Lost in my new Rebif world.....

[ampryor]

My world has been turned upside down and I am so lost. It has only been 22 days since my diagnosis and 13 days since I have started the Rebif Titration Pack. I am so sick and so tired. I thought an MS attack was bad, until I started taking Rebif. I have read that it take about 4 to 8 months to get your body acclimated to Rebif, is this true? I think I am having almost every side effect that was listed and some that are not!

Has anyone had severe abdominal pain that feels like contractions??? It starts almost right after my shot. The tightness feels as if it is restricting my lungs from expanding, making it hard to breathe. This feeling does start to lessen, but has not gone away. When it finally starts to ease up a little, its time for another dose! I am also feeling like I have "medicine head", kind of foggy and cannot seem to put together a coherent thought. I search for words and names that were once easily recalled.

I am sweaty, flushing, clamy, nauseous, shaky, extremely fatigued, unable to sleep at times, cannot concentrate, very bad joint pain, cramps and very violent headaches. I have tried taking my Rebif at different times and have taken the Aleve, Advil, Tylenol, Aspirin, etc. to no avail. My PCP has not been helpful in the least. When I asked for Adderall to help with the fatigue and concentration, she immediately shouted, "NO, ITS A CONTROLLED SUBSTANCE"!!! I have gathered that she is a minimalist when it comes to medication, but come on...I have MS?!?!?!

I don't know how to get the meds that I need to manage the side effects of Rebif. I am not a junkie for God's sake!!! I have not been to work in over 2 weeks because of how miserable I have been and am worried about losing my job. I do not qualify for FMLA beca use I have not been employed there for at least a year. Can anyone give me some type of advice on how to cope and what to do about these side effects so I can get back to work, etc.???

** Moderator's note - Post broken into paragraphs for easier reading. Many people with MS have visual difficulties that prevent them from reading large blocks of print. **

[Alicious]

Man, you have been through the wringer! MS, then meds, and all of these side effects, that is just brutal. Have you called the Rebif nurse line to ask for help?

The statistic is that if you are going to acclimate to an interferon medication (Rebif, Avonex, Betaseron, Extavia), you will do so within 6 months. Some people never acclimate; some people can control side effects until they do with ibuprofen, etc. It sounds like this is not working for you. If you need bigger guns just to take the med, it may be worth talking to your doctor about switching medications.

Did your PCP prescribe the Rebif, or did a neurologist? Neurologists are pretty familiar with the side effects, and know that not everyone can tolerate certain meds. I had a hard time with interferons as well, but did great with Copaxone, for example. Copaxone is a daily injection but most people don't have any issues with it that would keep them from working. There are also some pills on the market that may be an option depending on your doctor.

Avonex, another option, is the exact same medication as Rebif, but it is once a week in the muscle. So, you may have one crappy day instead of feeling awful pretty much every day if your neuro approves. That's if you need to switch, though. I had horrible side effects with interferons, but nothing like you are describing.

Clearly, you need to go to work, and what you are doing now isn't working for you. I hope you can get some relief soon.

[Kimba22]

Hi ampryor,

Welcome to MS World! We're glad you are here, but sorry why. And I'm sorry you feel so lost, I really hope we can help you through this new journey of life with MS.

You poor thing ~ I'm also sorry to hear you are so miserable. You haven't even titrated up to the full dose yet, either. (I definitely would NOT go up to the full dose in a few more weeks if I were you!) And, yes, it can take that long for your body to adjust to it. Some people adjust quickly, even before 4 months. I was on Avonex (another interferon 1-a) and it took me closer to 8 months to adjust to it. As Alicious mentioned, it is a once a week injection (injected into the muscle, vs. under the skin). It was only one day I felt bad (but no where near as bad as you sound), and when I switched over to Rebif, I didn't have any problems.

Have you told your neurologist how bad you are feeling? (I'm assuming that is who prescribed the med for you) It is important you do so. And, no, I never had severe abdominal cramping after a shot. Your description of tightness sounds like something known as the "ms hug" (aka a "girdling" sensation), which feels like a snake is constricting around the chest or abdomen. It's not dangerous, but can be very painful. I am not sure if that is what you are feeling, if so Klonopin, Baclofen and/ or Gabapentin might help with that. Maybe it's being brought on by anxiety each time you take your shot? The only other thing, besides something like Advil, I've read some people say helps is being well hydrated the day of the shot.

