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Old 01-20-2010, 01:05 PM   #1
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teeth1992 HB User
Question Rebif & Elevated Liver Test

Hi! I had my liver tested on Dec. 16th after being on Rebif since Oct.22nd. The doctor's office never called me and I was curious as to the result of the test but kept forgetting to call. I called today and the doctor himself got on the phone and informed me that my liver test was "slightly" elevated and I needed retested right away and if my new test was the same or higher I had to switch to Copaxone. I knew that a spike in my liver was possible at the beginning of Rebif therapy. What I'm confused about is how quickly I'll be taken off this med. even if the next test result is the same. He did stress to me on the phone that it was only "slightly" elevated, but was quick to tell me I'd be off Rebif if next test was still slightly elevated. Is this normal or is my neurologist being quick in taking me off Rebif? I thought I'd be given 6 months of so to see if my level dropped! Thanks for your input. Kelly

 
Old 01-20-2010, 02:13 PM   #2
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MSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB User
Re: Rebif & Elevated Liver Test

Hi Kelly. In my opinion, your doctor is being super cautious..maybe overly so.

Almost every one spikes in the first few months- usually in the first 3-6 months...and usually they repeat the test in about 90 days....and almost always, the enzymes turn out normal at that time...so no, most of us dont go off it.

If your doctor wants to repeat the test in less then 90 days, you should really talk to him and ask him if he is willing to stretch it out alittle bit. Is your doctor a MS specialist or a regular Neuro? He might have his reasons for wanting to repeat it so soon...but if you are doing well on rebif otherwise, its really up to you to make the decisions on what drug you are on- and up to you to roll the dice and see if those enzymes come back down. They more then likely will- however if they dont, then you arent a good candidate for Rebif. Only time will tell and its your choice to take a few more months and decide.

going from Rebif to Copaxone- youll also have to be off Rebif for at least 6 weeks before you can start another drug....another reason to push your doctor into letting you try this alittle longer, in my opinion. I was on Copaxone and had a horrible allergic reaction, which is why I was switched to Rebif. Im so glad that I was....I have been very happy with my Rebif experince.

But in the end, its up to you to TALK to your doctor. You might also call MS lifelines and ask their opinion- they can also call your doctor if you ask them to- get more info and also ask your doctor exactly what slightly means...he should be giving you a copy of the lab work anyway. You should keep those things for your records.

What you are going thru isnt unusual- however really high levels are dangerous...so find out what exactly you are dealing with and talk to some more Rebif professionals...and good luck. keep us posted, ok??
Nikki
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Last edited by MSNik; 01-20-2010 at 02:13 PM.

 
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Old 01-20-2010, 02:23 PM   #3
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CatLadyof2 HB User
Re: Rebif & Elevated Liver Test

Hi Kelly-

My liver enzymes came back elevated as well after the first test and I have to go back next week to have them rechecked.

When I mentioned this to my Lifelines nurse she told me that if this one still comes back elevated to talk to my doctor about dropping back down to the 22mcgs as an option.

Mary

 
Old 01-21-2010, 11:29 AM   #4
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teeth1992 HB User
Re: Rebif & Elevated Liver Test

I talked with the MS Lifelines nurse today and she couldn't believe the doctor told me that I would have to switch meds if my levels came back the same or higher. She said there is a need for action when the levels are 5 times the highest normal range (result of 200 or more). I called my neurologists office and had them fax me my results...my reading was 79 for the ALT test...normal being 10-40. My AST result was 59...with normal being < 34. I'm assuming both of these were tests of my liver since they were the 2 that read high.

I'm afraid to go back and have the test repeated for fear that maybe enough time hasn't gone by for my levels to drop back down (it's been 5 weeks since my first test). The MS nurse said there wasn't any protocol for testing intervals that it was at the discretion of the doctor! So I have to figure out what I'm going to do. Hopefully my levels drop back down...I've really had very little problem being on this drug and I really hope it is helping me!

Have a great day!
Kelly

 
Old 01-21-2010, 12:56 PM   #5
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Re: Rebif & Elevated Liver Test

Kelly. Be your own advocate. I know that those levels seem high, but in the grand scheme of things, they are only slightly elevated- exactly what your doctor told you. If you can put it off for another month- that should be enough time for a difference to be found. You can do it. Just dont go until then!

Your rebif nurse was right. Same thing I thought when I read your post- that your doctor is being overly worried. Maybe they can intervene on your behalf and call the doctor. You can certainly ask for a nurse to do so- happens all the time. The customer service person you spoke to was totally right in her repsonses, however you can call the same number and ask to speak to the nurse oncall- and get even further.

Good luck to you...dont sweat it. If you dont want to change meds, change doctors....no one can force you to change anything, and quite honestly, until you have been on Rebif for 6 months (at full dosage) you wont even know if its working...youl need an MRI to determine if it is, and that shouldnt be done until youve been on the drug at least 8 months or more...so be tough! Fight for what YOU want. It is about what you decide to do ...
Nikki
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