Side Effects Awful
 

I was doing pretty good on the lowere dose of Rebif.

Last night I gave myself the highest dose. I woke up at 3am
and I had a fever and the body pain was terrible.

It also seemed to aggrivate the Fibro more and there was not one
spot in me that was not hurting. I even felt like my teeth were aching.

Took the meds to try and counter effect the symptoms. It helped a
little. All day today I was in bed. When I had the flu I didn't feel this bad.
Also felt nausea and did not want to eat anything. All I wanted was
something to drink.

I hate it, hate it. My anxiety is on full speed also.

Friday night I have to give myself another shot. I am now so scared
how I am going to feel. This is the dose that I am to stay on from now on.

When I was slowly graduating upward with the first doses, I didn't feel
to bad, but now jumped from 22mg to 44mg.

Has anyone else had a problem like this? If this is the way I am going
to feel each time I take a shot, I don't know if I will make it.

Thanks for letting me rant. Telling you about my feelings at least I
know that you really understand.

My children are wonderful about all this, even though they have seen
me go through a lot in all these years, you have to personally go through
the symptoms to understand.


Jappy :(

Wow, Jappy, I am so so sorry, that you are having this horrible reaction to Rebif. Other people will say...hang in there and wait it out, but not me....I would stop the dang stuff right now....But that's me.

Feel Better...with Love, Sally:hug:

Stay on the half dose and let your doctor know! The same thing happened to me. I had the option of staying on it at half dose. I believe that trials have shown half dose to be almost as effective as full dose.

Feel better soon. :hug:

I am sorry to hear about the bad side effects. My Dr. wants me to start on one of the Injectibles. I have been very lucky and have not had a flare for 3 years. He wanted be to do the injectibles then and I said I wanted to wait and manage without so I only did a 5 day iv steroids course and have done pretty well until now and have new symptoms and will be doing a 3 day course of iv steroids starting monday. He talked to me about the injectibles again and I still am afraid of the side effects. I react to everything. I hope things get better for you soon.
Barbara

Awwww Jappy, I'm so sorry the Rebif is doing a number on you -- the wrong number. Those side effects sound like the ones I experienced while trying to take Betaseron. Avonex gave me fibromyalgia (my neuro mentioned another MS patient of his had the same thing happen) and by that time it was too late for Copaxone, soooooo.......it's LDN for me with none of that stuff!!! Have you ever tried or considered it??

All the best whichever direction you choose...:)

I got the same side effects from Betaseron. I believe all the Interferons have the same effects. Won't ever inject that stuff into my body again. Like Judy and Sally, it's LDN now and none of the nasty side effects.

There are folks that need to titrate up more slowly than others. Its not written in stone that you must start the full dose now. give your body more time to adjust. Make sure to call your md and ask. Call the rebif nurse, and tell them your having this trouble.

They want to keep you on the meds, and if your miserable, its more than likely that you wont. They will back up and keep you comfortable.

Hang in there.

I'm so sorry jappy :(. I had the same problem with Avonex. I felt horrible the entire 9 weeks I was on it. I was working then. I could barely function.

I agree with Wiz. Talk to your doc and stick with the half dose. I dreaded shot day. Sometimes it would take me half an hour with the needle hovering over my thigh before I could inject. I felt like I was poisoning myself.

Feel better soon :hug:.

Yikes girl! I agree w/ asking to go back to the lower dose so you get use to it. You could always waste some and make your own 22s. Try to hang in there!

Sorry to hear the side effects are bad for ya. :hug: Totally agree with asking doc about trying the half dose for awhile.

I know I learned the hard way that I have to take Aleve as a premedication. The one time I didn't - a lot of pain and major chills.

Hope things work out for ya. :hug::hug:

How long if any of you stayed on the meds before you decided to
stop taking them.

I started June3rd even though it was lower doses I can't notice anything
good that is different.

Waiting to hear from Dr. or his NP . I am starting to feel better now
then I felt all day.

This is driving me crazy.


Jappy :confused:

Jappy, sorry you are feeling so bad...I took Avonex 3 and 1/2 years before I said ENOUGH! Tried copaxone ans was extremely allergic to that. Now I choose not to pump my body with anything that makes me that sick! Time and age are destroying my body fast enough, don't need to speed up the process by injecting myself with meds that MAY or MAY NOT be helping with this MonSter. JMHO

Sorry about the side effects. Ask the doc about going back down, you may need more time. Wiz had a good point about the half dose too. Jim stayed on every shot for some time, I can't remember the exact years but went full circle back to Beta and all is good. I started to type out the years but they weren't matching. lol

I stayed on Avonex for 7 months, so I gave it the old college try, only because everyone kept telling me the side effects would eventially go away, but they never did..:(

You do what you think is reasonable and best for you and your body. Your MS is not my MS or anyone else's..:hug:

Well, crap, Jappy, that's not what we were hoping for at all! Dang interferons! I hate 'em too.

I had the devil of a time on Beta and after 3 years of misery, I just quit it. I waited 6 months and started on Copax and after 6 years of that one, I ended my hate affair with injections for good.

Like the others said, to me, the worst part was, and continues to be, that I will never know whether it helped, hindered, or did nothing but aggravate me!

I agree with the idea of going back to half and talking to your doc about it. No one needs extra misery added to this nightmare disease. :hug:

Hi, Totally with you on this one.
I've been on Beta since april 15 and I'm looking forward to that magic 3 month date when it is said that the side effects could be over. I started on the full dose and never went back. I do my jab just before bed, I take two brufens and one codeine, put the leccy blanket on and go sleep through it. If I wake in the middle of it or forget the tablets, it's absolute hell on earth. It's miserable, shivery, painful awful flu. I hate it with a passion.
But I'm sticking with it. I can't not try.

hope you get through it soon.

