Emotionally Dealing with Rebif

[NiftyBunny]

Hi,
So I have been on the Rebif for about 4 months now... side effect wise it seems to be going well. Usually I get a headache the next morning which goes away with a couple Advil, and occassionally a slight fever in the afternoon. Definitely workable, not as unpleasant as to be honest I was expecting when I started the Rebif (though getting onto it was HELL).

My problem I'd like to address here is the emotional side. I won't call it "side effects" because I don't think it is the drug itself causing this, just the fact that I HATE doing the injection. Every time I have to do an injection as soon as I realise that I have to do it that night, I am depressed all day long. I am not usually big on the self pity, but I can't help but wish every injection day that my life were different and I didn't have to do this. Lets face it, it SUCKS.

My question for you guys is this: Have/Do you feel the same way? Was there anything you found to make you dread it less? Did you get more used to it as time went on, didn't really dread it much after time? Just looking to talk a bit about this. I'm not happy that this is my life now, and I'm trying anything I can to help myself to accept it. I know time is needed for that, but at least I'm trying.

[CuriousRobot]

I lacked the courage to request for the existing intra-muscular injections for MS. I'm bumping your thread, maybe someone else will see it, hopefully.

When I have feelings of anxiety, I try not to let this leave my mind:

"If you can solve your problem, then what is the need of worrying? If you cannot solve it, then what is the use of worrying?"
--Shantideva

[carolsue]

The injection routine and the freshness of the diagnosis used to consume a lot of my psychic energy, too. Instead of getting depressed, though, I was full of determination that by golly I was going to overcome this adversity. Each injection was a small challenge I faced and succeeded over. I still hate the injections, which I find quite painful. But after 7+ years, I don't think about them until it's time to do them. I regard it as a chore that I have to fit into my day. Sometimes I get so busy that I nearly forget to do them.

I will admit that a few months ago I got really tired of the painful injections. So I decided to give myself a little break and instead of doing them 3 times a week, I started doing them every 3rd day. But soon after, I noticed a new numbness on my shin that I hadn't had before so I went back to the 3 times a week regime.

I've been fortunate that my MS hasn't been too active, and hasn't changed my life very much. Any time the self pity has started to creep in, I've been able to compare my situation to others with MS or other diseases and conclude that I have nothing to complain about.

Not sure that helps, but it's all I got. Best to you,
Carolsue

[KarenT]

I was diagnosed at the end of February with MS and I have been on Rebif since April and know where you are coming from. Do you use the Rebiject? I guess I have overcome the dread of the shots because I want to believe that they are helping me and I am determined to not let MS kick my behind. I consider Rebif my partner in beating this monster that is trying to take over my life. Besides the Rebif injections I also have to give myself a B12 injection every 4 weeks. I dread that way more because it has to be in the muscle.

[Froggie]

I'm going on almost three years since my diagnosis and have been on Rebif for almost two years. My biggest anxiety was injecting in my thighs, as they were always problematic. That took a lot of mental energy trying to psych myself up for it. I was using the Rebiject at first, but found it caused a lot of pain and bruising. Since my husband took over doing my injections, I've had few problems. And this is coming from someone who hates needles! The way I look at it is it's only three days a week compared to everyday when I was on Copaxone. While I'm still not thrilled with having to do injections, the drug is helping me and I too see it as a weapon to fight this disease.

[Bubba]

been on Rebif for almost two years. My biggest anxiety was injecting in my thighs, as they were always problematic. That took a lot of mental energy trying to psych myself up for it.

Thighs, Belly, didn't matter for me. It is not normal to stick yourself with a needle... I wasn't depressed about it nearly as much as I was self cathing. That was devistating for me. Here I am three years later, and niether one are a problem at all. I don't even think about it, I just do it. So I guess the answer in my case was that I just got used to it. BTW, throw the rebiject away. It is much less painful to self inject.

[gabriellelm]

I was diagnosed three days after Christmas 2011, so everything is still quite fresh for me. I dread the Rebif (44 mcg) shots not so much because they are painful but because I almost always experience an anxiety attack following them, sometimes waking up in the middle of the night in a panic. After reading a few of the other posts on this topic, I know I'm not alone, but it's still quite frustrating. I'm not much of a "joiner", thus have no fellow MSers locally to compare/contrast with. I'm really hoping this message board will help

[NHE]

Hi gabriellelm,
Welcome to ThisIsMS. I believe that you will find a supportive community here.


NHE

[fishee2]

I was diagnosed three days after Christmas 2011, so everything is still quite fresh for me. I dread the Rebif (44 mcg) shots not so much because they are painful but because I almost always experience an anxiety attack following them, sometimes waking up in the middle of the night in a panic. After reading a few of the other posts on this topic, I know I'm not alone, but it's still quite frustrating. I'm not much of a "joiner", thus have no fellow MSers locally to compare/contrast with. I'm really hoping this message board will help

Hey there - I have been taking rebif for years now. I will say that you will get better at injecting yourself, it will become a lot less painful for you. At least that is what happened with me. Everyone once in awhile I have one that hurts a little but the pain goes away almost immediately.

