Ocrevus question : Hello I recently had... - My MSAA Community

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Ocrevus question

jkdavid99 profile image
17 Replies

Hello

I recently had my 3rd full dose on September 27th. Now almost a month later i feel like i have a lump in my throat. This happened last infusion also. It ended about 3 months into infusion but now its back. Not having a issue swallowing or breathing last infusion i thought it was pollen since it was almost summer. I'll call neurologist tomorrow. It comes and goes most of the day. Its uncomfortable when it happens.

Has anyone ever experienced this?

Thank you all

Jenny

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jkdavid99
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17 Replies
rjoneslaw profile image
rjoneslaw

I haven't.

Can you keep us updated on what is happening?

Jesmcd2 profile image
Jesmcd2CommunityAmbassador

I haven't either, or heard of it before. I would let someone know. 🤗💕🌠

Let us know! Feel better!

Juleigh21 profile image
Juleigh21

That could be serious! Please let us know what your health team thinks.

carolek572 profile image
carolek572CommunityAmbassador

No, that hasn’t happened to me, but if it did, I would talk to my health care provider as soon as possible. Better safe than sorry 😐

ahrogers profile image
ahrogers

Starting about a week after my infusion the glands in my neck swell a little bit and are tender for a few weeks. I didn't notice it the first couple infusions but have every time since. I have had a total of 8 doses now (counting the two half doses as one dose). This last time it seems the glands seem to have stayed a little enlarged but not tender for longer.

I forget to mention it to my neurologist as it is always 4 months after it has gone away before I see her. I would be interested to see what your neuro thinks of it. I just chalked it up to how the drug was affecting my immune system. Mine did not interfere with my swallowing either.

jkdavid99 profile image
jkdavid99 in reply toahrogers

Thank you for this. Somehow i missed this post Yes yes yes it feels like my glands are swollen in the neck. Last infusion lasted for about 4 months so this is real. I do feel fine though this is just annoying. Thank you now i dont feel crazy

mm1527mm profile image
mm1527mm

This happened to me. It seems to have mostly gone away now and did not start until about two weeks after infusion. I had post nasal drip and my ms dr said hAndle it with your primary dr it is not related to ocrevus and then i went to dr and my glands were swollen in neck like ahrogers mentioned. Everyone was telling me its anxiety and i knew it was not. It never happened after first half dose but it started two weeks after second half dose but is almost gone. I also have bad allergies this time of year and had a little cold.

jkdavid99 profile image
jkdavid99 in reply tomm1527mm

Thanks like i said to ahrogers i feel this also. Now i don't feel cazy anymore.

Thank you

pamgarner profile image
pamgarner

so glad you are getting checked out.I believe Auto immune cells and lymph nodes have a connection.let us know what's going on

Jackjosh profile image
Jackjosh

I get a sore throat after infusions for a few months but it eventually goes away never had to wear it feels like a lump but I get really bad allergy issues after

Cutefreckles72 profile image
Cutefreckles72

I haven't had that problem yet. I just finished my second infusion so I am in a" waiting mode" now to see if anything happen. Keep us posted. I know everybody is different but I need to know what to look for.

jkdavid99 profile image
jkdavid99

Thank you everyone just got off the phone with my neurologist office. Dr's note says he hasnt heard of it before. I will call the drug company next

in reply tojkdavid99

Yes, do that. Everytime I order a Copaxone refill, I get asked if I have any side effects.

Pia7 profile image
Pia7

I haven’t had this happen to me. However, my neurologist at UCSF is very cautious about a cancer connection an has stressed that I get a yearly mammogram without fail while I’m on Ocrevus. Please keep us posted.

kdali profile image
kdali

No, but I didn’t have any itching or throat sensations during the infusion or after.

It’s a common symptom of MS, Hashimoto’s, and anxiety disorders...there’s a few things that could be checked on. I hope it goes away!

Kaiyabear profile image
Kaiyabear

I haven't had anything like that happen to me. I've had 5 doeses so far & find it the best medication currently. I tolerate it very well. I've had the m.s disease now for 17yrs & through 5 different drugs that didn't work like this one. I'm happy 😊 and thankful that the 6th drug (ocrevus) patients have this newer drug!!

let me know everyones story! i love reading about everyones story!!

Jess

jkdavid99 profile image
jkdavid99

The only thing i have found out is from genentech saying that there have been upper respiratory side effects. i feel fine this is just annoying. Neurologist says he can get me in sooner if i need to but i have a MRI in November so i will just wait and maybe it will go away. I don't feel like it is a respiratory virus. I will let you know if i find out more

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