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Stopped taking Rebif

PostPosted: Mon Dec 27, 2010 3:35 am
by simonek
Hi all,

I was diagnosed in August this year.

The very day I was diagnosed, I was told about George's book (by another person with MS) and the lifestyle changes I could adopt to hopefully halt the progression MS.

During the first week of September, the MS nurse came around to train me on Rebif. I didn't think at the time, well not at all actually. But I had my script filled by the pharmacy, and they gave me the wrong cartridges. The nurse had to head off and come back a week later when the pharmacy got it right. Then I started on Rebif.

What a horrible drug! The side effects were just plain awful. But everyone encouraged me to persist, so I did.

So it took me a number of weeks to accept giving up dairy, meat and the like. But I started the lifestyle changes in mid-October. I've slipped a couple of times but have felt great for a couple of months now.

I was finding it extremely hard to concentrate, meditate and even do my job when taking Rebif. So I spoke to my neurologist recently who said, that seeing as I was doing amazingly well (note that I have had no symptoms, fatigue or heat stress for a couple of months now), he thought I would get just enough protection from the 20% dose. And because I travel at least 4 times a month on business, he thought I would be ok to leave the Rebif behind. So I changed my dose about 3 weeks ago, and the headaches and side effects were a little more manageable. But I still noticed that the day after the injection I was feeling anxious, especially during my daily meditation.

So I decided to listen to my body and about a week and a half ago and completely stopped taking it. Now I feel great about it, stress free, calm, meditation is a breeze now. But I have this little niggle on my shoulder asking me if I'm really doing the right thing? I think back to the pharmacy giving me the wrong cartridges back in September, and I'm thinking that it was a sign, to think about all options available to me.

I suppose noone else out there can say for sure whether what I'm doing is right. But I'm interested to know, how many of you out there are following the diet, and have opted out of the drug program?

Thanks,
Simone

Re: Stopped taking Rebif

PostPosted: Mon Dec 27, 2010 8:04 am
by koreman
I hated Rebif. It depressed me. I felt that to persist with it would lead to my early demise. Once I even bent the needle when jabbing my thigh. That hurt.. I recall when a lady who served me in a chemist shop complained when she saw the cost of it. She was playing the victim taxpayer. All this was about 3 years ago. I have the sort of MS that slowly grinds you down over time even though I'm on the diet. However I do feel that eating right has slowed it down. Hot, humid weather is no friend of mine as nowadays it cripples me until I can cool down. I've lost count of the number of times that I have kicked my little toe. In all this I manage to stay happy enough. The trick seems to be to have happy genes and don't dwell on it too much.

Re: Stopped taking Rebif

PostPosted: Mon Dec 27, 2010 6:55 pm
by Postiveattitude
Simone,

I was diagnosed may -second relapse -and was quickly put on rebif. I hated it, i just felt so anxious and hated the site reactions.

I thought long and hard about stopping as there was real fear that I was gambling with my health. I got some great support from this site and a girl I know who has had MS for years and has never taken medication. Took it for 2 months and stopped - For me it was the best decision, vitamin d I feel is streets ahead of rebif. Been on the diet for 7 months. Still slowly getting over my relapse, eyesight and balance could be better but improving each week. Feel frustrated that i am having to endure mild disability -before relapse was very active - but realise that I am healing and it will take a little time. Really into mindfulness mediation - it has changed my life - still battling with he monkey mind! Ian Gawler and Paul Bedsons recent book is excellent.

Re: Stopped taking Rebif

PostPosted: Tue Dec 28, 2010 8:03 am
by Rebecca Hoover
It is always interesting for me to see others who are afraid to stop taking an MS drug. For me, taking one of these drugs is what is scary. I was diagnosed in 1991 and have never taken any drugs for MS -- not even steroids.

Despite that, I am still doing fine at age 61. When I see others who do take drugs, I see folks who are not doing nearly as well as I and others who have never taken drugs are doing. All in all, this convinces me that drugs offer no advantage and may even be harmful. Increasingly, the reseach supports my view.

