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  • nursechik03
    I am currently on week 6 of Rebif therapy. I tolerated the titration pack ok, but since starting the 44mcg, I have experienced low grade fevers, body aches, chills, and worsening headaches. I have tried giving myself motrin before my doses, and taking my doses at bedtime, but it does not seem to help. I am usually in bed for 12-24 hours after my shots. Does anyone have any other suggestions, or input, beause the side effects are just as bad as my MS symptoms, plus my MS symptoms do not seem to be improving. I am trying to be patient in hopes that the medication works, but at what point should I look into a different therapy. I am new to this and was just diagnosed in May. Any input and advice would be helpful, thank you! 
  • badgergrrl
    Hello,

    I was diagnosed in March and started Rebif in April this year. My experience was similiar to yours in that I tolerated the titration pack well and had more side effects with the 44 mcg. However, after a few weeks, it got a lot better. I think a big part of it, for me at least, is figuring out the best pre-medications for you and the best time to inject so you can sleep through the symptoms. 

    Here's what I do: Take Aleve at about 6:30 pm. Inject about 7 pm; in bed by 10. When I get up at 6:00 for work, I take more Aleve right away. Since it lasts 12 hours, the 6:30 pm dose gets me through the night. When I started I was taking tylenol but would wake up in the middle of the night with chills.

    I also find that staying well hydrated, not drinking alcohol the day I inject, and making sure I have 8 hours to sleep all help me wake up with fewer side effects. I am still more fatigued than usual the morning after a shot, but my doctor prescribed something that is really helping with the fatigue - amantadine, which doesn't give me any side effects. I don't like taking drugs when I don't have to, so I only use it mornings when I need to go to work. I would suggest talking to your doctor about what could help you the morning after an injection.

    The Rebif won't help your symptoms go away from what I understand (none of the MS preventative drugs will). Rebif will reduce the number of relapses you have and help prevent new lesions from forming.  I understand it is frustrating to be injecting yourself with a medication that makes you feel sick and doesn't have benefits that are noticable, but remember it is so you don't relapse and get more symptoms in another few months.

    It is super frustrating when your symptoms don't go away. I read and was told that your symptoms can continue to get better over 6 months and even beyond after a relapse. So hang in there, and you will continue to see improvement. For me, I lost pretty much all the use of my left hand - I couldn't write, type, or hold a glass. If I had something in my hand, it would just fall to the floor - I couldn't keep my grip. The first month, thanks to steriods, I had a lot of improvement - I could write about a sentence, pick up a glass, even type for awhile. I felt like my progress then stalled for a long time until one day I realized I hadn't dropped anything in a long time, and no longer felt my hand cramping after typing a paragraph. Sometimes the pace of healing is so slow we don't even notice it for awhile.

    The new oral drug seems promising. I talked to my doctor about it and she wants me to stick it out on Rebif for at least year since it's a more proven medication.

    A book that really helped me when I was first diagnosed was MS For Dummies and I would recommend it. It was written by my doctor. :)

