Side effects question....

A board to discuss the Multiple Sclerosis modifying drug Rebif

Side effects question....

Postby Bubba » Sat May 07, 2011 9:51 pm

I have been on the 44 dose of Rebif for over two years now. Never experienced any side effects. I could take it anytime throughout the day without worry.
Recently, I have had four seperate side effect flare-ups. These four occasions were beyond a doubt the worst four nights I have ever had in my life. They all happened within anhour to an hour and a half after injection. It is almost as i feel if I may have gotten a "bad batch"??? Has anyone else experienced this and had the same thought? Can there be such thing as a bad batch?
My side effect was fever, of the most severe nature. Like nothing I have ever experienced. Starts out with the general cold feeling skin, then rapidly turns achey, and continues into my whole body freezing so bad that I shake violently and constantly, no matter what I do, I can not get warm. It gets so uncontrollable that I cannot even sit up in bed nor retrieve and hold the pills much less hold a bottle of water to wash down the pill. My wife has to do it for me. One night during a "flare up" my wife gave me prednisone that she had left over, and almost immediately (within 30 min) my "fever" would start to go away, and eventually after a second dose of prednisone (approx 4 hours after the first dosea) thefever was gone. Just a worn out body left, tired and aching from the previous 8-10 hour episode. I asked my GP for a prescription for some prednisone to have at home on stand by. Thank God, because it has happened three more times. I end up having to miss work due to the following pain it causes and absolutely no sleep. Is prednisone a common treatment for this side effect flare up? Is it safe to use the steroid in this way? I mean, what is it that the steroid does to knockout the flare up? But I reckon what I really was curious about was have any other Rebif users experienced this? And it is possible that there is such a thing as a bad batch? After my flareup wednesday night, i cut friday nights shot back to the 22 instead of the full 44. However, I had another miserable attack after even the 22 dose. Now I am petrified to take it at all. I called my neuro and asked him to lower my prescription for mynext months supply to 22, but after last nights attack after a 22 dose, I have to wonder. By the way, how much more effective or whats the benefit of the 44 does vs the 22 dose? I see a lot of people using the 22 vs the 44 and was wondering why?
w/m 44
The problem comes with the decision of weighing the unknown with the unknown.
User avatar
Bubba
Family Elder
 
Posts: 486
Joined: Fri Feb 13, 2009 4:00 pm
Location: Turkey Creek, Florida

Advertisement

Postby patientx » Mon May 09, 2011 7:47 am

Bubba,

I don't have any good answers for you. It's possible you got a bad batch, but I would tend to think unlikely.

This is just pure speculation on my part, but I wonder if you are developing antibodies to the Rebif that might be causing your adverse reactions. What does your neuro have to say about them?
User avatar
patientx
Family Elder
 
Posts: 1068
Joined: Wed Sep 10, 2008 3:00 pm

Postby Bubba » Wed May 11, 2011 12:43 am

Haven't really had the opportunity to speak with my neuro. I called his office and left a message for him to see if he would decrease it to 22, and he did. I did 22 last night with no side effects. But it makes me nervous even doing the 22. Been on the 44 for two years problem free. I also thought about your idea, I think that maybe possible. I will try the 22 for a month or two and see if there is any change. The flare ups are so violent, it makes me nervous to inject!
w/m 44
The problem comes with the decision of weighing the unknown with the unknown.
User avatar
Bubba
Family Elder
 
Posts: 486
Joined: Fri Feb 13, 2009 4:00 pm
Location: Turkey Creek, Florida

Re: Side effects question....

Postby MSBOB » Thu Nov 24, 2011 3:23 am

I had just started getting bad flu-like symptoms from the injections. I spoke with a nurse from lifelines, and she said that if you aren't sleeping enough and drinking lots of water, this could make the symptoms worse. She also told me, which fits my case, that added stress from life events can also wear down the body's abilty to cope with the side effects. I think she is right. I don't know if this helps anyone, but i thought i would share here.

I have been doing fine fot the last 6 months before i got sick from the injections. It was like getting hit by the flu, but not the flu. It sounds like Bubba got it worse, but i can relate to the cold feeling and wiped out with crampy feelings and an annoying dull headache. I too was afraid to keep injecting, but i am better now. It only lasted a bit over a week, following the morning after injections.
User avatar
MSBOB
Family Elder
 
Posts: 123
Joined: Sat Mar 05, 2011 4:00 pm

Re: Side effects question....

Postby Bubba » Fri Dec 16, 2011 4:31 pm

Funny this was brought back up.
Here it is three years later without one flare up. I am certian it was a bad batch....
w/m 44
The problem comes with the decision of weighing the unknown with the unknown.
User avatar
Bubba
Family Elder
 
Posts: 486
Joined: Fri Feb 13, 2009 4:00 pm
Location: Turkey Creek, Florida

Re: Side effects question....

