Starting my first avonex inject this Friday !

[CNDGirl]

JSY,

Thanks for your reply. I think I am going to try some benedryl. I also noticed that there is Advil PM and Advil Cold and Flu available and I might give that a try.

I am sure the regular Advil works on some level but not enough to keep away the shakes and chills. I know they don't even last long, but it's still hard to go through. I am hoping that this only lasts a couple of months and then it's not so bad.

Thanks again for your suggestions.

[Nanobaby]

yippie I got through my first injection and as many of you indicated, it was not a big deal! Iced the area, had premeditated , only had to take a 1/4 dose for first inject, so feel lucky. The only thing that happen a few hours after inject was a bit of a racing heart rate,also felt like my heart was beating in my throat. You know that feel when you have had way too much coffee ? So I just took a Xanax and layed down for a while. Prior to the laying down I had kept active, helping my husband handle our horses so I didn't go directly to inactivity after the injection. Moving around would seem important to get the med moving through your muscle and body. But holy cow, I'm done with my first experience!! Thanks to all who support each other with this darn disease. It's quite a brother and sisterhood we have here and so valuable!!

That's awesome that your first injection went so well

[Skatergl]

First injection

I just has my firstAvonex injection and have been feeling lousy since about 4 hrs after. I had drank plenty of water and taken Aleve but got a pounding headache, fever and racing heartbeat. The shot was only for half a dose... Very worried about the rest of my night and next week... I am so overwhelmed with all this! Any suggestions?

[Justsayyes]

I just has my firstAvonex injection and have been feeling lousy since about 4 hrs after. I had drank plenty of water and taken Aleve but got a pounding headache, fever and racing heartbeat. The shot was only for half a dose... Very worried about the rest of my night and next week... I am so overwhelmed with all this! Any suggestions?

Skatergl, I feel badly for you. My first several shots were so awful, and no matter how much medication I took I continued to run a fever. When I started taking 10 mg. prednisone 6 hours prior to my shot, side effects calmed dramatically.

I still take 2 Aleve an hour prior to my shot, and another dose 4 hours later. Been taking Avonex over 8 years now.

Do keep in contact with your neuro for advice on how to get thru this. Most people do have side effects reduce over time, often around the 3 month timeframe.

[CNDGirl]

Skatergl,

I sympathise with your situation. I am not going to lie after the first 4 titration shots I felt pretty bad. After the first shot I felt bad the following 24 hours. Although now I am on my 6th shot, 3 full doses, and my symptoms are now limited to the 7-8hours following the shot. The heart racing/pounding and headaches are something I share with you. I also usually get the chills/shakes really badly.

This week I decided before I took my shot I would go to the pharmacy and buy a slew of products. I was ready to buy anything and everything the store had that would help me sleep and take away the chills/shakes (they bother me more than the hot flashes and pounding headache). Anyways I had a nice long chat with the pharmacist. I told him how my therapeutics nurse suggested Advil with the shot and then follow 4 hours later with Tylenol and another 4hours later (8 hours since the first) with Advil again.

The pharmacist suggested I just take 2 extra strength Tylenol with the shot, or minutes before the shot, and follow with more Tylenol 4 hours later. He said that when it came to the chills Tylenol was better at stopping them than Advil. I took his advice an only left with some Tylenol (prior to this I always used Advil) and also picked up a pack of Advil PM in case. While I was there I asked him about cold and flu medications. He told me that if you look on the package it’s the same as Tylenol PM and Advil PM. They have some Benadryl added because it will relieve congestion and cause drowsiness.

Anyways very skeptically I followed the advice of the pharmacist. I took 2 Tylenol 10 minutes before the shot and waited to see what would happen. I took my shot at 7:30PM. I would always get the chills/shakes 2 hours after the shot. Last night nothing happened. I was able to go to bed at 10 and sleep until 1:30. I believe this is where I made a minor mistake I felt fine so I drank some water and tried to fall back asleep. I was debating trying the Advil PM but I was worried that it would keep me up since I’ve had adverse reactions to medications that cause drowsiness before. I started to feel the chills come on so I decided I had to take something right away. I only took one more Tylenol. 30min later I was asleep.

This morning I got up at 6:30 with my daughter. I have a 21 month old who is an early riser. I felt a little tired but fine. I am amazed. No chills or shakes, no pounding headache where my heart feels like it’s going to explode through my head and no hot flashes.

I know others have said that Tylenol didn’t work for them but it worked great for me. Unfortunately Advil hasn’t worked for me. I confirmed with my nurse and she said that they are monitoring my liver enzymes so I can use Tylenol with my shot. She says it is fine in moderation so if I only take a couple one time a week I will be fine. She still recommended that the second dose be Advil instead of Tylenol, which I might try next week.