    I hope this is helpful.
  • nursechik03
    Thank you for the input. I actually was taken off the Rebif today and started on Copaxone, because I suffered another flare up and am back in the hospital for high dose steroids again. I am really hoping these steroids start working soon, though because I have already failed the taper to oral steroids... Ive been back in the hospital for a week now :(
  • ccteddybear2014
    I actually thought Rebif was harder for me since i had to take the shot three times a week and i hate doing shots so the doctors put me on avonex which i can take once a week and doesnt hurt as much as rebif does because the neddle goes into the muscle and now i feel like i can do anyhting i want because this medicinde is kind of stronger for me i dont know about others but its my experience
  • ylw2063
    Hello, I am new here so please forgive me. I wasn't sure how to ask a question, so I just clicked reply. My question is, I have had a MRI two years ago and had several leisions noted. I have had symptoms on and off for two years. Symptoms such as numbness, tingling, blurred vision, double vision couple times, muscle pain, bouncy eyes, extreme vertigo, dizziness. my Neuro at the time was hesitant to dx me wit MS and said I had Fibromaligia. I was feeling worse, so I went to an Internal Dr and gave him my MRI report and he sent me to another Neuro. Here it is 2014, and I had another MRI done for this new Neuro. He also completed an vision test for the bouncy eyes. I went in for the results on 2/3/14 and he has dx me with MS and gave me predisone to start with and I will start with Copaxone this week. Well, somewhere in my mind I am thinking, maybe we are jumping to conclusions that I have MS. I am not really fully sold on the idea. I don't want to start Medication and have it snowball out of control. Right now, I have good days and bad days. The fatigue is horrible. But, also on another note, I had ACDF surgery last Sept on vertebrae 4-7. That help a lot of my numbness, tingling in my arms. But I still have some. In your opinion, do you think I should wait or get another opinion or what. I am so confused, I just don't know what to do. On weekends, I spend most of my time in bed with exhaustion for the bad weekends. During the week, I will sneak a bed rest for about 15 minutes. I work from home so that makes it easy. But I am 58 years old. Isnt that too old to be dx with this? looking back, I know I have had some of the symptoms in my youth but I've done ok till now without meds. Please advise on what your feelings are? YW
  • ylw2063
    Hello, I am new here so please forgive me. I wasn't sure how to ask a question, so I just clicked reply. My question is, I have had a MRI two years ago and had several leisions noted. I have had symptoms on and off for two years. Symptoms such as numbness, tingling, blurred vision, double vision couple times, muscle pain, bouncy eyes, extreme vertigo, dizziness. my Neuro at the time was hesitant to dx me wit MS and said I had Fibromaligia. I was feeling worse, so I went to an Internal Dr and gave him my MRI report and he sent me to another Neuro. Here it is 2014, and I had another MRI done for this new Neuro. He also completed an vision test for the bouncy eyes. I went in for the results on 2/3/14 and he has dx me with MS and gave me predisone to start with and I will start with Copaxone this week. Well, somewhere in my mind I am thinking, maybe we are jumping to conclusions that I have MS. I am not really fully sold on the idea. I don't want to start Medication and have it snowball out of control. Right now, I have good days and bad days. The fatigue is horrible. But, also on another note, I had ACDF surgery last Sept on vertebrae 4-7. That help a lot of my numbness, tingling in my arms. But I still have some. In your opinion, do you think I should wait or get another opinion or what. I am so confused, I just don't know what to do. On weekends, I spend most of my time in bed with exhaustion for the bad weekends. During the week, I will sneak a bed rest for about 15 minutes. I work from home so that makes it easy. But I am 58 years old. Isnt that too old to be dx with this? looking back, I know I have had some of the symptoms in my youth but I've done ok till now without meds. Please advise on what your feelings are? YW
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  • tmag675

    Hi, 

     

    I was diagnosed this past May and started taking Rebif in June. I notice that drinking alot of water and taking a pain releiver before I inject really helps. I try to inject right before bed so tht I can sleep through the side effects of Rebiff. The only complaint I have of this medication in that the injection itself is painful and leaves me with bruises or red marks every time. Other than that, I have not had any relapses on this medication. 

  • acmsue

    Hello

    Is there any reason why the newly diagnosed people have not started on one of the oral therapies available now?

  • Sakito

    My Mom is taking Rebif too and she is also taking a pain reliever before she injects! She is taking paracetamol and this is the best working pain reliever for her also when she has headaches - maybe this helps other people too?

    For those red marks she uses a heparin ointment and that works fine for her.

  • Avatar
    This is great, pretty impressive reading about you for edubirdie reviews as well. I worked at Rebif therapy as well and it really helped me in several ways, much appreciated post this is, thanks mate.
  • msdee45

    Hello,

    I have been on Rebif for a year what I found out is.

    1. Do not take it at night you need to move the medication around. The best time is to take it in the morning or mid-morning. After breakfast. Then you go on with your day because your moving the medication around. Still take your motrin and drink plenty of fluids before, during and after.

    2. If you do not go anywhere in the morning. Go out for a 45 min fast exercise walk. still do everything else.

    3. I treat myself on my days i take my medication I get a medium to a large Slurpy from 7-11 eleven.

    DO NOT:

    Drink not drink your cup of coffee in the AM or eat a lot to sweets during the day. We  need not to eat a lot of sweets anyway.

  • Avatar

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  • abeckermusic

    I was DX'd in 2010 and have been on Rebif the whole time.  I too got the side effects you listed.  The questions I have are: Do they happen every time you have do a shot?  Have you tried a pre-shot medication regimen?  Are you taking any vitamin supplements?

    I found taking 
    daily: vitamin B-12, B-2, and D
    Shot nights (do mine before bed):  Naproxin 500mg (this is generic Aleve, talk to your doc if you have good prescription coverage), Ambien (to help sleep through the side effects)  
    This works for me, but everybody is different.  I also try to exercise every day, I have found this helps keep my body functioning better.
     
    I would get a call into your neurologist if it isn't getting any better.  there are so many other treatment options out there.  Maybe Rebif isn't right for you.  
    Remember that you have to advocate for yourself with your Neuro and doctors.
     
    Also give MsLifelines a call and speak with one of their nurses. They may have some advice as well since they are run by Rebif.
     
    Hang in there.

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