of the drug. NOT a big deal, but remember to wipe well.
The infusion process is not a big deal just rather long and boring.
The important bit, it is rather (VERY) expensive. and I mean expensive, BUT the good news is that they seem to have a generous Patient Assistance Program, no I have no need to use it but they did inform me of it, if I needed to make use of it, something to be aware of.
As always I will state the obvious. YOU have this disease, NOT your doctor, Not your insurance company, so act like it. Take control of your illness as best YOU can.
Always be strong and have a good day,
Royce
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RoyceNewton
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I was born and still live in the UK, so the NHS covers all my stuff (thank you medical exemption certificate ❤️). I got curious one day about the costs of tysabri and ocrevus, and I found that although tysabri is cheaper per dose, it costs more per year compared to ocrevus. I was tried on tysabri, but from the bloods they took on my 1st dose, I had to stop and go back on copaxone whilst my neurologist built up a case for me to get me onto ocrevus. I now know I have high JCV levels, but I'm now thankful that I can walk, rather than roll, in my house again 🙌 Figured that out after my 1st starter dose! 🤗
Oh, I know!!! 😳 I wheel myself around when me and the husband are shopping, and I'll sometimes have to have hubby push me, and the trolley, around until my arms are rested enough to start again. I'll even get hubby to sit in the wheelchair when we're in a big shopping centre so I can push him around! We have big laughs when stuff like that happens, and if I need to sit down, he'll try and roll himself around, with me having to remind him it's tank controls, and then he'll end up nearly crashing into something/someone! 🤣🤣🤣🤣
Be careful... Ocrevus makes you immuno-depressed. So you might get UTI more easily along with other infections. UTIs can show up as changed in color in urine and bad smell. I've had this.
don't put it always on Ocrevus. keep an eye on whether it's an infection.
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OCREVUS - I NEED INFO
Convo with my neurologist about Ocrevus.
