Betaseron

[Jnkey3]

I'm newly diagnosed.. I was technically diagnosed last Thursday. I will starting betaseron soon. My meds will be in on Tuesday. I was told by the betaseron nurse that my symptoms probably won't get better on the meds... They just won't get worse... I was wondering what experiences some of you have had on betaseron. Thanks for all info!
Jaime

[22cyclist]

JNKEY3: Check on the Betaseron board, on the medications section. Those guys can give you more insight.

Lisa

[MsGymRat]

My experience

I am new to Betaseron too. I have only been on it aboutvtwo months. My symptoms did not improve. I just finally made it to the full dose about ten days ago.

I overdid it in the gym earlier in the week after a B12 shot. The back of my thighs felt tingly for about 24 hours. My vision was blurry too.

Now I have a sore throat I caught from my kids. And my vision is blurry again.

I don't think I'm having a true flare up though. It's just that I had a bad week...

I think we have to wait for our next MRI to see if the Betaseron is helping us. The purpose if it is to change the course of the illness. If on our next MRI there are no new lesions we can say yes it has helped us.

I'm so new to this. Others might have more info.

[Toomnyhats]

No, your sx won't improve on any DMD. The purpose of DMD is to hopefully slow the progression of this MonSter.

My best advice is do what the nurse tells you to do! Pre-medicating is important, at least until you see how your body reacts to this drug. Be familiar with common side-effects but remember not everyone gets all, or even some, of these. Each person reacts differently.

Don't hesitate to ask questions - I'm by no means an expert, but I have had some unusual, interesting, uncommon side-effects

[rdmc]

I'm newly diagnosed.. I was technically diagnosed last Thursday. I will starting betaseron soon. My meds will be in on Tuesday. I was told by the betaseron nurse that my symptoms probably won't get better on the meds... They just won't get worse... I was wondering what experiences some of you have had on betaseron. Thanks for all info!
Jaime

I used Betaseron for about 8 years. Betaseron, in and of itself, won't get rid of your symptoms (for symptoms there are symptomatic meds, like anti-spasticity drugs for spasticity, anti-epileptic drugs if you have sensory symptoms, etc.)

I, personally, did not have any side effects from Betaseron for a very long time. The last year I used it, for some reason, I started getting the side effects that everyone else complains about in the beginning...so go figure.

As far as not letting your symptoms get worse...that's not a totally true answer. What the meds like Betaseron do is slow down progression and lower the number of exacerbations. Theory being that less exacerbations means less damage, means less symptoms. But the success rate is something like 33%, meaning that if a "normal" person might experience 3 exacerbations a year, with Beta, they'd only have 2.

All those statistics don't mean too much because MS is such an individual disease, and everyone has a different disease course. So you might be one of the "super responders" and not have an exacerbation for years due to your Beta use.

Hope you do well with your injections. Come to the board and ask questions. Many folks manually inject, other folks use the autoinject. Some people get site reactions (your injection site gets red and itchy, some folks don't.) All that to say you'll have your own Betaseron story to tell once you've been on the drug awhile.

[FL_Jhawk]

The latest study on Beta shows that while it may reduce the number of lesions, it does not stop the time to disability. That is, when compared to people who use it to those who didn't use a DMD, both progressed to disability (wheel chair) in essentially the same length of time.

Based on that, I stopped taking it and am waiting for BG12. In the meantime, I do the LDN.

[kelly k]

Registered Member

I have been on Betaseron for six years. I still have to use advil or tylenol before I do my injection. If I don't, I feel like I have a fever and the flu. As long as I do, everything is ok. I still get red marks where I do the injection though. I hope things go well for you!

[wolffe]

Jaime I've been on Baterson for over ten years and it held me at bay with no sx. Last six months I started to decline so my Dr. have me stop it last Monday, I have to be off it for 30 days before I start Ty.
Good Luck