Anyone else on Rebif?

I was diagnosed with MS 2 weeks ago, and my neuro is suggesting that I start treatment immediately.  We have discussed all the treatment options, and Rebif seems to be the right fit for me.  Is anyone else on Rebif?  Any pointers or tips or suggestions from people who have been on Rebif (or Betaseron or Copaxone or Avonex)?  I'm a little scared to start therapy, but also excited.  I'm trying to be very positive about this.  
Thanks!

[poker247]

Madison,

Everyones tolerance from the medication may differ. If you have a history of depression or prone to depressive moods Rebif is NOT a good fit.

I suffer from depression and was on Rebif and it increased my depression as well as suicidal thoughts. After the increase in my lexapro (anti-depressant) did not help my Neutrologist took me off Rebiff and wants me to switch to Copaxone. He said Copaxone has a very low rate of increasing depression.

The injections for me weren't bad and I adjusted and tolerated doing it myself with ease.

I urge you to give the medication a fair shake. For the first 3 months you may experience side effects but they will subside and lessen over time. The Rebif or any other medication is the first line of defense to prevent the disease from progressing so stay strong and I hope things go smoothly for you

~Scottie

[madison130]

Thanks!
I do have a history of depression..  currently on 40mg/day of Lexapro myself, as well as 20mg/day of Elavil.  
I guess the only thing to do is try it and see what happens.  I'm sure my doctor's will be keeping a close eye on things.  My neuro and GP have already shown me that they're going to be working closely together on this.  
I've never been on an injectable med before, but I don't think that it will bother me too much.  With all the tattoos and piercings I have I don't think I have room to complain!  haha =))
Thanks for your input!
And best of luck to you in the future as well!

[sllowe]

Hi Madison,

Welcome to the forum. I'm on Rebif and find it very tolerable. With all meds, there are always side affects, but you do have to do the weighing pros vs. cons text book stuff they throw at you.

I inject straight w/out an auto injector - have found this to minimize site marks.  I still get them, but it's mostly a silver dollar sized red mark, not raised or anything and it fades. Picking spots are important and when you get read to inject the hip/buttocks area, let me know because the chart they give is a bit off.  Love handles are the best area and I can be more specific.

Your dose will be titrated to minimize anything flu like, and it's not as wretched as the flu at all.  You may not even notice more than a slight headache and you can ward that off by injecting before bed. Ask anything.

How are you feeling otherwise?

Thank you for joining us.
-shell

[doublevision1]

Rebif was the first DMD I tried, in Feb 2008, a couple of months after dx.  I had to go off it 8 weeks later as it was increasing my liver enzymes significantly.  I went off for a bit, liver enzymes came down, went on it again and they shot back up again.  Copaxone was my only first line option left, because all the interferons come with the same risk re: liver.  I was in the something like 3% of patients whom this will happen to.  I have no history of liver problems and up to that point had used very little medication my entire life, not much more than the occasional Advil.

Been on Copaxone a little over a year now and doing fine with it.  Don't mind the daily injections, it's just part of my bedtime routine.  Initially the injections did hurt, more so than Rebif which didn't sting at all.  Once my system adjusted to the medication, ie: within weeks, it was fine.  Site reactions bad at first: large, red lumps; now, I can hardly tell where I injected from one day to the next.  

6 months after starting Copaxone I had a sudden, painful, but luckily short-lived episode of Optic Neuritis.  IV steroids started less than 24 hours after the onset of this episode, which I and my doc attribute to my quick recovery.  No vision loss detected several days later.

I was worried though, thinking the Copaxone wasn't helping me, and had to be reminded, DMD's don't make relapses end altogether, just hopefully reduce their frequency.  I am now nearly 10 months since that flare with no further acute attacks, just the residual symptoms that DMD's can't help anyway (fatigue, numbness, neuropathic pain).

One of our members Ess had to switch from Copaxone to Avonex due to allergic reaction/unbearable itching from site reaction.  She's the only one I can recall here who spoke about such problems with Copaxone.  There may be others but her's is the only situation I remember reading about.  Overall Copaxone seems to be very tolerable.  My regular MS specialist and my '2nd opinion' MS specialist at B&G Hosp. in Boston both stated Copaxone is their first choice; but only told me this after I was on it.  They didn't want to sway me one way or the other, although Boston doc was emphatic that when it came to the more aggressive drugs, he did not like mitoxantrone and considered it a drug of last resort.