I have not experienced anxiety like you have. I would hope with time the anxiety will settle as you become more familiar with the drug. I am sure your Dr would get you some medication to help with that if needed. I was diagnosed young at 19, so my mindset was more of I'll do anything it takes. Honestly I can say that since I've been on rebif I have not had another attack. Hopefully you have the same luck.

I hope my words help ease your mind at least a little!

[gabriellelm]

The injections really don't bother me at all, and I think I'm actually getting used to the anxiety, because I know why it is happening. I have spoken to my neuro and he offered me another med to combat the anxiety, but I'm kind of hoping it'll go away once I've been on the Rebif a bit longer.

[azsander]

I would like to know how many of you think you are getting benifitts from Rebif. Are negitive side effects worth actual perceived improvement. Or is this a statistical experiment with no real constants or ways of crediting natural remission to truely compare Rebif to in making a truthfull evaluation of these drugs. Like many of you I was pushed into accepting to take the injections. But after 7 months of 3x aweek, in my mind I was sure of only a few things: I felt worse than I ever had in entire life from emotional depression, flu, headache, fatigue aching kidneys from tylono injection cite reactions and the unknown toxification of my body. I think double blind studies can't realisicly factor all the unknows to make atrue unbiased evaluation. Even at that their statistics seem to show a small marginial population showing improvements. So I Quit l for me diet exercise [as I can} supplements within rational boundaries are what I choose for my boby, which is my temple. This is my personal choice for me against my nueros advice! This is my 1st post after reading for 1year. Ithink I have something to say...I also drink Chinese medicine and get a special kind of accupunture, gold needles incerted on nerve lines to reconnect me. This is slow and a bit costly but at certain junctions my disability, dragging leg amd only walking short distaces loss of muscle tissuie in right leg are all improving. I feel very lucky living in Korea where following a healthy diet is a pleasure and having my sister in law here a Chinese/ herbalist/accupunturist. Nice to meet you and finially say Hi...Peace... God's help in making your choices Azsander

[Markd]

Well, I don't know how long gold needles will last but I have been on Rebif for about 7 years. What can I say, I still don't enjoy the shots. However, I have not had symptoms of any note in that time. Haven't really noticed those bad fevers in about 6 years and life has been real reasonable to me so far.

What I used to do and still do occasionally (I hate to admit to this) is find some videos or meet with some long time sufferers just to remind me of what MS can do. Makes those shots and after effects seem like nothing. Also makes the contributions to MS organizations seem like nothing as well.

Stick with it, like my doctor said to me when I was first diagnosed, at least it not a brain tumor.

(My apologies if this response offended anyone)

[MSBOB]

I get the morning after headaches, sometimes insomnia, and occasional muscle aches from the rebif. Best thing has been to make sure I am drinking enough water. It really does make a difference. I have been on rebif for over one year. I have had MS symptoms for about 10 years. I admit I don't feel a whole lot bett. I fear MS, and I will do what has the most science based approach accepted by mainstream doctors who have paid their dues.

Depression is the most difficult thing I deal with, but rebif has not made it any worse. I am glad.

Feel free to write about whatever you are feeling. Best of luck.

[azsander]

Markd...I think I have been experiancing mild symtoms from high school [ light vertigo sometimes} My first gold needle treatment was about 1996 for 2 commpressed discs whiuch latter herniated. After treatment I went on living normally with no mainsream medical intervention and felt good. 5 years latter I began to notice my right leg loosig muscle mass.. I Still wasn't too worried still pretty normal. Then in 2011 Mar. I had an attack my 1st, ended up in thr hospital for 2 months as I couldn't walk! Did solumedrol sreriods maybe three or four times.,..hated it still couldn't walk.about 5th week in hospital started on rebiff 22 went up to 44 I was depressed before rebif but unbarably after but I thought I was following the best medical advice...and continued 3 x a week through physical therapy and could finially make it the bathroom from the wheelchair....So after 7 months countless atianxity anti depression & millions of tylanol My wife & made the decided to stop rebif for the gold treatment with herb medicine for energy for 7 months all i said was I'm so tired! well I don't say it now! I work 6 days a week as a teacher / tutor 5 - 8 hours a day. This treatment is not well known and not redily available and should only be done by somene with years of experiance. So the neouro in looking at mt MRI'S & x rays ...he sees the gold needles on the x rays around L 3 & L4 they had fused together and the discs were completely gone. But since the treatments in 1996 I had been living pain free....Now 2011 Thr Dr was surprised and asked what that was in my body. And said a surgeon could not have done a better job repairing that problem. To answer your ? the needles can last 7 years my Accupuntirist said but in my experiance they are remaining effective longer. I continue to take about 100 at a time 3 or 4 times a month I'm up to about 3000 or so. My first post was a rant against rebif ...I'm sorry but I had Just argued it with my neouro. And if it is working for you God Bless..I should chane my posting to regimes...I'm not selling anything... This is my unique story...and I'll post to keep you up on how its going...I'm not scared anymore.... Peace and Love to All azsander
Now I continue to improve greater strength longer mobility some muscle mass retuning to bad right leg.

[MSBOB]

Unless one feels that acupuncture relieved a side effect of rebif, it should probably be discussed elsewhere.