Postby Maledicte » Sun Dec 18, 2011 7:56 pm

Bubba wrote:I have been on the 44 dose of Rebif for over two years now. Never experienced any side effects. I could take it anytime throughout the day without worry.
Recently, I have had four seperate side effect flare-ups. These four occasions were beyond a doubt the worst four nights I have ever had in my life. They all happened within anhour to an hour and a half after injection. It is almost as i feel if I may have gotten a "bad batch"??? Has anyone else experienced this and had the same thought? Can there be such thing as a bad batch?
My side effect was fever, of the most severe nature. Like nothing I have ever experienced. Starts out with the general cold feeling skin, then rapidly turns achey, and continues into my whole body freezing so bad that I shake violently and constantly, no matter what I do, I can not get warm. It gets so uncontrollable that I cannot even sit up in bed nor retrieve and hold the pills much less hold a bottle of water to wash down the pill. My wife has to do it for me. One night during a "flare up" my wife gave me prednisone that she had left over, and almost immediately (within 30 min) my "fever" would start to go away, and eventually after a second dose of prednisone (approx 4 hours after the first dosea) thefever was gone. Just a worn out body left, tired and aching from the previous 8-10 hour episode. I asked my GP for a prescription for some prednisone to have at home on stand by. Thank God, because it has happened three more times. I end up having to miss work due to the following pain it causes and absolutely no sleep. Is prednisone a common treatment for this side effect flare up? Is it safe to use the steroid in this way? I mean, what is it that the steroid does to knockout the flare up? But I reckon what I really was curious about was have any other Rebif users experienced this? And it is possible that there is such a thing as a bad batch? After my flareup wednesday night, i cut friday nights shot back to the 22 instead of the full 44. However, I had another miserable attack after even the 22 dose. Now I am petrified to take it at all. I called my neuro and asked him to lower my prescription for mynext months supply to 22, but after last nights attack after a 22 dose, I have to wonder. By the way, how much more effective or whats the benefit of the 44 does vs the 22 dose? I see a lot of people using the 22 vs the 44 and was wondering why?



I'd call MS lifelines (8774473243)and give them the code on your box that you had the bad side effects
luckily ive had none,but since going to 44 it hurts like he** when i inject
http://www.etsy.com/shop/Maledictesjewels
Maledicte
Family Member
 
Posts: 51
Joined: Sat Dec 17, 2011 6:38 pm
Location: NW

Re: Side effects question....

Postby MSBOB » Mon Dec 19, 2011 4:15 am

Hold the syringe in you hand like a fist for about 10 minutes before.
User avatar
MSBOB
Family Elder
 
Posts: 123
Joined: Sat Mar 05, 2011 4:00 pm

Re: Side effects question....

Postby Froggie » Mon Dec 19, 2011 9:53 pm

Maledicte,

Sorry to learn of your bad reaction. It's possible that your body is taking awhile to adjust to the upped dosage. I know when I started on the 44mcg I experienced flu-like symptoms in full force. I do my injections at night and dealt with intense chills and feeling feverish. I felt exhausted and achy as well the next day. Do you take Ibuprofen at all? I take 400-600 mg about 1/2 hour before my injection which helps a lot. I've been on Rebif for almost two years now and have experienced few side effects once I adjusted to the higher dosage. I occasionally get night sweats, but found that once the temperature in the bedroom was adjusted I'm a lot more comfortable.

As for the syringes, I take three out at the beginning of my week, usually first thing in the morning. That way they're sufficiently warmed up. Injecting with cold liquid can be extremely painful!
User avatar
Froggie
Family Elder
 
Posts: 113
Joined: Thu Apr 15, 2010 3:00 pm
Location: Ohio

Re: Side effects question....

Postby NHE » Tue Dec 20, 2011 2:48 am

Froggie wrote:As for the syringes, I take three out at the beginning of my week, usually first thing in the morning. That way they're sufficiently warmed up. Injecting with cold liquid can be extremely painful!


While Rebif is good for up to 30 days at room temp if stored away from heat and light (according to the Rebif medication guide), the syringes have such a small volume of liquid that they will likely warm up within an hour or less.


NHE
User avatar
NHE
Volunteer Moderator
 
Posts: 3320
Joined: Sat Nov 20, 2004 4:00 pm

Re: Side effects question....

Postby MSBOB » Tue Dec 20, 2011 7:19 am

NHE wrote:
Froggie wrote:As for the syringes, I take three out at the beginning of my week, usually first thing in the morning. That way they're sufficiently warmed up. Injecting with cold liquid can be extremely painful!


While Rebif is good for up to 30 days at room temp if stored away from heat and light (according to the Rebif medication guide), the syringes have such a small volume of liquid that they will likely warm up within an hour or less.


NHE

Totally agree. I can leave it out for a week, but if I inject at room temp, it hurts pretty bad. I warm it up right out of the fridge in my hand. It doesn't take long at all. The shots still hurt a little, but the difference is huge.
User avatar
MSBOB
Family Elder
 
Posts: 123
Joined: Sat Mar 05, 2011 4:00 pm

Re: Side effects question....

