Needles No More

Injections, Injectables, MS, multiple sclerosis drugs, Betaserone,

I did it – I quit it.  The thing I’ve been dreaming about doing since I started “shooting up.”  I quit shooting up.  I’ve been injecting myself with Betaserone every other night for 5 years.  It apparently served me well as my MS hasn’t progressed.  I don’t have any new lesions.  In fact, I have fewer (I did that with guided imagery, but more on that in another post).  So why quit?  And why now?  Great questions – and I don’t know.

Seriously.  I’ve wanted to stop the injections since I started them.  Who enjoys shots?  NO ONE.  Particularly if you have to give it to yourself and there’s no light at the end of the tunnel in terms of when it will end.  But – I did it – for 5 years.  I even referred to it as my “liquid gold.”  I had fantasies of going off of it, but I was so scared that something horrible, devastating and irreversible would happen if I did.

I shot up at night to try to sleep through as many of the side affects as possible.  Occasionally, particularly in the beginning, I’d wake up shaking uncontrollably in the middle of the night after a shot.  I’d be frozen.  My husband would lay on me to try to stretch my body out straight because I’d be in such a tight ball my muscles would start cramping.

Most “days-after” I felt like shit.  Those “flu-like symptoms” they talk about?  Yeah, those.  Body aches, pains, chills, cog fog, fatigue.  Not good.  Additionally, the “shot spots” were very painful.  Not always.  Not every spot.  Not every time.  But often enough that I had begun to feel like a pincushion.  There was really only 1 position I could lay at night to be somewhat comfortable.  If I rolled over, the “shot spots” on my arms would wake me up in pain.  I had to give up shooting up in my legs last year because the knots were painful and longlasting.  The same had become true recently of my arms.  I was seriously getting down to the last few spots left.

I always envisioned the day that my doctor would tell me I didn’t have to do those damn shots anymore.  In my mind it was a “red-letter day.”  I thought there would be a big buildup, a count down until the last shot, maybe even a party to celebrate it.  I went in to see my neurologist, told him I thought I was done and he said “okay.”  What?  Excuse me?  I was counting on him to talk me out of it.  Now I had a really big decision to make.  To stop or not to stop.  Just exactly how risk tolerant am I?

Turns out, I’m less risk-averse than I ever thought.  And that fan-fare for my last shot?  It never happened.  There was really no premeditation to it.  I simply couldn’t imagine doing it one more time.  I shot up for the last time on December 27, 2012.  It was a retrospective decision.  When it came time to do it again on the 29th, I thought I’d skip a day.  The next day – nah, maybe just one more day without it.  Then the epiphany.  I’m done.

My husband was pleased that I had stopped.  He had seen the pain I had because of the medication.  I started these shots a week after I was diagnosed.  I didn’t know if my pain was simply because of the shots or if MS was kicking my ass too.  He’s relieved to see – at least thus far – I’m doing really well.  But – he couldn’t be a part of this decision.  He started to voice his opinion not too long ago but I stopped him.  “This has to be my decision,” I said.  “If this doesn’t go well, and I end up worse off because of it, you can’t feel guilty and I can’t look at you like a cause.  This has to be my decision – either way.”

So – the decision was made – at least for now.  I’ll never say never, but I’ll say I’ll probably not go back on this decision.  And, knock on wood, it’s going really well.  Unfortunately, I went gluten free and dairy free at the same time that I quit the medicine, so I don’t have a definitive answer on whether or not I feel better because I’m off of medication.  I’m going to reintroduce the gluten and the dairy separately to see if I have a reaction or not.  But I have no plans to reintroduce the shots.  It was a scary decision, but like most decisions, the toughest part was actually making the decision.  Once I did, I feel good about it.

Many of you have expressed your desire to make a break from the shots as well.  So – what are your thoughts?  Do you have fantasies of going off of the drugs – at least getting away from injectables?  Do you have a plan to do so?  Would you never even consider making a change in your pharmaceutical regimen?  Do you think people (like me) who do are taking silly chances?  I’d love to hear your viewpoints on this matter. Please, leave a comment underneath this post so we can all hear the varying opinions of this community that help each of us to weigh our options.

 

**UPDATE:  It’s been over a year now since I went off of the Betaserone shots.  I haven’t felt this good since before I was diagnosed.  I’m still staying away from dairy and gluten – but not religiously.  I’ve added more exercise and I’ve lowered my stress levels.  All of this seems to be doing me some good.  I feel great and my MRI shows I’m holding steady.  Can’t make a recommendation for anyone else – but it sure has been a great move for me.  FUMS!!

 

Special thanks to www.FreeDigitalPhotos.net for allowing us to use this cool picture of yucky needles!!

10 thoughts on “Needles No More”

  1. I stopped all pharmas october 2011. I never realized how much of what I was going through was side effects from the medicines. I feel better. My MRI’s show no change. I keep all my neuro appointments and keep her up to date. Best MS related decision ever!

  2. L am a person who has fought wath MS for years. I have been on Avonex which is a deep muscle shot taken once a week. I casn remember thinking the needle was going to come out the other side of my leg. I did that for about a year. Next came Betaseron for a couple of years. I am now on Tysabri. I have to go in once a month for infusion taking three hours. I know that there are risks but I’ll take quality life over quannity any time. Sometimes it likes to hide only to pop up with a vengence. Every one has to make their own call. The only thing I’ll say is yes I have MS but it don’t have me.

