Should i take Rebif?

A board to discuss the Multiple Sclerosis modifying drug Rebif

Should i take Rebif?

Postby Mrmr » Thu Jul 09, 2015 12:52 am

Hi All,
I've just registered and want to share my story and concerns.
I'm 38 old female married with 3 kids...I have been active working in the development field in the developing countries.
Feb 2015 i got my first attack and in the hospital they told me probably you have MS, i've visited more than 5 doctors to confirm and yes my MRI showed that i'm in a bad shape...lesions are everywhere!! still my symptoms are under control so far, the only thing is the weakness in my legs and unbalance walking.
My doctor told me not to wast more time and just start the Rebif!... it is scary for me i feel that this step will change my life and i will be officially MS patient. i'm very hesitant and want someone to tell me there is no need to take it. the side effects seems stronger than the MS itself.
what benefits for the Rebif? is it going to STOP the MS symptoms, considering that i dont have frequent attacks.
is it the right medicine for me?

I'm confused ... i would appreciate any help.

Thank you

Best,
Mrmr
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Re: Should i take Rebif?

Postby EricDrake » Thu Jul 09, 2015 3:01 am

Mrmr wrote:Hi All,
I've just registered and want to share my story and concerns.
I'm 38 old female married with 3 kids...I have been active working in the development field in the developing countries.
Feb 2015 i got my first attack and in the hospital they told me probably you have MS, i've visited more than 5 doctors to confirm and yes my MRI showed that i'm in a bad shape...lesions are everywhere!! still my symptoms are under control so far, the only thing is the weakness in my legs and unbalance walking.
My doctor told me not to wast more time and just start the Rebif!... it is scary for me i feel that this step will change my life and i will be officially MS patient. i'm very hesitant and want someone to tell me there is no need to take it. the side effects seems stronger than the MS itself.
what benefits for the Rebif? is it going to STOP the MS symptoms, considering that i dont have frequent attacks.
is it the right medicine for me?

I'm confused ... i would appreciate any help.

Thank you

Best,
Mrmr


Hi,

It is quite a hard choice to make. I am also choosing the medication right now and I decided next to Tecfidera which I want to start september. Some would say that it is unnecessary because when you reach SPMS it would help no longer so it does not matter in the long run, well I think it matters, first of all reaching SPMS could take 10-20 years (if you even advance to spms because some people remain rrms for their whole life.) and I think it matters how much relapse you have during this time, each relapse causes more and more damage to the nerves and I think it will even matter when you reach spms that how much dmg your nerves experienced before(maybe not but for me it makes a logical reason). But thats true that with these medications you take a risk because they have side effects, but most of the patients usually experience minor side effects or none at all. I am sure that I would try atleast one first line medication because atleast then I can say that I tried, you can find people even on these forums who got better with medications. I am sure that the side effects are not pleasent but compared to a relapse that might effect your motor nerves or optical nerves some stomach issue and a possible flu like symptom still sound better. If it is not working for you, you can still stop, thats my opinion of course and I think there will be others with opposite opinions.
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Re: Should i take Rebif?

Postby NHE » Thu Jul 09, 2015 4:41 am

Mrmr wrote:My doctor told me not to wast more time and just start the Rebif!... it is scary for me i feel that this step will change my life and i will be officially MS patient. i'm very hesitant and want someone to tell me there is no need to take it. the side effects seems stronger than the MS itself.
what benefits for the Rebif? is it going to STOP the MS symptoms, considering that i dont have frequent attacks.
is it the right medicine for me?


Rebif, interferon-B1a, will not affect your symptoms. The goal in using Rebif is to slow the the accumulation of lesions and hopefully slow the progression of the disease. Using Rebif you may experience significant side effects, or you may not. Some of these include depression, chills, fever, shakes, muscle aches and muscle spasms to name a few. I was on Avonex, another interferon, for 10 years and found that I could diminish the side effects with ibuprofen. However, I never found out if this impacts the efficacy of the drug. I suggest you learn as much as you can about the different MS drugs. A good place to start is with the doctors prescribing information sheets that come with the glossy pamphlets your neurologist likely gave you. They can also be found online at the pharma companies' sites. For Rebif... http://emdserono.com/cmg.emdserono_us/e ... _19765.pdf general info at http://www.rebif.com/index
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Re: Should i take Rebif?

Postby Mrmr » Fri Jul 10, 2015 12:01 pm

Thank you EricDrake and NHE
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Re: Should i take Rebif?

