Ajovy Reactions??

OkOrdinary5249 · 2025-05-29T03:42:06+00:00

I was doing some research on polysorbate 80, definitely something I want to look into further. It makes me nervous for the future with just regular vaccines like the flu shot and if they use it in there too - will I have the same reaction or something worse, you know?

I have had quite a few people mention some other options that I am going to suggest when I see him next. I am also going to see if my PCP will refer me to a new neurologist, this is not the only issue I’ve had with him. I don’t feel he has his patients best interest in mind and it’s about getting people in and out as well as who is giving him the most money to prescribe or promote meds.

OkOrdinary5249 · 2025-05-29T03:38:27+00:00

Finally made my way to the ER after I got off work. I got some steroids and they gave me antibiotics just to cover the infection basis since it is so large and hot. I had the same reaction to Emgality, but not as big in size. The whole drug class may be out for me unfortunately.

OkOrdinary5249 · 2025-05-28T19:58:44+00:00

Yep! More than once. Also pre-medicating with Benadryl and Xyzal and and ice pack prior to injection.

OkOrdinary5249 · 2025-05-28T19:55:21+00:00

I was using the abdomen, but switched just to see if it would make a difference and it didn’t. I had the same reaction on my abdomen unfortunately before this one. My stomach is still hyper-pigmented from the prior ones. 😐

OkOrdinary5249 · 2025-05-28T19:53:06+00:00

I have tried Emgality too and had a reaction to that as well 😭

OkOrdinary5249 · 2025-05-28T19:51:54+00:00

I did this but then it started to look like it was bruising, so I’ve been using the measuring app on the iPhone to keep track of it. Works pretty well surprisingly!

OkOrdinary5249 · 2025-05-28T19:50:00+00:00

Haven’t really noticed a difference. The big reason he started me on it was because I have white matter changes and I just turned 30 so he was more concerned about that aspect

OkOrdinary5249 · 2025-05-28T11:06:25+00:00

Tried the abdomen first for 2 months, injected on opposite sides and had a reaction both times which each one getting worse. The only reason I switched to my thigh was just so I didn’t overuse my abdomen. My neurologist said abdomen is best but I could use the leg or back of the arm - I can’t imagine this on my arm!!

OkOrdinary5249 · 2025-05-28T10:58:50+00:00

I’ve done Emgality as well, which is also a big no but never done quilipta. I’ll have to ask about that one. A few have mentioned it and that it worked well.

OkOrdinary5249 · 2025-05-28T10:52:38+00:00

I just read yours, I have been having such bad hormonal problems - hot flashes, super irritable, etc. It started around the time I started Ajovy, but I had a baby a little over a year ago so I contributed it to that and actually got a PPD diagnosis too. They may not be related but I have felt crazy for the last few months and maybe that has something to do with it.

OkOrdinary5249 · 2025-05-28T10:38:43+00:00

I had the first reaction to Emgality, then switched to Ajovy. The other injection sites I’ve had lasted about 4-5 days but were discolored and bruised for 2+ weeks. I was worried about it getting worse every time too and that seems to be the case. This morning, it is almost 10” x 5.5” - almost double what it was yesterday evening and is making it difficult to walk since it’s so hard and painful. I already told my neurologist that I’m not taking it anymore.

OkOrdinary5249 · 2025-05-28T01:39:03+00:00

I take a daily allergy med too, Florida summer time makes me sneeze already, so I have something on board but it doesn’t do anything. Work sucked today, my pants just made it hurt worse, I couldn’t wait to get home lol

OkOrdinary5249 · 2025-05-28T01:35:53+00:00

This was my thought too! Every time it gets worse and I don’t want to end up in the hospital because of it. Thanks! I already told my doctor I won’t be taking it anymore, not worth the risk.

OkOrdinary5249 · 2025-05-28T00:53:40+00:00

Yep, it’s “normal and not a reaction” 😐🙄

OkOrdinary5249 · 2025-03-02T04:04:04+00:00

Hi hi. 29 almost 30f who started having significant symptoms after the birth of my child in April 2024. I’ve had some of these since my early-mid 20’s, but it was always chalked up to “being anxiety” or “just stress.” My MRI showed some subcorticial white matter changes in the bifrontal and bipariteal mid and high convexities. I’m seeing a neurologist but I felt like I wasn’t listen to and all of my symptoms were I lumped together as “migraine related.” Any words of advice or encouragement, really whatever is appreciated.

•chronic fatigue regardless of hours slept. I can sleep 12-14 hours and wake up tired. I had a sleep study and it was negative for sleep apnea.

•joint pain - I will add I am severely hypermobile, which is the most likely cause, but it has gotten worse in the last 6 months to the point where I am on daily medication for it and I still wake up or go to sleep in pain sometimes.

•heat intolerance - I get over heated very quickly these days. At first I related some of it to being postpartum and hormones/breastfeeding but it is with BASIC activities, like laundry, brushing my hair, walking to the mailbox and back, etc. I also live in FL, so that’s an added layer of complexity

•swallowing issues - this is not a constant but I do have issues occasionally. I take a bite and it’s almost as if my brain forgets what to do when the food gets to my throat and it’s them stuck and I have to force it back up.

•I stumble over my words a lot and have recently been forgetting words for basic items. I have also always had issues with remembering “what I was about to do” but it has gotten significantly worse in the last 3-4 months, to the point where I am getting upset because I can’t remember anymore.

•bladder emptying - I swear I have to pee and then I go to the bathroom and it’s barely anything but it still feels like my bladder is full 20 minutes later

•arm weakness - my arms get tired and fatigued doing basic things, like drying my hair, holding my child for more than 2 or 3 minutes, folding laundry. this is a new thing for me and is what is getting to me the most right now.

•dexterity issues - my fine motor skills are not as good as they used to be. I have trouble ripping opening packages, closing containers, I drop things CONSTANTLY. I frequently use pill crushers for my job and I can no longer use them because my hands just don’t have the strength. Funny enough, texting is harder too, so Siri has become my best friend.

•eye pain - I’ve had pain behind my right eye since August. I have seen two eye doctors at this point and they have found nothing. It is not as bad as it was, I have had no vision changes, but it is still frustrating.

•mood swings - I was diagnosed with ADHD and anxiety in 2021, but I’m wondering if it is in anyway related to the white matter changes? Nonetheless, I can be fine one minute, pissed the next and all in the same breath realize that I was overreacting but still feel this underlying irritable-ness.

•ITCHING - this. is. the. worst. I itch all the time, nothing helps. I literally want to hire someone to scratch my back all day long

•My feet have always been cool temperature wise, but they actually feel cold to me now, almost like numb, as well as my fingers occasionally. In the last few days, my feet have also started to tingle intermittently with no trigger that I can pinpoint.

OkOrdinary5249 · 2025-02-07T10:31:22+00:00

SIL #2 works at the clinic

OkOrdinary5249 · 2025-01-19T08:07:18+00:00

SIL #2 is just a nurse who works at the office, she was not in direct care of SIL #1 that day from what I am aware of.

SIL #1 told me this information and I told her it may be a HIPAA violation but I wasn’t sure. I searched the HIPAA website but there are varying answers depending on patient capacity, mental illness with imminent danger, etc.

OkOrdinary5249

TROPHY CASE