  3. I have been on therapy for 18+ years. I started on Betaseron (only one on the market), then switched to Avonex when it came out hoping a shot once a week would be easier on my body. I was wrong! The side effects were debilitating! I was a single mom with a two year old son, working full time. After beating myself up for months, I decided to stop my injections and just let my MS do what it was going to do. Sadly, I had a couple of bad exacerbations, so my doctor suggested I try Copaxone. Yes, a daily injection but without the flu-like side effects. Happy to say I’ve done we’ll on “my daily dose of hope” since 1999, but I too dream of the day I can “quit” shooting myself! Godspeed!

  4. Ultimately, this is your disease and your decision. I don’t mind taking my daily shot. I even do it manually everyday, it helps me feel more in control I think. Fortunately for me, I’m on Copaxone. It’s only been six months so I can’t speculate how I’ll feel in five years but I don’t experience the debilitating symptoms of some other injectables. I have, however, taken a mind over matter approach to the sometimes intense stinging that comes with the Copaxone. I’ve convinced myself that it doesn’t hurt and the pain, as well as the itching and redness, has significantly subsided. Having a positive mindset does help this disease and if stopping the injections keeps you positive, then have at it.

  5. Estizer A. Smith

    So much sounds familiar here. I too have been on a therapy for some 18 years. Started with Avonex and after my exacerbation’s seemed to no longer be “contained” I reluctantly switched to REBIF. Because my MS had become more unmanageable I also left my job at this point. These things lead to a depression. I stayed on the REBIF for about 7years without serious flare-ups but, then I quit.

    I came to blame my depression on my REBIF. About 2 years after I stopped the REBIF I had the longest, most severe relapse that I had ever had. AND my depression WORSENED. At that point my most trusted Neurologist explained to me why my REBIF was NOT the source of my depression;although I DID find it depressing to self inject 3 times a week. This knowledge along with the relapse prompted me to restart the REBIF.

    I completely changed the way I do my shots as well as how I think of them.I would rather take a pill, yes, but I’ll give them a few more years on the market first.

  6. I was on Copaxone for 8 years and the last 1 1/2 years I started taking it only sometimes because I hated it so much. I did not progress at all during the time I was on it and I was doing really well. Than I totally stopped taking it for almost a year. In that year I had 3 relapses and my MS progressed a lot. My first relaspse happened about 3 months or so after i totally stopped. Would it have happened if I had kept taking the shot? I don’t know. I will never know. But I couldn’t keep doing it. But since I stopped I progressed a lot and it scared me enough that I am now on Tysabri. I like Tysabri a lot better. But I have permanent symptoms now that my doctor says will never go away from when I was on nothing. I have had these symptoms for over a year now. I have been on Tysabri for about 9 months. I don’t want to scare you because I totally understand why you would stop. And copaxone doesn’t even have the horrible side effects of the betaserones… But honestly I will never stop being on one of the drugs again.

  7. Love your post! Went off shots 11 years ago after three year double blind study at USC for a vaccine. Became certified as holistic nutrition educator and certified life coach. Your blog is spot on! #AttitudeisEverything #TakethatMS

  8. I was on Betaseron for approximately 5 yrs. I also hated the injection site pain, the side effects and the feeling of never ending injections. I also went off my meds by simply taking a day off, then two, then a week, a month, etc. My exacerbations were minor and similar to when I was on the Betaseron. I never told my wife or doctor, I just couldn’t admit it. My wife began to notice I wasn’t taking the shot, but I didn’t admit it to my Dr until 3 yrs after I stopped. I was expecting him to guilt me back into compliance, in fact that is what I wanted. After admitting my non compliance and explaining that the shot made me feel terrible and I was concerned about the cumulative effects of life long injections, he surprised me. He said your concerns are valid and are questions someone in your shoes should ask. He didn’t endorse or condemn my decision. My only issue is my wife’s concern that MS will someday comeback and I won’t be protected. My symptoms have not progressed and my minor exacerbations occur at the same frequency as before (usually related to stress and cold viruses.). I think MS is a disease of great variety and what works for one person may not work for others. I am just so glad to read about someone who made the same decision as I did. It was very refreshing and liberating to read. FUMS!

  9. I was diagnosed in 1985 after my daughter was born. I had symptoms in 1983 after my son was born but didn’t do anything and they eventually went away. After my daughter I had optic neuritis and went to a Neuro and was eventually diagnosed with “Early MS”. From 1985 until 1993 I would average two exacerbations a year and be left with some “disability” every time. One time it was my bladder, the next time, my bowels, then I couldn’t pedal a bicycle, and on and on. In 1993 I started Betaseron as soon as it came on the market. I still do the injection every other night. May 2013 was twenty years of injections. Do I hate it? Yes. I will not stop it because it is working for me. My children are now 28 & 31 and I still drive my own car, walk with a walker and cook dinner every night. Every one has to find out what works for them. I only had the flu symptoms in the beginning so the doctor suggested I inject half the medicine for a month and then start with the full dose. It worked. I’m not messing with what works. My doctor suggested I stop it and try to new pill called Tecfidera. I’ve decided to stay with Betaseron

  10. Pingback: To Take Drugs or Not - That Is The Question - FUMS: Giving Multiple Sclerosis The Finger

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