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Refib


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Old 01-14-2011, 05:03 AM   #1
Tina50158
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Refib

I fought taking medicine for 11 years. I was having lower back pain and was told I needed to start the meds. I started 2 1/2 months ago on refib. No changes the first month or second month. I am now on my third month and started having muscle twitches, heartburn, nausea and yesterday pains started in my lower left abdomen. I was better before the drugs and going to the doctor this afternoon. Ready to tell him I tried it your way now I am going back to my way.

 
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Old 01-14-2011, 08:28 PM   #2
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Re: Refib

Im hoping you mean Rebif, not Refib? Rebif doesnt cause any of those symtoms....they arent even listed as possible side effects. I think, if you are having symtoms like that, its possibly MS related, possibly related to something completely different...but I doubt very much its Rebif.

Also, Rebif doesnt even begin to start working until you are on it for 6 months, until then, its just barely building up in your blood stream. And, thats 6 months from when you start full dose, if you titrated it, starting low and working up to 44 mcgs, youve got 5 more months before its really working.

I wouldnt give up on Rebif until you know for sure that its working against you (highly unlikely) and I would definately explore other reasons why you are having the symtoms you are having...your symtoms sound very much like a flu or bug....and they can be treated. Rebif wouldnt be causing this.

Let us know what your doctor says?
Nikki
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Old 01-14-2011, 09:33 PM   #3
Tina50158
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Re: Refib

I was hoping you would answer Nikki. You answered my original posts back in October and gave me some very informative information. It actually is due to the medication. I was told from the beginning that flu like symptoms are the side effects. I just expected them to happen much sooner than they did. I had NO side effects from the drugs in the beginning and that is when I expected them. He said between 1 1/2 months to 4 months you can get these side effects. I was afraid to take any other medications with the Rebif and found out that I have no need to worry. MS Lifeline has been telling me I must take Ibuprofen before and during the first 24 hours of giving myself the shot. I was worried about doing damage to my organs. He told me the dosages that I can safely take. I really appreciate your input. Getting very little sleep this week had me frustrated. Feeling much better tonight and looking forward to a great nights sleep. Thanks again and yes I spelled it wrong.

 
Old 01-14-2011, 10:08 PM   #4
MSNik
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Re: Refib

Tina
Im almost always around! Im glad I could help...

I said that some of your symptoms sounded like the flu...guess in some ways, I was right? ...also, being on Rebif- you wont have those symtoms for long. They should ONLY happen on SHOT days and only last about 6 hours post shot....you should feel fine by the next morning, if you manage to get any sleep.

Realizing that you are afraid of taking pre-shot drugs, Im only going to offer this to you. One Aleve, helped me tremendously when I went thru it.....if youre not up to that, maybe one Tylenol PM, to help you sleep thru the worst of it, would be my next suggestion. Ive tried them both, they both worked for me.

BUT the good news is, this WILL STOP. It takes about 16 weeks or so for the body to get used to the new drug.....once it does, youl be banging out your shot and going on with your life, nothing more then swallowing a vitamin! Ive done mine in bathrooms, airplanes, even in a moving car (not while driving!). We do what we must!

Let me know if you have any other questions...and hang in there...the fact that you are getting side effects means that the drug is entering your blood stream and starting to work. Bet your next MRI is a good one!!!!

Hugs,
Nikki
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Old 01-14-2011, 10:19 PM   #5
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Re: Refib

You helped me in September now again today. I have had such a good outlook until this last week. I guess I found out I am not a very good speller or good company when I don't get enough sleep.

 
Old 01-15-2011, 03:41 AM   #6
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Re: Refib

Have you had your liver enzymes checked since you started? I've been on Rebif since October...just had my liver checked...it was 2x what the normal range is. However, doctors said to continue (monitoring of course). The initial peak in liver enzymes can resolve as the body adjust to the medication. I mention this because elevated liver enzymes can cause some symptoms nausea fatigue etc... Muscle twitching SHOULD NOT be related to Rebif or liver issues. You made the choice to try it, make sure you give it a fair chance. Nikki is right...at least 6 mons of therapy. Hope you begin to feel better...it's no fun to wake up every morning feeling like crud. For the record...I haven't felt so hot on Rebif either, but I'm having the liver enzyme issues. I'm sticking it out for a few more months. I need this drug to work for me...I don't think I have another medication option. I'm not willing to try things like Tysabri, etc....

 
Old 01-15-2011, 08:47 AM   #7
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Re: Refib

Almost everyone who starts an interferon gets the elevated liver enzymes. I had them too...a Good Neuro- will keep you on Rebif for another 6 weeks and recheck them...almost always, they come back down.

You can live with elevated liver enzymes for about 6 months to a year, without doing any damage to your system, after that, if it doesnt appear they are dropping down, then your doctor will talk to you about taking you off any interferon. That happens less then 2% of the time according to Rebif documentation.

Im willing to bet that yours will be fine by the next blood test. Its so common for this to happen, dont let it scare you. Its just as likely for them to be "normal' at the next test result...
Nikki
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Old 01-15-2011, 11:09 AM   #8
Tina50158
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Re: Refib

I have been checked once and have the script to repeat the first of February. What really frustrated me is I am having difficulty walking. When I went to get my handicap parking permit the girl told me the forms changed as of Jan 1st and she wouldn't accept the new one. Went back with the new one, filled out by my doctor, unfortunately ended up with the same woman. He didn't check the permanent or temporary box. Again she wouldn't give me my pass. I know is was my doctors fault but what would have been the big deal for her to ask then check herself. I lost it and told her "I have MS, I don't want MS I will let you have the pass if you want to take it from me. I know that was mean and uncalled for but now because of her I have to go for a third time.

 
Old 01-15-2011, 07:05 PM   #9
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Re: Refib

Wait until the first time you USE that pass and you get a strange look from the person who had to walk further then you. Ive been known to say to rude people "if you take my MS, you can have my placard" and "if you give yourself shots 3 times a week to keep walking, you can have one too".

Its hard sometimes, but you wont always need to use the placard, just when you are having "bad" days/ weeks. I try not to use mine often, but I have to admit, when its really bad out and Im stiff and walking badly, or when Im working and have to carry heavy marketing material into a hospital, those handicapped spaces are life savers. Its your right to have that. Im sorry its been so difficult for you to get it, but it will be worth it in the end!
Nikki
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Old 01-18-2011, 04:24 PM   #10
Tina50158
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Re: Refib

A friend who worked there said I can mail it in. She said they are disgruntled city employees. I guess some people have to show their power and picking on the handicap is their only way. Guess I need to LOOK more handicapped walking like Festus just doesn't do it.

 
Old 01-18-2011, 04:54 PM   #11
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Re: Refib

Quote:
Originally Posted by LeahJarvis View Post
I have most common disease of digestive system (IBS), what I can do for its cure?
There is an IBS forum that could help you. This is a MS forum
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