I have never felt this bad in my life. Is this the Rebif?

A board to discuss the Multiple Sclerosis modifying drug Rebif

I have never felt this bad in my life. Is this the Rebif?

Postby Uprightnbreathin » Sat Oct 13, 2007 1:57 am

I now have such a problem with this drug. I never knew it until I had a lapse in my insurance coverage and had to be off the meds for six weeks. I felt great (still had MS i know... but life was better)!!! I am now back into the dull everyday life of M.S. and the limitations that that brings to the table. I hope that these flu like symptoms will go away! I now have alergies.... due to the drug? I have never had them before! I now have depression... I know that this is not from the drug, I am sure that this is now due to my working five hours a week and reaping those rewards (LOL).

The problem comes with the decision of weighing the unknown with the unknown. Should I stay on this medication... or switch? They are all similar and this drug is supposed to be best? Life was much easier two years ago!!.... Before this disease was in my face..... and before I started walking into walls.
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Postby carolsue » Sat Oct 13, 2007 10:33 am

I'm sorry you're not feeling well on rebif. Have you been on it for 2 years? Some people need a few months to get used to it, but 2 years should be enough time for that.

I can't tell if you were joking, but depression is a known potential side effect of interferon. And depression can make you feel physically ill. So you need to get this treated if you aren't already.

Hang in there, and I'd talk to your doctor/nurse before making a decision to go off rebif and switching to something else. It sounds like you have a sense of humor--keep that up!

best wishes,
carolsue
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Postby GeoGuy » Fri Oct 19, 2007 8:05 pm

The flu -like symptoms should pass. I've been on Rebif for about 9 months total and mine have finally subsided. I have had feelings of anxiety, but not depression. Definately talk with your doctor about that. The nurse with MS Lifelines suggested taking the injection earlier in the evening, say 6 or 7 instead of right before bed, to help with the anxiety. It seems to have worked. Something to do with being active and metabolzing the Rebif faster. Maybe that would help.
RRMS since 01/07.
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Postby conandcait » Thu Oct 25, 2007 4:34 pm

Hi! inow this was posted a few days ago, but had to add my two cents... I took Rebif for 3 months. I titrated 8.8,22 and landed at 44. I had thinning of and hair loss, big red welts, and horrific insomnia. Never had before Rebif and I have taken Avonex, and Copaxone as well. When my liver enzymes came back 3 times normal (Oct 12) my neuro took me off Rebif. Since I went off, I have had a 2 week relapse of my symptoms. They went away 4-5 days ago. I stopped going to the gym, volunteering at church and at my children's school. The headache is out of control as is the insomnia, and I have never felt more like a sick person then I have since beginning Oct. You're not crazy, I felt worse on it too!! Kelli
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Postby Loobie » Thu Oct 25, 2007 5:40 pm

Interferons can do that. My doctor always said "most people" (I'm not one of them) have a decrease in flu like symptoms. I did for about the first two years. Then they went out of control and I got depressed for the first time in my life. I went off the drug and felt very stable for about three years. I have seen a recent increase in symptoms for the last year, but I felt much better for a while there. When I was on Avonex I also couldn't exercise like I could when I was on nothing. There was such a major difference that I know it wasn't all in my mind.

I really don't know if going off of the Interferons made me start sliding sooner or not. Who knows, maybe I was just having a relapse and they got worse during that. I don't think anyone can say since so many people relapse while on them. It's just MS, but I do know that Interferons personally made me ill, fatigued and depressesed; all of which went away almost immediately upon my quitting. But they seem to work as advertised for some; just not all of us.