Postby Froggie » Tue Dec 20, 2011 10:12 pm

Bubba,
Mea Culpa with addressing the wrong person with my last response! That's what I get for staying up past my bedtime...

I have found doing the injections manually has eliminated most of the pain that was caused with the Rebiject. My husband has been doing them for me and they're usually over before I know it. The only times I've had pain with the manual injections is from hitting a capillary bed. I about smacked the ceiling! I have a lot of surface veins that make some areas impossible to use. I also exhale through my mouth during the injection, which seems to help. I can't recall who on this site suggested that, but it works.
User avatar
Froggie
Family Elder
 
Posts: 113
Joined: Thu Apr 15, 2010 3:00 pm
Location: Ohio

Re: Side effects question....

Postby MSBOB » Tue Dec 20, 2011 10:42 pm

When I say the injection hurts, I mean that sometimes it hurts for days. Injection site rotation is a pain. I know that I have to rotate but the default tends to be the available spot that doesn't feel funny and isn't red. I do find ibuprofen helpful. I am a big fan of modern medicine. I am also a big fan of the next big thing that doesn't require repeated injections. I chose rebif because I didn't want daily shots. Psychologically, the moment is always coming up for a shot, but a daily shot seems like it would be easier to get accustomed to. Still, I plan to stay on something. Safety is key.
User avatar
MSBOB
Family Elder
 
Posts: 123
Joined: Sat Mar 05, 2011 4:00 pm

Re: Side effects question....

Postby Froggie » Wed Dec 21, 2011 9:42 pm

Have you talked to your neuro about the injection site pain? You may be having some sort of allergic reaction to the drug. I only say that because I had terrible hives at the injection site while I was on Copaxone. Aside from me being a non-optimal responder to it, the daily shots plus the severe itching and pain didn't help matters. Since on Rebif, I've had fewer problems. I've finally figured out which areas are good and which ones to avoid. I'm pretty anal about rotating sites and keeping the same injection schedule. It helps me monitor any negative reactions I may have.
User avatar
Froggie
Family Elder
 
Posts: 113
Joined: Thu Apr 15, 2010 3:00 pm
Location: Ohio

Re: Side effects question....

Postby MSBOB » Thu Dec 22, 2011 12:14 am

Froggie wrote:Have you talked to your neuro about the injection site pain? You may be having some sort of allergic reaction to the drug. I only say that because I had terrible hives at the injection site while I was on Copaxone. Aside from me being a non-optimal responder to it, the daily shots plus the severe itching and pain didn't help matters. Since on Rebif, I've had fewer problems. I've finally figured out which areas are good and which ones to avoid. I'm pretty anal about rotating sites and keeping the same injection schedule. It helps me monitor any negative reactions I may have.


Good points. I hadn't thought about the allergy stuff. I guess I just assumed that the shots are just that way. Everyone from my neuro to lifelines downplay what I am saying. I don't blame them, because many people quit without a fair try. I got a lifetime to try things, and next will probably be capaxone.
User avatar
MSBOB
Family Elder
 
Posts: 123
Joined: Sat Mar 05, 2011 4:00 pm

Re: Side effects question....

Postby Maledicte » Thu Dec 22, 2011 10:37 am

Froggie wrote:Maledicte,

Sorry to learn of your bad reaction. It's possible that your body is taking awhile to adjust to the upped dosage. I know when I started on the 44mcg I experienced flu-like symptoms in full force. I do my injections at night and dealt with intense chills and feeling feverish. I felt exhausted and achy as well the next day. Do you take Ibuprofen at all? I take 400-600 mg about 1/2 hour before my injection which helps a lot. I've been on Rebif for almost two years now and have experienced few side effects once I adjusted to the higher dosage. I occasionally get night sweats, but found that once the temperature in the bedroom was adjusted I'm a lot more comfortable.

As for the syringes, I take three out at the beginning of my week, usually first thing in the morning. That way they're sufficiently warmed up. Injecting with cold liquid can be extremely painful!



I take them out on Monday morning and save leg for friday, but man that hurts like he** when I inject, and feels like a bee sting for about 5 mins after. My rebif nurse suggested an ice pack after injection, I usually just cuss up a storm and eventually it goes away. She said its most painful area for most ppl.

*shrug* I am just thankful that the severe shakes are dissipating and I can see again. (my eyes are different strengths and I was having terrible vision until rebif. I am not a fan of pfzer after lyrica but rebif seems to help a ton
http://www.etsy.com/shop/Maledictesjewels
Maledicte
Family Member
 
Posts: 51
Joined: Sat Dec 17, 2011 6:38 pm
Location: NW

Next

Return to Rebif

 


  • Related topics
    Replies
    Views
    Last post

Who is online

Users browsing this forum: No registered users


Contact us | Terms of Service