Getting worse on Rebif?

[mochadog]

I'm new to all of this and so I looked to see if there were other threads that talk about getting worse on interferons but couldn't find anything easily... so asking this: I started Rebif 3 months ago and for the last month I had new symptoms show up and old symptoms worsen. I did another round of steroids which helped the new symptoms for a few weeks, and don't have a viral or bacterial infection so I'm starting to wonder if I may be part of the 1/3 of us that do worse on interferons? I already developed anemia and blood blisters from the Rebif (rare side effects) so it wouldn't surprise me - but mostly it's because I feel so much worse now than I did 3 months ago. Any experiences or thoughts welcome. THX!

[BigA]

Are your symptoms getting worse or are you having relapses? If you're new to the disease, it's hard to know what is part of your nervous systems new repertoire or what is new.

I was paranoid about the 1/3 1/3 1/3 rule as well when I started Avonex. After 2 years, I'm certain I'm not in the bad 1/3. Also, we never heard from that loudmouth researcher who did this research.

If you are doing worse on Rebif (note, don't measure by your symptoms, only by relapses), then you might switch to Copaxone. However 3 months is generally not enough time to know and probably you're anxious about it.

Have you had your VitaminD levels checked? They're typically low after a relapse and you should have them checked and supplement if low. they almost certainly are.

[Tomjadg]

I did Rebif for 8 months with a steady decline, so I switched to Ty 10 months ago.
Still a steady decline, so I am looking at another change next month.
Some of these drugs work great for some, and others like me, not so much.

[heliotrope]

I'm new to all of this and so I looked to see if there were other threads that talk about getting worse on interferons but couldn't find anything easily... so asking this: I started Rebif 3 months ago and for the last month I had new symptoms show up and old symptoms worsen. I did another round of steroids which helped the new symptoms for a few weeks, and don't have a viral or bacterial infection so I'm starting to wonder if I may be part of the 1/3 of us that do worse on interferons? I already developed anemia and blood blisters from the Rebif (rare side effects) so it wouldn't surprise me - but mostly it's because I feel so much worse now than I did 3 months ago. Any experiences or thoughts welcome. THX!

It's entirely possible. I was pulled off betaseron,because my walking was getting much worse.

[mochadog]

Thanks all. I am definitely anxious about it because it's really hard to know what's "normal" and what's the Rebif, or ? Right now I'm slowly feeling worse almost every day, - definitely worse than I did with the initial symptoms. It is SO hard to know what's a relapse and what is the crud floating around in my nervous systems new repertoire.

Initially I had sensory pain that it took 4 months to sort out but was tolerable before I started the Rebif. Those initial symptoms have been gone for a month and are showing up again every day, though not necessarily all day.
And now I have new sensory symptoms that I haven't had in the last 8 months and that went away with the steroids but are back and slightly worse just 2+ weeks later. Plus I'm dizzier every day, it's harder to concentrate, I've now got shaky hands/tremors and muscle spasms - all new things that I didn't have before. Can I relapse 2 weeks after steroids?

My Vit D level was just over a hundred 2 months ago and I'm still taking 5,000-10,000 each day (think that was one of the first posts I read from you BigA - thx!). I'm committed to sticking with the Rebif as I know it takes at least 3 months to even start to be effective (and I've gone through the hardest part) but I guess I just don't want to wait 9 more months to find out it either was making me worse or I had a relapse before it became effective and they can't tell which one. When's a good check-in point to say this isn't working? 6 months?

Sorry for the long post - appreciate the input! My MS Doc is 2000 miles away and I have to wait until January to see a local MS neurologist.

[mochadog]

An update

Thanks for feedback. I love this forum and appreciate everyone sharing their experiences and encouragement. You all have helped me so much - thank you, thank you!