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Postby conandcait » Fri Oct 26, 2007 5:24 am

Hi there!
Glad to know it wasn't me. I can't remember a time in my life when I have felt well. I have always felt poorly. When I first began the Ritalin for fatigue 6 yrs ago, I felt like my old self. Before that, I couldn't make the bed without being exhausted. But as we all know, the efficacy of that wears off. Provigil and Ritalin XR did the same thing. I felt okay on Avonex, but just couldn't do the shots anymore. I swear I felt every side effect Rebif could give you. Who knows if it was the Rebif that made me relapse or if it was timing. Having had it for 17 years, maybe it's just all in God's plan to relapse now. Feel better though, with no residual deficits that I know of!
Thanks,
Kelli
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My story.. if it helps

Postby Mari » Thu Feb 21, 2008 4:10 pm

Hi Folks,
I started Rebif in Oct'07. The dosing up went fine to 44mcg with no problems. I started to notice at the higher dose that I would be wiped out the next day, both emotionally and physically. Prior to the Rebif and my Dx in October, the only symptoms I had were extreme anxiety, some deep depression and a few bouts of fatigue. In my opinion, the Rebif only added to the problems I was having. I had hopes that it would solve the anxiety/depression problem, but it only added fatigue and malise for a solid day after injection.
I consulted with my Doc, and we decided to lower the dose to experiment with the effects. I found that at between 10-20mcg, I could tolerate it with no bad effects. Unfortunately he felt that this dose was not therapeudic and decided to take me off it and have an MRI done. That's when the relapse occurred. Wicked bad fatigue, numbness in feet/hands, wobbly legs.. MS in it's familiar form arrived in my life. So.. was it suspending the Rebif, or the added strain of Winder Blahs, who knows. I went back on the Rebif at 22mcg, and I'm back to the flu-stuff 3x week. I know my doc is considering Copaxone and Tysabri now. I have a consult with him in a few days and I'll know better then. Does this sound typical?
Thanks!

Mari
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Postby carolsue » Thu Feb 21, 2008 5:47 pm

some people, like you, have bad side effects to beta interferon, while others don't. so for some people, yes, what you're experiencing is typical. good luck finding a therapy that will work for you.
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Postby Grumpster » Mon Mar 03, 2008 9:08 pm

It sounds like you are having severe, but not atypical side effects. I am prepping myself for a shot of that Rebif Cra- tonight. I feel really lousy the next day usually. I do get some relief by taking 400 mg ibuprophen just before bed that night and right in the morning the day after.

Rebif sux, but I believe it to be the most effective of the CRAB drugs. Good luck Mari!!

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Thanks for the Response

Postby Mari » Tue Mar 04, 2008 6:43 am

Hi Grump,
It turned out that my new MRI showed no new leisons... not sure where all these new symptoms came from (Rebif, perchance?).
I am supposed to start Copaxone this week. I am looking forward to it based on the low side-effects reports. I am so tired of side effects!
Did you ever have any issues with Depression or Anxiety related to the Rebif? Perhaps my poor mind was just mistaking the malaise the Rebif causes with depression? Whatever it is, I've been away from it for over a week now and things are just looking brighter.
Thanks again for your response!

Mari
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Postby Grumpster » Wed Mar 05, 2008 5:59 pm

Hello Mari,

Good news on the MRI. That may be a reson to continue the current Rebif, but i totally understand the decision to switch. I considered Copaxone too. For now i am still on this crud, but i would like to get off it.

My side effects are many and it is hard to tell them from the MS symptoms except the timing. The next day I usually have a mega-headache like I drank a whole bottle of cheap tequila. I also usually feel more shaky and wicked tired. Did I mention the intense headache? I also have ON pretty bad so that seems worse too.

As far as depression and anxiety you should read my post titled MS Depression and me. That will give you an idea, but yes I have had depression and I am on antidepressants. Anxiety not so much besides the anxiety of not knowing what part of me will be scewed up when I awake. The depression for me is likely MS related and Interfeuron makes it worse. If you feel like jumping under a bus I suggest professional help.