Postby jencor69 » Fri Jul 10, 2015 1:06 pm

My advice as an 'MS veteran' of 25 years is NO don't take any drug. None of them have been proven to have any effect in long term studies. I have never taken any disease modifying drugs and I am symptom free after being treated for CCSVI and cranio-dental & skeletal asymmetries. Physical problems, no drugs required.
Before you make your mind up, please read this article it could save you
http://dramir.com/blog/archives/667-The ... ents..html
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Re: Should i take Rebif?

Postby EricDrake » Sat Jul 11, 2015 1:07 am

jencor69 wrote:My advice as an 'MS veteran' of 25 years is NO don't take any drug. None of them have been proven to have any effect in long term studies. I have never taken any disease modifying drugs and I am symptom free after being treated for CCSVI and cranio-dental & skeletal asymmetries. Physical problems, no drugs required.
Before you make your mind up, please read this article it could save you
http://dramir.com/blog/archives/667-The ... ents..html


I suggest to you to don't simply listen to any of us, read through careafully the forums of the drugs here and on other pages, read about the expereiences of ones who have been taking it for a while, and dont just listen to ones like me who will just start or ones who never tried one like jencor. Read through real experiences.

The link is also about a theory currently with no better proofs then 'autoimmunity', Read through CCSVI files but be careful, this is not an accepted treatment. I also read about it a lot and talked to patients who had it and most of them did not have any permanent success. I am happy that you had succes with that jencor but there are ones who did not succeed and even got worse and the reason for that this theory is not fully understand and there is still a lot to learn to make it an effective and safe treatment choice.

Read through carefully all the available info, read about recommended supplements, fortunately we live in a age when information became easy to gather and we have much more choices not like 15-25 years ago.
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Re: Should i take Rebif?

Postby vilnietis » Sat Jul 11, 2015 1:59 pm

Hi Mrmr,

I was in similar situation 5 months ago. I had my first attack, which affected by walking and hands. I was suggested to take REBIF 44mcg x 3 a week. I have many lesions in my brain and 34 in spinal cord. So I started taking REBIF. Everything went fine with doses 8mcg , 22mcg. With 44mcg I had literally 3 weeks of nightmares. I usually took REBIF at 10 p.m., approx. after 3 hours at 1.a.m. my whole body was shaking. It was crazy. Usually shaking stopped at 5 a.m. So I had only 3 hours of sleep for a couple of weeks. Later on, side effects dissapeared and I was sleeping like a baby. And last 3 months tolerated REBIF well. Almost didn't noticed any side effects. Now I'm not taking REBIF or any other DMD.
REBIF - your personal decision. But I highly recommend you to start vitamin D in 10 000 IU per day! Vitamin D3 add on treatment to IFNB reduces MRI disease activity as suggested in this trial:
http://www.ncbi.nlm.nih.gov/pubmed/22362918

In the end, I lost believe in REBIF and my success recovery I believe is due to my vitamin D level > 200nmol/l and diet changes.
I do not regret taking REBIF, it was too scary to do nothing at that time to me. Now I'm more confident without any DMD and looking to other alternatives.
Besides, didn't find any studies which confirms interferon success in a long run. Contrary, they have more side effects than benefit. Like greater grey matter loss after longer periods.
And remember, you can always stop the treatment!
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Re: Should i take Rebif?

Postby mariacallous » Sat Mar 19, 2016 12:58 pm

Rebif has worked well for me. I've been injecting it since 2000. My MS was galloping and I was having continuous relapses. Now I have an attack every 4 years. Success story. It is covered by the local health system, so I don't have to pay.
I also take LDN which has had a magic effect on my bladder since 2009. When I forget to pack my homemade jar of LDN, I have horrendous urinary incontinence and my partner has to wipe up after me.


I know that people have strong views about Beta interferon, especially if they aren't able to benefit from it, however, my neuro is convinced that it's held my progression back. No relapses, no new lesions. Win, win. I have had the fluey side effects. They respond to painkillers and I get a nice rest in bed.


If you are offered a dmd, then at least you'll have regular checks with a neurologist. Better than trying to manage without help.
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Re: Should i take Rebif?

Postby mariacallous » Sat Mar 19, 2016 2:19 pm

jencor69 wrote:My advice as an 'MS veteran' of 25 years is NO don't take any drug. None of them have been proven to have any effect in long term studies. I have never taken any disease modifying drugs and I am symptom free after being treated for CCSVI and cranio-dental & skeletal asymmetries. Physical problems, no drugs required.
Before you make your mind up, please read this article it could save you
http://dramir.com/blog/archives/667-The ... ents..html




Your post sparked a memory. You are also 'Emma' wife of ejc aren't you? You took copaxone, it's there on Google. Please don't distort the truth. Jeez, I hate the fringe world of MS.
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