Scared - any advice?

A board to discuss the Multiple Sclerosis modifying drug Betaseron

Scared - any advice?

Postby surfbird » Sun Aug 29, 2010 11:08 pm

I am submitting my application tomorrow to start Betaseron. My doctor said I technically have CIS but since I am at such a high risk for developing MS, he really encourages my to begin therapy ASAP, as did the other neurologists I consulted with to confirm the test results.

I was stuck between Copaxone vs Betaseron and decided I'd rather try my luck with flu-like symptoms than risk permanent damage to my body w/ lipoatrophy. It sounds so vain, but it's just how I feel. If the Betaseron side-effects are too strong, I can always switch and know I at least tried something else first.

I'd love to hear any advice/tips anyone has for someone starting injection therapy. I'm scared of the side effects (needles aren't my favorite but I think I'll be OK with that regard) and worried about how I'll incorporate something like this into my life. I had dreams of quitting my job and traveling and now I feel so stuck...I have the savings to travel BUT not to live without health insurance, and now I feel like I have no choice but to stay on insurance, especially if I'm taking drugs that cost upwards of $2500/month. OMG.
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Postby Diane1949 » Tue Aug 31, 2010 12:32 pm

I think if you go with Betaseron and have insurance, your copay will be covered by Betaplus. I stopped Copaxone because of what it did to my skin and don't mind Betaseron injections that I have been taking for several years. I hope you will keep your dreams and plans!
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Postby Sawdoggie » Wed Sep 01, 2010 12:13 pm

I have been on Betaseron for the past 15 months (dx'd April '09) and really have not had any of the side effects. I was in the same boat, the neuro was concerned due to the number of lesions, o-bands, etc. that I had and felt that I was high risk for a relapse. The only side effect, if you want to call it that, is that I get red blotches on my stomach where I inject that last a couple of days. The needle is tiny and the whole thing only takes a few minutes and is relatively pain free. I understand your feeling about being trapped with health insurance, this stuff is ridiculously priced. I don't know if it does anything, I haven't relapsed since my first and only "in your face episode" in March '09. Maybe this is the Beta, the natural course, that I brought my Vit D up to normal levels from next to nothing, the grape seed extract or phleobotomy, or all of the above, who knows. Whatever it is, I'll take it!
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Postby Slumby » Mon Jan 31, 2011 6:15 pm

Sawdoggie wrote:Whatever it is, I'll take it!


I think of this often as I go into starting betaseron.
I can still try natural approach things while taking an injectible...
I'm scared, as there is hardly any fat on my body, but I figure that after a while, it'll be no big deal. I hope it won't be a waste of time. :?

PS Liz, how are you doing?
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Re: Scared - any advice?

Postby suestory56 » Mon Mar 05, 2012 9:41 pm

I to take Betaseron until my diagnosis changed to Socondary Progressive. At that point, I stopped taking anything. Still have MS but have stopped getting worse. Always left me wondering what the drugs really do.
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Re: Scared - any advice?

Postby PW5751 » Wed Mar 21, 2012 6:25 am

Read all you can on CCSVI. My wife who has had MS since 1979 had the treatment done in Dayton, Ohio...it works!
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Re: Scared - any advice?

Postby SoloMojo » Wed Jan 02, 2013 5:22 am

I was symptomatic in 1992 after the shots in the Army. Of course you will never get anyone to say it was the shots but have met loads of soldiers like me that had the same thing happen and they have been diagnosed with all kinds of auto-immune conditions. I was put on Beta Seron in 1998 and stopped it in 2010. I was severely depressed and almost found a tree i liked, at 80mph. I think the Beta Seron helped at first but all the side affects really took over in me, I am lucky I feel not to have any organ damage from such a long time in use. Just keep track of your testosterone for men and estrogen for women. The Beta Seron allowed my testosterone to slowly be beaten down to 120 out of 1000! I was a 70 yo man with no doctors that wanted to do anything about it. I am on hormone replacements now, I am like I was in the Army before the MS ever appeared. I can not say it would help everyone, but I know after having been in the basement health wise for over 10 years with know-it-all doctors watching on, that the numbness, depression, weakness, stammering in gate and speech, and cognitive dullness are all leaving, really all I have left that I can say I still feel is the numbness and the IBS, both tho have really improved. The MS society in 2007 helped sponsor research that showed big benefits to hormone treatments, the UK actually uses it. Altho the research was promicing and was deemed to be followed up into PHASE II and III, no one in the States I can find did. Not much $$$$ in hormone treatments, not like Interferon drugs for sure. I sounded the charge to doctors for 7 years that I needed testtosterone help before I found a GP that also knew how to use hormones. I am not cured, but you could not tell by looking and watching me these days. Get your hormones tested every year, it's you engine oil and if you let it go down, you are weak and easily made sick.

http://www.medicalnewstoday.com/releases/70932.php
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Re: Scared - any advice?

Postby Slumby » Sat Oct 19, 2013 9:41 pm

My advice...if you decide to quit, titrate DOWN.
[14mg aubagio]
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