I had to miss my shot today. My OCD is yelling at me cos of it. I’ve not missed any in 6 months. The doc said it’s okay to miss a couple, though. I think I’m still recovering from the last shot cos I still feel nauseated just from moving around too much and I have a migraine that keeps coming back. My back/chest still hurts from the heave motions. Blah. It took THREE days to even get through to an actual person to do the new prescription and it still hasn’t been sent out. They can overnight it, but it’s like nobody is in any rush to be helpful.
I did get my welcome kit and new injector. It came with a pen and wipe board thing to mark where I do shots, a place mat for the supplies, needle container, etc. More than what the other place gave. At least I can use some of that stuff. I was tempted to just do the shot with the new meds but I really don’t wanna be sick again. I can deal with the 5 hours of flu symptoms, and maybe even the chest feeling that lasts a couple minutes, but the vomiting I’m so not a fan of and never have been. Or the stomach cramps!
Nervous to even do the old shots and really just wanna stop all together cos I’ve gotten worse anyway so it’s obviously not doing much. But I’ll wait to see what the MRI results say. Whenever I manage to get there and have those done. With and without contrast so that’d be 2 brain scans, 2 cervical scans and 2 thoracic scans.
In my last post I mentioned my meds were changed to another brand with no notice. (Generic Copaxone / Glatiramer Acetate manufactured by Mylan to this Glatopa manufactured by Sandoz.) Still waiting on getting the injector for that. Saturday’s shot hurt but was probably a fluke. Today’s shot did not hurt at all. I managed to snip the needle off and put the cap on before I had the WORST reaction since being on these shots.
My mom was in the other room on the phone and I tried calling to her but couldn’t catch my breath. There was this horrible wave of a feeling that went into my chest. I think people have described it as a possible heart-attack, but I don’t know how I’d explain it. It was a bad tightness, my heart was pounding, I just felt really weird and it was scary! The only positive is that this is the one side-effect I was dreading since I started Glatiramer Acetate 6 months ago. Mom came in (said I was beet red) and I had my hand on my chest so she got a little bucket, thinking I was sick. I finally told her it was my chest and she wanted to call the hospital but I said no. She had to go find the new number to call the med nurse. He was really nice and said it was something that can happen but might be another year before I had it happen again.
I had an ice pack around my neck and eventually, after a very long minute or two, the feeling went away. Then came the second wave. I felt like I was gonna be sick. I broke out in a sweat, had half a dozen dry heaves and finally threw up the small amount of water (all I had all day cos I had just gotten up and took my thyroid pill). Next wave came. Stomach cramps. I couldn’t tell if it was from the heaves or it was upset so I went into the bathroom and after 5 minutes I had a bowel movement. Stomach still hurt, though. I went and laid down. Next wave. Chills, even though I was hot on the outside. My temp is always 97.6 or so but it was 96.3 and then 96.8 so no temp but kinda low for me. Turned up the heat, added another blanket, stopped shaking after a bit. I rested for a while and battled an awful migraine (pressure from heaves I assume). Was super weak and ached some. Had a spasm (usual) and hurt a leg muscle.
Got up to pee and was thinking about getting something to eat. I thought I looked more pale than usual. Sat back down on the bed and another wave of heaves and finally got sick a bit more. Then I had mom fix me some toasted honey wheat bread with strawberry jelly cos I figured I needed some food and at least if I got sick again, it wouldn’t just be empty stomach heaves. I took 2 Tylenol but they barely worked. I had a few fries and got online to type this (some times getting online is awful with a migraine and some times it helps take my mind off the pain). Just wanted to share this in case someone else goes looking for similar stories.
Anyway, mom called the pharmacy and they said they’d tell the FDA about it. She called someone else and was told they’ll cancel my next order of Glatopa and to get a new RX from my neurologist saying I NEED to be on the Mylan brand and no substitutions. She left a message and when they call the place, I’ll have it sent right out. Honestly, I don’t know if it was just my time to get that particular side-effect, or if it was cos I changed brands. But I don’t wanna go through that again. Though I am very glad I knew it was a possible reaction so I was sorta prepared for it. All the stuff after it wasn’t fun either! My body was just determined to get this stuff out of my body. Hopefully it’ll be okay now.
My specialty pharmacy sucks SO much. They screw up 90% of the time. They’ve said when my meds would be here, we’d wait around, nothing. Call and get told there was an issue and have to get that straightened out. They’ve had to ship it overnight so I get it in time cos they won’t send it soon enough before I run out. Last time they said there was a problem with the Humera and I’ve never been on that but they had no clue WHY that was on my list as something I was on! This time I got my meds, opened it up and they’ve changed manufacturers so it’s the same med but made by another company. There was a note in the box saying I need to contact that place to get a different autoinjector. Called their 24/7 hotline and was told nobody was available and they’d call back. That was Friday. Still no call. The site says 24/7 but then another page says 8am-8pm M-F. Well it was 5pm when we called and still nobody could help! Same thing happened with the other company, though. I did my shot manually today and boy did it HURT when I put it in! A tiny sting is normal but this was OUCH and I hope it was just a fluke cos I am NOT putting up with that every time.
Called the pharmacy and they put mom (she does the calling) through to a nurse who said we’d have to call the manufacturer. Why?? If the pharmacy changed meds and didn’t tell people, THEY should have had to hook us up with the right tools!! So she called my insurance provider and that woman....hung up on my mom in mid sentence. I am done with MS and all the idiots who make it way more stressful than it already is!