Re: Stopped taking Rebif

PostPosted: Tue Dec 28, 2010 9:45 pm
by catriona
Beta interferon seems to be effective for some people, not for others, depending on which type of immune response (Th1 or Th2) the person has - they really need to get a test developed. I think, as with everything, you try out different ways of coping with MS and do whatever works for you.

Re: Stopped taking Rebif

PostPosted: Wed Dec 29, 2010 4:03 am
by mmb
I wanted to build on Rebecca's response, though I am still on the drug. I was diagnosed this August, and started on Rebif in October. Began diet modification almost immediately in August, as well as physical therapy, yoga and other changes, but wanted to give myself the "best possible chance," so I went with the medication that was recommended by the neurologist, as well. I've been lucky thus far with only mild side-effects, but I worry now about possible harm the medicine will do (to my thyroid, long-term changes to my system, etc.) I have been very tired and sometimes find it difficult to focus at work, but it's not clear whether that's from the medicine, the disease, or something else. I'm hoping to go off the interferon, but for now, I guess I'm trying both approaches. Just wanted to share that anxiety, worries and questions may remain when one chooses to stay on the drug.

Re: Stopped taking Rebif

PostPosted: Wed Dec 29, 2010 4:17 am
by George
Interesting thread. Don't forget though, that stopping the drug is not the only option. Changing drugs is an alternative if you feel you need to stay on a drug, and there are drugs that do not cause any of the side effects of the interferons, eg glatiramer.

Be well

George

Re: Stopped taking Rebif

PostPosted: Sun Jan 02, 2011 9:27 am
by drjo
I have been on Rebif for four months with no major side effects to speak of. Today, I had an allergic reaction of some sort - involving full body flushing and elevated heart rate and headache - the like of which I've never had before. Don't know yet whether it was due to the Rebif or something else (but we can't think of any food I've consumed that would account for it). Suffice to say, I'm halting my Rebif injections until I get to talk to my neuro!

Re: Stopped taking Rebif

PostPosted: Thu Nov 08, 2012 8:18 pm
by Suvira
Hi my name is saeed im from lebanon I was diagnosed with MS. since 2010 but i was suffering from 2007 and the dr. didnt discover because there was no clear attack the illness started very slow from my left leg then to my left hand and now im feeling that its moving to the right side i cant walk alone more than 20 meters but im struggling because i don want the rebif anymore because the time they discover that im into MS. i wasn't like i am today i was feeling that there's something wrong on my left side but i thought that mat be its because of playing soccer too much or maybe because of the break dance bcuz i was a pro. break dancer when the dr. told ,me that i have MS after the MRI he told me that i have MS and i started to take rebif and its the result of my condition now so i quit the rebif and now im starting the diet even though im out of meat and chicken and dairy products 2 years ago but i was a smoker now i quit i do meditation and exercises 2 weeks ago i had an appointment with my neurologist and he said that i have progressive MS and not RRMS. as the expect and they want me to start a chemotherapy (Ndoxen) but i refused some days i really feel depressed because im 24 years old and im still feeling the deteriorating so whats next but meditation and faith helps me a lot to get rid of some negativity i hope i this recovery program shows an improvement or at least can stop the progression...

warm regards for you all

Re: Stopped taking Rebif

PostPosted: Fri Nov 09, 2012 9:59 am
by Susan Doumbos
Hello Saeed,

It's good that you have stopped smoking. And that you are not eating meat and dairy, and that you're meditating.

How is your vitamin D level?

One of our OMS Forum members, Lozza, was initially diagnosed with primary progressive MS, but after some time on the OMS program he has had his diagnosis reviewed to relapsing remitting MS. There is plenty of hope for you, too!

Eat lots of vegetables, get your vitamin D level up above 150 and keep it there. Remember that fish oil is important, too.

I hope you are following all aspects of the OMS program, and that we will see you posting in a year or so about how much better you are. I know you will be.