I had my Ocraves infusion last Monday. Since my left eyelid is swollen and painful, I have a zit the size of a mosquito bite and my body hurts all over. (More than usual) I’m curious if anyone else has experienced anything like this? I’m a person who rarely gets zits also. My eye thing- I keep telling my husband I’m like that scary guy from Goonies. “Hey you guys”
Help if you can
Sheree
Welcome! That happened to me also. A week later my eyelashes fell out, grew back very short, and kept falling out for 3mo. I saw an ophthalmologist and was given a fancy eye wash with massage pads and a heated mask. Eventually I took a medication to grow my lashes back and it worked, but it takes months . Another interesting side effect was that my eye pressures ran high, so the optho monitored and treated this also. I had no obvious vision change from this problem. I believe I had inflamed eyelids for 9 months.
I don't remember having cystic acne, but that's a common issue with steroids. I had an increase in spasticity, which made everything painful and heavy to the point where climbing stairs at night was quite an adventure, so I had to double my meds during that 3 months also. I have read on forums that others have had leg problems they describe as worse than normal after the infusion also, but I think theirs went away soon after 🤷♀️ I would report all this to my neuro and seek out an optho to check my Goonies look. GL!
Thanks for your reply. Good stuff, not really but helpful 😊
You're welcome! If you don't already have an optho, just about anyone can refer you...neuro, general practitioner, optometrist, or maybe some don't require referrals. GL!
Hi Sheree, I often have some sort of issue with a sore pimple inside my nose, weird huh. Happens after Ocrevus. When I first started with O I got upper respiratory infection twice never had that before O. Now nose thing. Been dx and on O since 2018. Not sure you need antibiotics but you should call dr. BTW love sense of humor hang on to that.
hi and welcome! I’m on kesimpta as I can’t take ocrevus cause of cancer gene and risk with it. My cousin was on it and had nothing but sicknesses. She is switching but I wanted to say lmao at the Goonies reference l!! I seriously giggled! Thank you!
I got a rash on my face during my first half infusion that went away with a cool compress and slowing the infusion. Did not get it again. I have been on Ocrevus since 2016. For the first couple of years I would get swollen tender lymph nodes in my neck that lasted about a week or so. I agree with kdali you should report it to your neuro and ask for opthamologist referral. I used to have to go to the opthamologist every 6 months when I took Gilenya because it had a possible eye side effect. I only ended up taking it for 6 months before a relapse so only had to go to opthamologist for a couple years.
Luckily I didn't have hair loss or really any serious side effect from Ocrevus so far. I have only had one UTI since starting and I feel was unrelated to the Ocrevus. I have had UTIs before and know how I got it. I have had no new lesions since starting it either so that is good. I wish I started on it sooner so I had less lesions. The ones I have are starting to scar down further and causing some atrophy in my spinal cord. That is causing worsening of my symptoms.
Other general advise is to exercise to the best of your ability. Request a referral to PT if necessary. Exercise stimulates the body to try to repair the demyelination. It can't repair it correctly but what it can do can help some. Also, keeping your general health at its best by not smoking, alcohol in moderation and a healthy diet will improve your abilities.
Welcome to our group!
just wanted to say welcome and i hope you feel better soon.🤗
Your diagnosis, can you relate and questions I should ask
Hi, I'm Bonnie and I'm new here
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Neuro appt and answer to some of my ?s
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