[Friend2U]

This if my first MS med, since I was just dx in Dec. Anyone on this medication?? If you could share your experience, I would greatly appreciate it.... not sure what to expect.

Thanks so much!

[FaithS]

I've had MS for 6 years; been dx for about 4 years. Started Betaseron 2 weeks after being diagnosed. It has always worked well for me at keeping new lesions away. It seemed to be less effective (for me) at decreasing the frequency and severity of flares. Therefore, I am currently on a double dose of Betaseron. My last flare much less sever than other flares. I attribute that to a combination of factors; I believe that one of those factors is very likely the double dose of Betaseron.

Here are some of the other things that I like about Betaseron:

Pros

• It's a high-dose, high-frequency interferon. Based on what I've read, what I've heard at NMSS patient seminars and my neuro's recommendations, I believe that's the best choice for me.
• It's a sub-Q shot; no injecting into the muscle. Has a small needle -- not a honkin' monster-needle like Avonex.
• I've heard that the Betaseron injection sting less than Rebif.
• Other than "cosmetic" site reactions (no pain, no bruising, no itching -- only red splotches), I, personally, don't have side effects
• It's every other day; no daily shots. (Not a big deal for me; I could live with daily shots.)
• I loved my auto-injector in the beginning. (I don't refer to it as my auto-inflictor, as some do; it was a life-saver for me -- made self-injecting much easier, until I decided I was comfortable enough to manually inject.)
• It comes pre-packaged and is also pretty quick to prepare and inject.
• Betaseron travels easier; no refrigeration required.
• You can sign up for MSPathways program, which offers the following benefits:

• They have an RN who specializes in MS and Betaseron who will give you free training to give your own injections, rather than just getting a Home Health nurse, or somebody who has just general knowledge about injections and MS. (I've often read of PwMS on one of the other CRABs who state that they seemed to know more during the training session than the training nurse! )
• You will be assigned an RN who will call you regularly to check on you and answer questions.
• You will have an opportunity to receive vouchers that will reimburse you for a part of the co-pays that your insurance requires you to pay.

Cons

• Well, a con about Betaseron is that I have to give myself a shot every other day. Duh! But, seriously, I have not personally experienced that Betaseron has any drawbacks that don't also apply to other CRABs.
• Some possible drawbacks include:
• Many people experience flu-like symptoms with any other the interferons. Copaxone wouldn't have that possible side effect. I'm not convinced, though, that Copaxone would be as effective for me as a high-dose/high-frequency interferon.
• There is some evidence of people developing possible problems with the liver on Betaseron and some of the other CRABs.
• There is some evidence that use Betaseron and some other CRABs may lead to your body developing anti-bodies to them.
• May experience site reactions, or necrosis.

~ Faith

[Friend2U]

Dear Faith,
Thank you for the response. I'm curious as to why you started Beta, as opposed to the other choices. My neuro said it was the most potent and from the number of lesions I am not in the beginning stages... probably have had for quite a few years. Looking back, I know he is right. Was it this way for you...? I don't mean to pry, but don't have anyone to talk to going through anything similary. This is still new to me. Sorry if I'm asking too much. THank you for your kindness

[FaithS]

Originally Posted by Friend2U

Dear Faith,
Thank you for the response. I'm curious as to why you started Beta, as opposed to the other choices. My neuro said it was the most potent and from the number of lesions I am not in the beginning stages... probably have had for quite a few years. Looking back, I know he is right. Was it this way for you...? I don't mean to pry, but don't have anyone to talk to going through anything similary. This is still new to me. Sorry if I'm asking too much. THank you for your kindness

Friend2U --

When my neuro finally confirmed MS (after many other possible dx, and after considering MS a possibility for a long time and MRI's finally confirming it), he told me, "It's a perfect time to be dx with MS." He meant that because there were two excellent workshops coming up in the area in the next two weeks with lots of good info about meds.

I attended both, and was convinced that a high-frequency, high-dose interferon was the way to go (Betaseron or Rebif). Betaseron sounded better to me for a number of reasons (less stinging/burning, no regrigeration, etc.), so I chose it. My neuro affirmed that B was a good choice for me.


First flare 01/2002; Dx with MS: 10/2003. Started Betaseron 11/03

About beginning stages, my first clue that anything was going on was a stroke-like incident, in which I lost the use of my left side. Was taken to hosp in middle of night via ambulance. Dx as probable stroke. Took 2-3 mths of rehabilitation to recover; used walker, etc. Was only 39 years old. Next flare 3 months later prompted a visit to Mayo clinic; dx as probable CNS Lupus. MS was considered both times, but not enough evidence to dx it yet. My neuro always said, "Lots of things mimic a stroke," and later, he said, "Lots of things mimic MS." He was careful not to dx it until he was sure.

You're not prying. It's nice to have someone to share about MS with. The only people that I know who have MS are my online friends.

~ Faith

[TheBeans]

A new Beta Babe!

I've been on Beta now for going on 5 years and the only problems I have with it are that I still get those red injection-site 'spots' that seem to take a long time to go away and I still get flu-like symptoms if I don't medicate after the shot. Not a big deal to me...some Tylenol or Aleve after the shot and I'm off to bed and good to go.

Your neuro will very probably have you do a blood lab every 6 months to keep an eye on your liver. Simple blood-draw.

[sherylp]

I started Betaseron in October 2007. I have a Beta Nurse who is very helpful and provided numerous tips for injecting.

I have only had a couple of the red site reactions, they do tend to last a while but not such a big deal. A few bruises, mostly in the arms but they didn't last long.

No flu-like symptoms but did premedicate for a few weeks until I was sure I didn't have any of those reactions. I did have some burning while injecting the first three months but no longer have that.

I chose Beta after the name was presented to me by my neuro's nurse. She didn't promote it necessarily but told me to research it and all the others. I decided Beta was the best choice for me after adding up all the pros and cons. You can see a chart at the National MS Society Site. My neuro will do blood work every three months to check on liver/thyroid function.

I also use the autoinjector because I do not care for needles and it's not so bad when you can't see it in the injector. Or so I tell myself.

Best of luck in your journey!

[Friend2U]

thanks so much... i want to visit more but no energy tonite. take care and we'll talk more...take care

[cjohnston]

i myself was on beta for two and a half months.I had injection site reactions and that was about it but I had to be taken off of it due to my white cell count dropped way below normal. So I was at risk to catch any kinds of flu or sicknesses. As wel as I had a major relapse in that time.

But I hope it works well for you-good luck

[Friend2U]

Originally Posted by cjohnston

i myself was on beta for two and a half months.I had injection site reactions and that was about it but I had to be taken off of it due to my white cell count dropped way below normal. So I was at risk to catch any kinds of flu or sicknesses. As wel as I had a major relapse in that time.

But I hope it works well for you-good luck

So did they think, then, that the Beta had caused the drop in white cells?

My doc took me off the Beta a couple of weeks ago, possibly temporarily. But I was feeling VERY light headed, like I could pass out.... even just sitting part of the time. And walking was so hard, I was feeling so weak like I would just faint. This started happening not long after I got to the full dose. Time will tell, I guess. I still am feeling faint, but perhaps not as often.

Do you, or does anyone know, can ms actually cause you to feel so lightheaded you can pass out? I seem to have the burning sensation along with the light headedness. But as I stated in another thread, I am also having gallbladder issues. So I don't know what is what!


THanks for your response!