Are you on any other meds? Baclofen, Tizandine, and Gabapentin can contribute that feeling of fogginess. I was in a fog for awhile on those, until my body adjusted to them. (Didn't help the dosage kept being increased, either.)

If this is so bad you can't work and risk losing your job, I'd call my neuro and insist on trying a different drug. You might want to ask about Copaxone (there is a new 3 times a week dose), Tecfidera, Gilenya, or Aubagio (all are pills) instead. A different drug you can ask about for your fatigue is Provigil. And I'd ask my neuro, not necessarily my PCP to prescribe a drug for fatigue. They are more familiar than a PCP about MS fatigue. Here's some links for you about the different medications used in MS, maybe it will help you understand some other choices: http://www.nationalmssociety.org/Tre...MS/Medications If you click on each medication, you will find out more information about them.

And, here is a link about fatigue in MS: http://www.nationalmssociety.org/Sym...mptoms/Fatigue

Again, I'm really sorry you are feeling so bad.

Take care,

[Marco]

Over time, most people do adjust to a new medication and side effects diminish, but there are people that do not do well on specific medications. The potential benefits of any medication needs to be considered along with the side effects of that medication. From what you've said it seems like your quality of life on Rebif is not worth the benefits. I wouldn't give up on Rebif just yet, but I also would not titrate up until you receive qualified answers for your current symptoms. Have you called MS LifeLines for support? You can call 1-877-447-3243, 24 hours a day, 7 days a week and someone will talk to you. Have you called your neurologist? Do you have a follow-up appointment scheduled?

I can assure you no one wants you to lose you job over a medication. Please contact MS Lifelines and your neurologist for suggestions. If they pull you off the drug then you can try something else. There is a group of patients that do worse on interferons because it increases their inflammation. I would probably try to avoid another interferon if they remove you from Rebif, but that's just me.

After this ordeal is over you probably need to circle back and determine how much help you'll get from your GP. You have a chronic, progressive disease and your GP should probably be much more available than your neurologist. If your GP is unwilling to work with you at all ... well, you just might need to find someone that will. When necessary, my GP calls my neuro for a consult then treats me. Please keep us informed and I wish you well ...

[HobbitHead]

I was on rebif for over 3 years (from my dx on). Until I stopped it a month or two back, I didn't realize how crappy it had made me feel.

All of that time I blamed the ms for my severe fatigue, weak/heavy/tired muscles...etc.

[aredmosquito]

I take Rebif and have for a year. I never had any side effects with the titration pack, only with the full dose. I know being well-hydrated helps with my symptoms, as well as taking Tylenol PM at shot time and just sleeping through any that may crop up.

I know Copaxone is now in a 3 times weekly formulation, if you'd rather not do daily shots. It has a MUCH lower side effect profile than the interferons. Lots of people do well on it.

Just a note, my PCP pretty much knows nothing about MS or its symptoms, so I just stick to my neurologist for anything relating to it.

I sure hope you find some answers! Those effects sound way more severe than any I used to have (I acclimated well to the interferon) and sound miserable. Good luck!

[emily06]

Sorry you're having such a miserable time with Rebif. I was just taken off Tecfidera for bad side effects and am looking to go on something else.

I saw there was an upcoming Rebif dinner event in my area and since I need to be on something else I called to make a reservation. But they wouldn't let me since I'm not currently on it. I told them I wanted to find out first hand how patients are doing on Rebif. They told me just to read about it. I'm so mad that that's their view on that that I don't even want to try it. They are happy to take all our money for the drug but don't want to help us become informed beforehand.

[HobbitHead]

Emily,

Are you currently on a DMD?

[emily06]

No. I've tried most all ot them so far - except Gilenya which I can't take 'cuz of eye problems. And I'm worried because I am off of anything right now.

[HobbitHead]

I had a heck of a time starting about week 3 with the tecfidera. But with a lot of help, I am past a lot of the side effects.

I was on rebif for over 3 years. Turns out it wasn't that great for me.

Why not ask right here how people are doing on it? You will probably get a lot of truthful answers.