Sorry, got on a roll there, more info than you asked for!

Good luck with starting your treatment and remember your decision isn't carved in stone.  If it doesn't work for you for one reason or another, fortunately there are other options.  

[Guitar_grrrl]

Hii!

I'm on week 11 of Rebif, and I should be getting my blood work back next week re: liver enzymes, thyroid, etc.

The titration process was a cinch, and like Shell, I don't use the "Rebiject" devise, I just self inject.  I'm up to the full 44 mcg, and other than some stinging on injection, there's the painless red blotches at the injection sites (like Shell).  I may start icing the site before injection for a minute or two...Flu symptoms are minimal, but I inject before bedtime and take a couple of Ibuprofen just before.  Sometimes the next morning I feel a little "creepy", and I take 2 more Ibuprofen and I'm good to go.

Good luck with making your choice - you really can't go wrong.  If an Interferon doesn't work, try the Copaxone.

Cheers,
Guitar_grrrl

[b125]

Hi, I was dx'ed at the end of May with MS, first major symptom being optic neuritis. I was given a prescription for Rebif near the end of the steriod titration. I have labs done every three months to keep an eye on how it affects things.

Everyone is different as far as what DMD they will best tolerate. I have had past history of depression, although it had lifted some before going on the Rebif, and that may be why I am tolerating it fairly well. I do use the Rebiject autoinjector, though I have had to do two manual injections when the injector malfunctioned. I have less injection site reactions using it than not, but again, that will vary by individual.

The titration was simple, and the company manufacturing Rebif will have their nurse specialists check in on you to see how your doing and offer any advice that they can. I've been at the full 44mcg for about two months now.  First couple months had more side effects - first injection I felt very tired after. Most of the others I either got a major headache, or varied between feeling extremely hot or extremely cold. Most of the time I do my injections before bed, so I can take some 8 hour tylenol and sleep through the miserable part. Last injection I did not take any Tylenol, because I'm trying to wean myself off it, but I'm not against taking it if I need to. I still have some small, dime-size red blotches where I did my injections, but that's the main side effect these days.

Definitely give the Rebif a fair shot if you and your doc think it seems like a good starting choice, but if it doesn't work well, please consider trying something else. Although the meds won't guarantee you never have a relapse, they will help to cut down on them. If you are interested in at-home training on how to do your injections (definitely helps), the company can get you set up with a nurse to come train you.

[madison130]

Thanks to everyone who replied!
Lots of useful and interesting information from you all =))
I was wondering about the nurses that Rebif says they'll send out to teach you how to inject...  simply because I live in the middle of nowhere.  haha.  I'm sure there aren't any of their nurses close by.  So maybe they'd have me go somewhere to learn?  I don't know.  Anyone have an idea?
I'm a tad worried about injecting, simply because I tend to bruise easily, and I'd rather not walk around black and blue all the time.  =))  But I'm sure my body will get used to it.  Mentally, I think I'm prepared for the injections.  With all the piercings and tattoos I have, a small-gauge needle shouldn't bother me.  =))

[poker247]

madison130,


I have 8 piercings and 13 tattoos as well and fortunately I have NEVER had a problem with needles. Also I have been a Phlebotomist(blood drawer) for the past 13 years and have drawn blood from well over 100,000 patients, so it's only fair I guess for it to be my turn LOL. I  found the titration period, and the 3x a week injections were a breeze for me.  After being on it 3 months 99% of the time I could inject pain-free.

Also if you end up with bruising, pain while injecting, or lots of red marks at injection site, do not hesitate to call and talk to a rebif nurse...they have tons of tips and tricks to make the injection and post injection syptoms (symptoms) go away.

As far as injection training I believe Rebif contracts with nurses, so they will find a visiting nurse from the closest city from you to come out and assist you with the training.

As far as the Rebif and Depression, please have a spouse, loved one, or family members look out for any changes. With me I was slowly slipping into a "black hole" and felt alone and no way out. Fortunately my wife picked up on it and urged me to notify my Neurologist.

Best of Luck!!
~Scottie

[sllowe]

Hi Madison,

They will send a nurse out to your house.  Usually, they cover an entire region, so they'll find you! They teach you and have you do an injection that day or night.

My nurse was terrific.  She even came out for follow ups, would come to my job, etc., just to accomodate my busy schedule. If I ever needed her, I know she's just a phone call away.

A nurse (in addition to the local/regional one) will also call to check in over the phone, and see how the meds are going.