An update: My bloodwork was poor enough (low WBC, iron and platelets) that I am down to the 22 mcg dose and while I'm feeling a little better on non-shot days, I still feel much worse overall on the Rebif than I think is normal adjustment effects 4 months into this. If I just had flu- like side effects for a day after each shot - no problem, but actually I barely have the flu-like side effects and instead feel cumulatively progressively worse each day and each week and was thinking about having to quit my job... And I'm a determined person so thinking about quitting my job due to how I've been feeling told me a lot about listening to what my body is telling me. So I'm going to talk to my Dr about trying Copaxone.

[pontiac]

Vitamin D

Does anyone know how much viti d is recommended while doing rebif shots? I have always taken 2000 iu D3 daily but wonder now if that is enough or even the right D vitamin, and what is it suppose to help with?

[BigA]

I take 10,000IU per day. Your Neurologist won't tell you the right amount to take, you'll have to do research. Go to the medication section of this site and there are a few threads about it.

[Sequoia]

I think BigA may have meant the "Tara's Nutrition & Supplement Notebook" forum.

Here's the most recent thread on Vitamin D:

http://www.msworld.org/forum/showthread.php?t=116467

And here's an older thread:

http://www.msworld.org/forum/showthread.php?t=114525

There are others, if you scroll through the pages.

[maximumlite]

I know Rebif don't make you feel better but sometimes I wonder if it is doing anything. I'm starting my 5th month and have had 2 relapse's since I've started and have days like yesterday where I was so Fatigue'd I slept for 18 hours straight. My neuro wanted me to start on TY but no, I have to play the insurance game and went from RRMS to SPMS in 6 months. My neuro said he likes to give it 6 months to see how it is working, but I feel like I'm slowly going downhill

[deedee1]

Rebif

My doc was against me taking rebif. Evidently the makeup is similar to bataseron which I had awful flu like symptoms.

I take copaxone know with no side effects. Good luck and keep us posted.

[mochadog]

My Neuro-Opthal and my Neurologist agreed that between the poor bloodwork and incapacitating side effects (not flu-like, but instead severe dizziness, buzzing nerve endings throughout my legs, complete lack of appetite, etc) I am switching to Copaxone. I've been off Rebif for a week and I'm better than I've been in months and months.
I know I'm at risk for relapsing until the Copaxone starts (up to a month) and becomes effective 6-9 months later and was offered monthly steroids until then. For now, I'm giving it all a bit of a break and will wait to decide in a few weeks. I'm just enjoying feeling that I better understand what's the MS and what was the Rebif.
Thanks again for this wonderful and supportive forum for asking questions and learning from others' experience! You all have been sanity-savers

[AnonyMS]

Rebif will raise your body temp leading to some bad symptoms.
I took it for 4 months and had 2 exacerbations in that time, that left me barely able to walk or function.
I would wake up the next day feeling like I got beat up. It got to the point where I started dreaming I was getting jumped by a gang and beat to death, nightly.
Site reactions were bad too. Overall simply the worst time of my life. Started Gilenya and it was a night and day difference.

Found out recently that I now have a needle phobia, and I blame that on Rebif. Never had issues with needles until I started that. Weird.

[lemstar]

YES! Worse on Rebif....

I was formally diagnosed in June 2009. The flare that led me to diagnosis was in March, and had mostly resolved. I started on Rebif in July, and within days, my numbness and tingling increased, and continued to increase. My neuro at the time was non-responsive to me, and I changed docs. In the following months, I had a case of diverticulitis that would not resolve, despite repeated antibiotics, and wound up almost dying from abscesses, and then wound up with a colostomy. I credit Rebif with some of this, but certainly with the increase in sensory symptoms. After 10 months, I quit Rebif, and have been on no meds.
It is noteworthy that my first episode was 31 years ago, with little progression thru the years. My second episode was in March 2009. So I have gone a long time, without meds, with little progression, so I do have that bit of history going for me.
My MRIs have remained stable, and I am not on any meds, except for 5000 units of vitamin d daily.

[jazzygurl135]

i DO NOT respond to any of the CRAB drugs so far and i am on my third one! Also did not respond to tysabri, gilenya, methotrexate and cytoxan....