I was on Beta, and the side effects were pretty mild, but when they tested my liver functions, I set a clinic record for increase in enzymes in a 3 month period. I was immediatly yanked off of it. I didnt even realize how badly I felt until I wasnt on the stuff anymore, and started to get my old pep back. At that point I was happy to have been forced to stop. I was pushed on copaxone.

I have been wanting to lay down my needle for a long time now, but havent had to courage. I think I am waiting to be forced off of it. Its hard to quit. Even if you dont think its helping, its hard to quit.

Copaxone has been pretty easy. I have had a few issues, but no biggie.

I hope you feel better quick. :hug:

Hi Jappy,
I was on Avonex for one year. My MS Neuro pulled me off of it. My body could not tolerate it. Also, like Dejibo, my liver enzymes kept rising to too high a level. Rebif is twice the dosage of Avonex.

History part:
I had started on a smaller dosage 1/2, and got the flu-like sx real bad. Used many pre-meds just to get to work and back. I did the shot on Friday so I suffered all weekend.

He wanted me on meds at the time, due to 4 relapses a years He had me go to the full dosage 22 mgs (which is half Rebif btw) and I had the flu-like sx from heck, fever, chills, pain for 4 or 5 days. He even tried one 10 mg tablet of prednisone the day before and the day after the shot to try to stop the flu and fevers. No site reactions though.

The interferons are Chemo drugs. Like most of the DMD's they are immodulators. Also my finger nails split in half up the middle :confused: and head hair was lost, but not badly.

I managed to stick it out a year on full dosage, when he finally switched me to Copaxone because I really needed my liver. That organ is vital to our existence.

I did "C" for 3 1/2 years. At first just the skin reactions, minor at the time. After the Avonex needle "C" was a piece of cake. :) Then I couldn't take that anymore due to it letting infections take over. So I stopped all injections of anything, because I still had the relapses too. I did IVSM when needed. Oral steroids no longer helped my either.:(

Then again, after one year, I tried with a new Neuro to go back on the "C". I had severe site reactions, infections, and possibly allergic to the change in liquid filler in the "C", as the SS Pharma told me.

This is just my story. We all are unique in how our bodies process drugs, and how our bodies react to them,-- our MS differs also. Some do well on the CRAB's, others do not.

Jappy, maybe lower the dosage as others have said, and give it some time. It is up to you and your doctor to decide. An Allergist-Immunologist can sometimes be added to help you get even 1/100 of the drug, like they wanted me to do, under a controlled setting with the doctor present.

That was okay to do with the interferons, they said, but the MS doctor said "C" doesn't work that way. So nixed that idea.

Let us know how things are going with your shots and what the Neuro says. Many newbies need to know these facts. When I started Avonex I didn't have a clue what flu-like symptoms really meant.

It was sort of downplayed to me because some PWMS have no problems at all, and he didn't want to scare me off.

Thanks everyone for your info on how the meds worked for you.

I know that we are all different and that it will hit us in different ways.

I did take my 2nd 44mg shot last night. I am not feeling well. This is
the first time I have been on the computer today.

I can't get a hold of the dr. until monday. The weekend!!!! This is not
a matter of life and death as they say.

Monday night would be when I am due for the 3rd shot. I am not going
to take anymore until I talk to him.

I seem to be spending all my time in bed sleeping and taking pain pills
and ibuprofen for fever. This is just crazy. I feel worse now then I have
been feeling.

When I first mentioned to him LDN I thought he was going to go threw
the roof. Out loud he kept saying "It is not approved for ms and has not
been proven to help in anyway. I just sat there and looked at him, saying
to myself "O" he is one of those drs. that do not want to be told how to
take care of the patient. Don't get me wrong, he comes highly recommended
by so many other drs. I had him checked out before I went to see him.

Will let you know what happens.

Jappy :grouphug:

(((((((Jappy))))))):circlelove: Feel better soon.

What she said. :( :hug:

Wow! Hope you are getting some relief!

I would have to dig out my old Rebif charts and see what they say, cause I don't remember anything like that.

You probably are much to sweet and delicate to go full force with the 44!

(Does that earn a pie when you feel better by the way?)

The alarm went off at 7am I had it set to get me up for church.

Well I never made it to church. Went back to sleep and woke up
3hrs. later.

I am feeling a little better now. The effects are wearing off. Now
tomorrow I am supposed to take another shot in the evening.

After talking (i hope) to the dr. I am going to decide if I should
continue with the shots.

My family is saying ((((noooo))) don't take them. They feel that my
life seems to be worse then when I just had the ms alone to worry about.

Well will see what happens tomorrow.

Jappy :(

My Family did the same thing when I was on Avonex (said nooooo)

DD, since she has been DXed with MS, has refused all DMDs, because she saw what Avonex did to me. She told her Neuro...Nooooooooo, and is also on LDN. She no longer sees a Neuro and neither do I..;)

Whick dr. do you get your LDN from. Like I said my neuro went
balistic when I mentioned LDN to him.

Jappy

I have received my script from a Doc in PA, for the last 5 years. My Neuro wouldn't script it either..:mad: DD gets hers from her PCP.

I think my PCP would script it but I just stay with Dr S, as many others do. He's an MD, but also an alternative Meds Doc.

I use the same doctor as Sally does, Jappy. He's an angel.....really.

My Neuro goes ballistic, too. Guess they're thinking of their bottom line when we ask for a med that doesn't generate any revenue for big pharma OR them! :rolleyes:

Hiya Jappy!
Just stopped by to :hug: you and see if you posted on how the next shot went or if you talked to the doc...
Update when you can! :)