The tip for marks I use most is rubbing the spot before and after. It doesn't typically bruise since it's sub-q.

I'm glad to hear your feeling mentally prepped for the injection.  That mindset will help you stay on your routine.

ttys,
shell

[A3rdgenrn]

I am a MS training nurse, I train on all of the injectable and most of the IV drugs. Rebif, Avonex, Copaxone, Betaserone and Extavia are all first line of defense drugs. Rebif and Extavia and Avonex are the same drug. Avonex is the smallest dose but the biggest needle. Extavia is a larger dose than Rebif, simply because it is every other day, as Rebif is 3x a week. Copaxone is the most compatable with your natural body and has the least side effects, but is a daily injection . The key is to get on ANY med therapy and keep going. They all will decrease the reproduction of the abnormal cell that you create, slowing down the disease process up to 4 times that of no therapy. Give any of the meds at least 6 months, if they don't seem to be working, let your Dr know. Most of these drugs can be used as duel therapy such as Rebif and Copaxone. There is also the second line of defense drugs which are IVIG and Tysabri. IVIG can be used as a duel drug with all of the injectables, Tysabri must be used alone and you must have been off your other meds for at least 60 days. I would not suggest changing to Tysabri during the summer months as the heat will affect you and you may loose some mobility while not covered by any drugs. Depression is a side effect of MS, not the drugs, but can be increased with any of the MS drugs. Get your MRI at least once a year rather you are having exacerbations or not. You can have exacerbations with no new lesions, you can have lesions with no exacerbations. Although there is no cure for MS, you can live a long and healthly life with MS as long as you are proactive with your care. 85% of the people diagnosed with Relapsing Remitting MS are still upright, mobile and ambulatory 20 years after diagnosis. My mother was diagnosed at 38. She is 72, walks 3 miles a day, rides a bike, and you would never know she has MS. Her sister was diagnosed at 54, went from playing tennis everyday to total bedbound, total care in 18 months. There is no rhyme or reason to the disease, and no two people are the same, but there are MANY drugs out now that were not available 10 years ago. You must be PROACTIVE in your care. All of the companies will furnish you a training nurse to come to your home and teach you about your medicine. Contact your medicine company or MS lifelines for help. Remember, not all Neurologist are specialist in MS, so YOU must be incharge of your care!

[hollowriver]

hi I have bin on rebif for about a year and a few months. i found the injection tool made anxious. I do mine manually. My biggest advice is thighs and but are the best places. Try to exercise a few months after being on it because it help strengthen your mussels. When I wasn't on rebif I was 19 in collage and could get my self to class because i could barely move my legs at all and I was numish. Now I do circuit work outs, yoga but its not a cure of course I still have relapses and I can only walk consistently 10 minutes but there is a huge difference. oh and remember you will bruise and to rotate your injections.

good luck hun

[Lulu54]

Hi 3rdgen and hollowriver,
you may not have noticed that this is a very old post - dating from Sept. 09.  You may want to begin a new thread and introduce yourself to our community here.

We love seeing new members ( and greeting them, too!).  I hope we will see you around more.

be well,
Lulu

[sllowe]

Adding on a big welcome to 3rdgen and hollowriver!

So glad you found this discussion - it's always good to bring them back to the forefront. Like Lu suggests above, it may be easier to welcome you on a new post - sometimes you'll get lost at the tailend of an older discussion.

A3r - my nurse is terrific. What a great field you are in - especially considering your 1st hand experience w/Mom. I'm glad she is doing well!

Hollowriver - I inject manual too! I don't like the abrasiveness of the auto-injector and find it so much more gentle to do it myself (or hubby in some spots) straight up.

Thank you for joining us!!!!
-Shell

[Pam232]

Starting a medication from the onset is the best course of action.
I have taking all 3 major and well known meds. for MS and this is my experience.
I have been on Avonex which left me very flu-like every weekend for 5 years.  It stopped working 2.5 years into the therapy, therefore wasting the last 2.5 years with no help for the MS.
Went to Copaxone for 8 years and it was awesome with no side effects, at all.
Dr. switched me to Rebif for 2 years which, over time, will leave half-dollar marks with black bruising (dead tissue).  Also, painful to inject.  Due to the Rebif issues, the Dr. has chosen to switch me back to Copaxone.  Even though it's a daily injection it is by far, the least painful and tolerant.
Best of luck to you......................the unknown is the worse part of MS, but you're taking control.  Good for you!