Need some feedback

A board to discuss the Multiple Sclerosis modifying drug Rebif

Need some feedback

Postby tubajim » Sun Aug 29, 2010 8:26 am

Hi to all - hope to not make this too long - so much on my mind 24/7.

WM 47 dx in mid July - Rebif suggested - and I got going ASAP. Starting week 6 - finished titration - no HUGE side effects so far. Shots seem easy so far. Adjusting meds and timing. May have been having a symptom or two off and on for a few years. Last two years were real stressors - more consistent symptoms bugging me last 12 months. Finally broke down and saw my PC in May after school was done - first time in 3 years. First thing was BP - addressed immediately. Some symptoms persisted so an immediate referral down the hall to neuro.

MRI LP and my overall presentation confirm MS. The list I took in now reads to me like a MS checklist - all tests done to exclude other things. He treats a lot of MS and I think he is on the level with me. Asked about end stage and he was completely honest - scary as hell! Says that stage is rarely the case and that we are just at the start of this - but I do read heartbreaking accounts. My age, gender, time to DX from first minor symptoms - all combine to give me a rather gloomy outlook on this.

Nobody has answers for sure but would like to hear from others. I know Rebif doesnt fix or stop the MS. Also zero to six significant meds in the last 2 months - contributes to some of this mental stuff. Would love to hear from anybody - especially similar circumstances - what do I do now that I am doing all asked by Drs? Week to week is hard when day to day is so consumed. I go to bed with some hope for a decent day and wake up - when I can sleep - with tremendous apprehension - fear - worry.

I live alone - pros and cons - but I do want to live. I am so consumed with the worst case scenario - I DONT WANT TO CRASH IN FRONT OF MY FATHER. I also want to do well for ME. So here I am asking other Rebif people for advice/feedback. I feel worse than I function by a long shot - many things to be thankful for. Job, Ins, little appt and a nice cat. Dad is supportive - 500 miles away and 76. He has had enough to deal with in his life without me raining on his parade. I wonder if DX stress/worry havent made some things stick out at me more. I knew I was tired - but understanding clinical fatigue certainly brings it to the front. And - I am wiped out - maybe adjusting to all the meds. But I feel weaker in my core - could also be the time sitting around. Trying to save all I have to be awake and human teaching classes. Caught somewhere between passing out and not being able to sleep. Adjusting timing of Rebif to AM while keeping Provigil and Temapazam more separated. Havent been hungry in two months - but I had some extra on me.

At worst - I cant do anything about the course that is marked for me. The fast crash is a real worry. At best I can adjust the curve of the disease - if I got there in time and I am one of the folks Rebif helps.
Getting through the next days, weeks, is going to be something - I hope to figure it out and do the best I can.

So - it was TOO long and maybe this is more emotionally charged than comportable for this group. If so I apologize - but any feedback or advice would be appreciated. I am committed to trying the Rebif - and I know it has barely gotten into my system and that feeling better involves healing. That doesnt come from Rebif. Very happy with the service from Pharmacy and MSLifelines folks - hoping the therapy is somewhere near as effective - if I got there in time...

Jim
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Postby flautenmusik » Sun Aug 29, 2010 11:40 am

Hi Jim,

I have been on Rebif for almost 2 years now. While I am not sure how much it is helping my MS, I am not willing to try it without. I also firmly believe in diet and exercise as a huge must for MS patients. I strictly follow the Swank Diet, and I have honestly been doing great.

We all have felt the same way as you, so feel free to vent all that you need.

Jennifer

PS - Are you a tuba player? My dad plays tuba and I'm a professional flutist.
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Postby Bubba » Sun Aug 29, 2010 4:38 pm

flautenmusik wrote:Hi Jim,

I have been on Rebif for almost 2 years now. While I am not sure how much it is helping my MS, I am not willing to try it without. I also firmly believe in diet and exercise as a huge must for MS patients.

We all have felt the same way as you, so feel free to vent all that you need.



Well said!!!!!!!!!
Excersize for the fatigue. Time to help with the worry, we've all been there, and quite frankly, still there, just know how to deal with it now.
As far as diet goes, I TRY to follow a low carb diet; with this difference, I like beer.
Time, Faith and excersize will help with sleeping, energy, and stress.
w/m 44
The problem comes with the decision of weighing the unknown with the unknown.
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Postby carolsue » Mon Aug 30, 2010 10:22 pm

I do believe knowledge is power but it's way too easy to get mired in the information, esp. re. prognosis. Now that you've done the research and heard whatever the gloomy news is, my suggestion is STOP READING. If you want to read something, look at dietary regimens, and supplement suggestions by jimmylegs on this site. Become an A student in Wellness 101. Yes, exercise! Yes, eat right! Yes, power through the fatigue. I felt the fatigue for the first few months after my diagnosis and very very rarely feel it now. I've been on Rebif for 6 years. I tried Provigil and once or twice thought it helped but am not so sure it did. I think the diagnosis itself was emotionally fatiguing for me. Once I processed that, I think I started doing much better with the energy and fatigue.

As the flute player says, we've all been there and you are welcome/encouraged to vent here. I remind myself that we've all handled what's been thrown at us. You will too.

Best to you.
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Postby Bubba » Tue Aug 31, 2010 5:49 pm

carolsue wrote: I think the diagnosis itself was emotionally fatiguing for me. Once I processed that, I think I started doing much better with the energy and fatigue.




Again.... Well said words of wisdom. I was thinking that but didn't know how to put it into words.
w/m 44
The problem comes with the decision of weighing the unknown with the unknown.
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Thank you

Postby tubajim » Tue Aug 31, 2010 6:06 pm

Thanks to all - on Mon my neuro told me to give Rebif two week break as my sleep patterns have been - nonexistent. I also was pretty down and not feeling good - so maybe my reactions were less visible - except to him.

I really like the Rebif for convenience and ease of application - but depression is an known element of mine - hoping that I get it together and can resume. Lots of new meds, stress of DX just like all of you, way too much research and worrying. Working to get my stuff together but I have had nights of no sleep and little sleep even with Temazepam. I will do what he asks but man Rebif was easy to do! I will try to get my stuff together and be a good candidate for this - now I feel like Im doing nothing. Assures me that we are just at the beginning and that a two week break will help identify if it an issue with interferon or something else. Doesnt think it is all related to the MS. He is a good guy and very smart - does treat a lot of MS and has had to try this tactic before.


tubaim
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Postby msdragonslayer » Sat Dec 11, 2010 5:10 pm

These drugs don't seem to really help anyone but the drug companies. I refused to take them and have not been sorry. My former neurologist has been acting like a child - name calling people who question his drug pushing ways. Have heard of and met several who have gotten a good deal of relief with the CCSVI treatment. Until I can afford it or until it comes to Canada, I am taking enzymes and vitamins that are helping a bit. The days of doctors prescribing because their drugs are valuable to the patient are gone. You really must question what, why etc every time they haul out their prescription pad.Chances are better than good that somebody is paying them to market those drugs.That's my opinion anyway.
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