I really hope that you stick with Avonex. My understanding is that it takes a couple of months to get use to and it’s better to be on it at least 6 months so they can see if it’s helping you. Like I said I haven’t been on it long, but I believe I need to be on something and I like the once a week shot. If the remaining times go like last night, I will have no problems staying on it.

I hope I have helped you a little.

[Michele48]

I have taken my 4th injection of Avonex. I have had minimal side effects. Headache, muscle pain and fatigue. I am really struggling with the fatigue. I inject on Fridays, then spend most of Saturday in/out of bed. Injecting was a little scary but it isn't as bad as I thought. The needle is super fine and I can hardly feel it. Before I inject, I take 800 mg Ibuprofen (about 2 hrs before) and I drink tons of water. It helps to have my husband and my 5 yr old daughter by my side for support. My daughter is my "nurse", she puts on a band-aid after my injection.

[Nanobaby]

Michele48, that is a cute story about your daughter!



It supposedly takes our bodies anywhere from 3-6 months to adapt to Avonex and have the side effects diminish. As for fatigue, I take my shot on Wednesday nights and usually don't remember Thursday, like a creepy movie where I lose time I just had my 4th shot this past week (full dose) but I also went swimming beforehand. So I'm not sure whether to attribute the fatigue to Avonex, MS, or swimming (which I haven't done in over 10 years )

[ShootingStar63]

I've been taking Avonex since September '11. I also did the titration thing, and have had no flu-like symptoms. Sometimes I feel a bit "blah" the next day, but nothing bad.

It's a LOT better than Rebif or Copaxone, for me anyway.

[Skatergl]

Side effects

Skatergl,

I sympathise with your situation. I am not going to lie after the first 4 titration shots I felt pretty bad. After the first shot I felt bad the following 24 hours. Although now I am on my 6th shot, 3 full doses, and my symptoms are now limited to the 7-8hours following the shot. The heart racing/pounding and headaches are something I share with you. I also usually get the chills/shakes really badly.

This week I decided before I took my shot I would go to the pharmacy and buy a slew of products. I was ready to buy anything and everything the store had that would help me sleep and take away the chills/shakes (they bother me more than the hot flashes and pounding headache). Anyways I had a nice long chat with the pharmacist. I told him how my therapeutics nurse suggested Advil with the shot and then follow 4 hours later with Tylenol and another 4hours later (8 hours since the first) with Advil again.

The pharmacist suggested I just take 2 extra strength Tylenol with the shot, or minutes before the shot, and follow with more Tylenol 4 hours later. He said that when it came to the chills Tylenol was better at stopping them than Advil. I took his advice an only left with some Tylenol (prior to this I always used Advil) and also picked up a pack of Advil PM in case. While I was there I asked him about cold and flu medications. He told me that if you look on the package it’s the same as Tylenol PM and Advil PM. They have some Benadryl added because it will relieve congestion and cause drowsiness.

Anyways very skeptically I followed the advice of the pharmacist. I took 2 Tylenol 10 minutes before the shot and waited to see what would happen. I took my shot at 7:30PM. I would always get the chills/shakes 2 hours after the shot. Last night nothing happened. I was able to go to bed at 10 and sleep until 1:30. I believe this is where I made a minor mistake I felt fine so I drank some water and tried to fall back asleep. I was debating trying the Advil PM but I was worried that it would keep me up since I’ve had adverse reactions to medications that cause drowsiness before. I started to feel the chills come on so I decided I had to take something right away. I only took one more Tylenol. 30min later I was asleep.

This morning I got up at 6:30 with my daughter. I have a 21 month old who is an early riser. I felt a little tired but fine. I am amazed. No chills or shakes, no pounding headache where my heart feels like it’s going to explode through my head and no hot flashes.

I know others have said that Tylenol didn’t work for them but it worked great for me. Unfortunately Advil hasn’t worked for me. I confirmed with my nurse and she said that they are monitoring my liver enzymes so I can use Tylenol with my shot. She says it is fine in moderation so if I only take a couple one time a week I will be fine. She still recommended that the second dose be Advil instead of Tylenol, which I might try next week.

I really hope that you stick with Avonex. My understanding is that it takes a couple of months to get use to and it’s better to be on it at least 6 months so they can see if it’s helping you. Like I said I haven’t been on it long, but I believe I need to be on something and I like the once a week shot. If the remaining times go like last night, I will have no problems staying on it.

I hope I have helped you a little.

Thank you so much, when reading about others, it makes me feel like i am not alone - my kids are older (youngest is 12) so they can do things on their own i'm not up for it. I am not totally on board with medicating as was just diagnosed at 45 with only 1 episode... Having to slow down and miss work is disturbing but i'll do it - doing my second shot tonight a little later with Tylenol before, then advil and benadryl before bed. I am on antibiotocs and steriods for sinus infection so we'll see if it affects anything...

I hope you are improving every week, that would make it easier. Your story really touched me - good luck!