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Rebif experience


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Old 11-07-2010, 03:55 PM   #1
tubajim
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Rebif experience

Week 12 or so with Rebif. NO OVERT SPECTACULAR REACTIONS. For those who use this or similar product do you experience additional fatigue? More or less than prior to treatment? Does it "feel the same" as a bad MS patch? No big emergency.

Trying to carefully learn what is related to MS and what "may" be a side effect for me. Also, for those who may have experienced some down/blues/depression did this peak after a particular period on treatment? This is all so individual... just seeking experiences of others. MS fatigue VS treatment fatigue - (if that even exists).

Treatment regimen is very easy and I am compliant in all aspects with this drug. Cooler weather has certainly helped and making it through a couple months of work has given some needed confidence. My strength is not very deep but peaks are nearly "OK". At this point I would not switch to an oral med unless directed by my neurologist - and he is biding his (our) time. Needles or pills are not as important to me as efficacy.

Any observations about Rebif (or other interferon) use at 3-6 months are appreciated. NO site reaction, no fever, nothing spectacular - just trying to sort out a few things.

Tubajim

 
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Old 11-08-2010, 06:26 PM   #2
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Re: Rebif experience

Can not help with the med route, but I would recommend that you keep a journal and review it with your prescribing doctor. They can best assist you in sorting out what is a side effect and what is MS.

Hope your classroom teaching is running smoothly.
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Old 11-08-2010, 07:41 PM   #3
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Re: Rebif experience

Jim,
Fabulous news!!! Im happy to hear things are going well for you. As you know, I love my Rebif and have been on it almost 4 years. BUT, I can honstly say, youve had an easier time of getting used to it then I had...I had some severe reactions the first 2-3 months...then, it all leveled out and not one reaction since...

Addressing your concerns, I have never really had much fatigue FROM the drug, but have been experiencing fatigue off and on for the past few months. You dont suppose working 50+ hours a week and grad school might be contributing factors do you? Hard to really say which is the drug, which is the disease, and which is self imposed. I do think that changes in weather, although the cooler weather seems to agree with MOST of us , can also bring on fatigue. Add into that that it is getting darker earlier, and we get all messed up! Fatigue doesnt seem to be completely related to temperature, but possibly more related to changes in the seasons for me....I have also noticed that the first 6 months of Rebif were not exactly the same as they have been for the past 4+ years. As time went on, I started noticing that I actually get bursts of energy from Rebif....to this day, I feel great about 2 hours after I inject and it seems to last throughout the day for me. If I do my shot at night, forget it. I dont sleep!

One of the things you might want to start thinking about is your blood levels for liver issues. About this time, your Neuro should be checking liver enzymes every 3-5 months...they do this the first year, and then twice a year, and then once a year from thereout....its VERY NORMAL to have a spike in Liver Enzymes the first few months on Rebif...and then they normalize. Do not let it freak you out if it happens...normally, it happens and then within the month, they level out again. You can actually have high enzyme counts for up to 6 months before it does damage, and its the NORM to keep on the Rebif for another month or 6 weeks, only to repeat the blood levels at that time. On almost all cases, the enzyme levels come back down. This is something that you want to ask your doctor about. If he tells you to get off the Rebif (if it happens) have HIM call MSLIfeLINES..the new protocol is NOT to stop the drug....

I think you are doing amazingly well and adjusting to this new period in your life like a pro! Keep on doing what your doing~! As for the newer oral meds, Im not seeing any Neuros who are jumping on that wagon yet...most want another year or two of seeing results from patients before they prescribe it...but Im also not seeing anyone I know who is willing to start the oral therapy, no one who has seen the side effects would be that interested in going from "fine" to "questionable" in my opinion...the side effects on the newer drug are still in the questionable stage...time will tell...

In the meantime, Kudos to you! Keep up the good work and hang in there...when you have your first MRI after being on Rebif (probably at least the 6 month from starting the 44mcg mark) youll have better answers. NO new lesions means your good to go! ~~ By the way, on that note, my 3rd month on Rebif, I had a bad case of Optical Neuritis, followed by a complete relapse including IVSM for 5 days..I was SURE that the drug wasnt working and that they were going to pull me off it.....my doctor told me to hang tough, stay on it, and at 7 months they MRId me. At that point, the ON was cleared up, I was feeling great and was completely used to the injections and the drug....I had no new lesions and actually had lessened a few which previously were active. I started out with over 50 lesions on my brain. I stayed on it, never had another relapse since. Remember, its 6 months from when you hit full dosage that the drug is really working for you....until then, its still building up in your blood stream...

I go for my 4 year MRI and exam at the end of November...Im hoping to be able to say all is well....and I have every reason to think it is...but Ill keep you posted. Ask whatever specific questions you have...we Rebifers have to stick together!
Nikki
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Last edited by MSNik; 11-08-2010 at 07:43 PM.

 
Old 11-08-2010, 08:21 PM   #4
tubajim
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Re: Rebif experience

Thanks for great perspectives and solid advice all around. It certainly is better to be talking about QUALITY of function rather than "can I do it at all?". SAD has come to mind so I am thinking about adding D (I dont take anything) and try to move well, often, carefully, rest regularly and often. Can do manual or auto inject easily - caps dont want to come off syringes sometimes. I dont feel "great" this week but much better than the heat/shock of Summer DX/RX.

Tuba playing not "alien" - but I relatively "suck"... hiding behind my shield as much as possible! HEY it doesnt feel like LEAD now! Flu shot, BP down, tonnage down, not a peep about my liver...yet, last two deliveries TO MY OFFICE! Classes are competent and reasonable for the students, no unplanned misses so far.
DX/RX. We are at the stage where my business is really well contained by my "needed colleagues and friends" BUT many wonder (quietly) "whats with Jim?". Of one more person asks me for the secret for losing all that weight - I MIGHT JUST TELL THEM! No... I will watch, listen, learn, monitor MS stuff periodically, note how I feel and COMPLY. You guys help people all the time - I see it. So the holidays are coming... (serenity now, serenity now...).

Tubajim

 
Old 11-08-2010, 08:57 PM   #5
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Re: Rebif experience

Jim
always remember that this is a personal thing, and whom you share it with, or what you decide to say, is totally up to you. It gets easier as time goes on. No one judges, but then again, no one truly understands this disease until they have walked a mile in your shoes.

Think of all the accomplishments you mentioned! Especially the weight issue! You have only yourself to thank for that! Be proud and be strong...this is nothing you cant manage...its only MS. It could always be worse!

Do something nice for yourself this holiday season. Buy yourself a present, go see an old friend and surprise them with the new you. But always, Always, hold your head up and dont let the unknowns get you down. Concentrate on the here and now....the rest is as under control as you make it. Your doing everything right! Know it and be proud of yourself!

Nikki
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