God Bless and good luck with the new stuff.
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Re: Thanks for the Response

Postby bebe » Wed Mar 05, 2008 7:43 pm

Mari wrote:Hi Grump,
It turned out that my new MRI showed no new leisons... not sure where all these new symptoms came from (Rebif, perchance?).
I am supposed to start Copaxone this week. I am looking forward to it based on the low side-effects reports. I am so tired of side effects!
Did you ever have any issues with Depression or Anxiety related to the Rebif? Perhaps my poor mind was just mistaking the malaise the Rebif causes with depression? Whatever it is, I've been away from it for over a week now and things are just looking brighter.
Thanks again for your response!

Mari

Interestingly enough, a recent head to head study between Rebif and Copaxone showed no difference in adverse events. Yes, there was more flu-like with Rebif (typical for an IFN), but Copaxone is not without side effects and this study showed that. The injection site reactions and induration (lypoatrophy) was worse with Copaxone. Another interesting fact- no difference in depression. No too surprising though, in the Rebif pivotal trial, there was no difference between Rebif and placebo when it came to depression. Depression is caused for many reasons. Some believe that IFN can worsen depression, but it doesnt just cause it on its own.

Flu-like symptoms can be bothersome...some things to remember
-If taking it at night doesnt work for you, try taking it in the morning. There was a recent publication showing that switching the time of injection to the am worked for some people (some physiological reason, I cant remember)
-Dont skip a dose. You want to achieve a "steady state" of medication...your body will become acustomed to the medication and the flu like symptoms will taper off.
In the trials, 50% of people got flu-like, 50% did not. The majority resolve in 2-3 months.
-Be sure to use an analgesic if you need it. A low dose steriod can also be used if refractory. Remember, there are 2 doses of Rebif and some people do just fine on the 22mcg if you cant make it on the 44mcg (and the data on the 22mcg is pretty good...not as good at the 44mcg, but you will still get more IFN with that than taking Avonex)
-Keep the end-goal in mind, which is the reason for all this- Rebif has been shown to be the most effective in head to head trials and cross-comparison studies (except for maybe Betaseron but it probably has worse flu-like)

Hopefully you have a good nurse or ARNP that can help you work through this. Too many doctors will yank people off therapy without finding solutions that can be most benefical in the long run. A good recommendation would be to find an MS specialist in an MS Center that has an ARNP that can spend time with you.

Good luck.
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Rebif 22 vs. Avonex

Postby NHE » Wed Mar 05, 2008 11:14 pm

bebe wrote:the data on the 22mcg is pretty good...not as good at the 44mcg, but you will still get more IFN with that than taking Avonex

That might be true if the injection method were the same but it's not. I've been told by a nurse that an IM injection has an absorption efficiency of around 80% while an SC injection is down around 40%. Taking this information into account, Rebif 22 three times/week would give you 66µg*0.4 or 26.4µg/week while Avonex would give you 30µg*0.8 or 24µg/week. I'm not sure if the extra 2.4µg would be a meaningful difference. In addition, with Avonex there are little to no injection site reactions unlike with Rebif or Betaseron.

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Side Effects of Copaxone

Postby pollyblue » Sun Mar 09, 2008 1:58 pm

I was on Avonex for 9 months and then switched to copaxone because I thought it would be easier, not so many se. I have now been on Copax for 2 months and I really hate it. I have tender welts allover and lumps under the skin (which very slowly disappear) my joints ache unbearably, hands feet ankles knees hips and jaw the worst... My lymph nodes swell up mostly in the groin and are very tender. It has also interfered with my menstruation causing me to have break through bleeding during the past 2 months. I have decided to stop and when I told my dr I wanted to go back on Avonex he suggested I look into Rebif too, that's why I am here. I am worried that the rebif will just be a combo of avonex and copax as far as injection sight reactions and flu symptoms... I really have medication in the first place, it sucks we have to choose between bad an worse for treatment or deal with the unknowns of disease progression. :?
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Postby Punchy » Mon Mar 10, 2008 11:53 am

You could try getting pregnant, like me :wink:

I have 6 weeks of Rebif left and I am counting the days. It's been a year and I despise it, utterly loathe it. I will probably move on to copaxone once the pregnancy is over, but it all depends on how it goes while I am unprotected.
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