betaseron ms

m not on betaseron, but am glad to hear you are making a change to see if you can find a combination to slow your MS. Getting the new MRI done on the stronger machine is so important for your baseline... it will give your new neuro a good view as to where you are coming from. And you're right, it might show where you have new damage that is causing your changes.

I went off because the goofy MS doctor told me to go off because he wanted to see if I develop any more lesions. He said he was going to do another MRI in 6 months. I decided to start it back up because my eyes are starting to hurt again and I am very sure I do not like the idea of stopping it just to see if any more lesions show up.

I have had a letter today to say that I am being switched from Betaseron to Extavia, the letter says the drug is identical. I trust you guys much more than our NHS. Is it identical? I have been on Betaseron for 2 years with no side effects and am happy with it. Obviously with the NHS I have no choice about the change. Any insight would be greatly appreciated.

It always improved things previously when I had an attack (before I went on Betaseron). I had not had an MS attack ever since I had been on the Betaseron and then suddenly I'm having this severe an attack just after I fall down the stairs? It really doesn't make sense to me.

Why did you go off of your Betaseron? Did your neurologist suggest this? There's no such thing as benign MS. MS is so unpredictable that it can turn on a dime into something aggressive, or you can experience relief from attacks for years (like for you). I don't think anyone knows why this happens for people this way. Maybe the Betaseron was keeping you from experiencing attacks. The purpose of the medicine is to just that.

Hard to answer your question without more information. Why do you have only those four choices? Avonex (which I’ve used for 11 years) and others are notably absent from your list. Avonex, Rebif, and Betaseron have been around longest and have the strongest safety profiles. If your MS is more aggressive, then you may be more inclined to consider Gilenya, Tecfidera, Aubagio, or Tysabri. All of the DMDs are discussed from a neutral perspective at the link below: http://www.nationalmssociety.

Unfortunately, none of our currently FDA approved medications have demonstrated that they work in such advanced MS. Did the Betaseron help you recently (there is a $50 maximum copay program)? Rituximab may be an option for you (off-label) and you can speak to your neurologist about it. Some people would suggest trying Copaxone because of the limited data from their Primary Progressive MS (PPMS) trial. Fingolimod (FTY720) is entering trials for PPMS and you may want to see if you qualify.

Both medicines you list have strong safety profiles and stood the test of time (although the Extavia brand is newer, but I believe is is the same as Betaseron), as have a few other medicines you don’t list. And you can always change your mind later, although you should give a drug at least a few months to work. And yes, there’s a chance it might not work out for you, but MS progression definitely won’t work out for you, and so you are right to try to attack your MS with something.

I saw on your other post the mention that they want you to take Rebif instead. Be sure that your neuro is fine with that - they are both interferons and work the same way.

Wife if is doing well with her ms....me not so much. Starting betaseron in a couple weeks . Everybody told me I HAD to get another opinion....so I did. Told me the same things my original neuro told me and wanted an LP. Didn't like dr and not going back but did the LP to apease my family (will never ever ever have another one).

at first it was just like spotting but now its aot like a period (as of today). I am on betaseron and I didn't know if it could mess with your period like tha or make your breasts sore.. (fatigue is a normal ms symptom tho so that doesn't concern me except its been worse lately). Plus.. I have been noticing that its harder for me 2 hold it when I have to pee and smetimes it leaks (which again could be ms related). I'm just worried and really can't do a test yet..

He said that he believes in a higher dose - high frequency shot....either rebif or betaseron. His preference is betaseron....ultimately more meds being injected than Rebif, and much lower instances of injection site problems. The negative is slightly higher chance of antibodies being built up. The efficacy is about the same. So the MS specialist said Betaseron and we now have a box of the stuff sitting on our kitchen table. How did you end up with Rebif?

I'm not DX with MS, however from what I understand the DMD'S can't stop the progression of MS, however it may slow down the MS.

Well, the neuro just called, he said "Good news, negative LP, you dont have MS". What an idiot. We argued, well, I did, he couldnt take it. I told him a ngative LP means nothing, he mumbled something,,,,,,who knows. I lost it then, about the part where he told me since I was on Betaseron last year (only for about 6 mos), he said since it didnt help me then, thats more proof I dont have MS. Um, DUH, it made me feel like I had terminal flu sx!

When I had an allergic reaction to Copaxone after being on it for a couple of years I went on Betaseron. Now, for a couple of years, I've been having strange feelings with my heart - the fluttering associated with Afib, slight pressure, thudding beats I can feel, especially at night when I lie down to go to sleep. My doctor says to put up with it, but it scares me with the bad heart history in my family. Has anyone experienced this and what did you do?

I do indeed have MS per the MS specialist. Oh, and he even told me that a negative LP does NOT rule out MS. While I'm not excited about the news (who would be) I am relieved to finally know for sure. I also found out I had deficits in areas that I didn't realize. I guess I've been compensating for them. I'm also not sure I would have been scheduled for cognitive testing until I totally lost my train of thought while speaking to him....more than once......lol.

I started it in July of this year after giving Betaseron a try. My life became a living h*ll on Betaseron. It was definitely not the drug for me. My doctor went over all of my options, but at that point trying another shot was not going to happen. Ty I would never even consider since I have children to raise. Anyway, I knew going into the appt that I wanted to try LDN and was prepared for a fight to get an RX for it.

The specialist at UCSF is switching me to Tysabri and has told me to go ahead and stop my Betaseron. It has now been 2 shots that I missed (well didn't take) and for the past 2 days I have been feeling like someone beat the crud outta me. My husband is insisting it is cuz I am not taking my shots. I don't see how that can be. We went to UCSF Monday night (4 hr drive), had my Dr appt Tues which took 4 hrs.

After my fifth IPIR, which had characteristics of also being an allergic reaction (no consensus on that one) I switched to Betaseron. Aside from the obvious negatives (needs a blood test every few months, lowers your immune system) I like it - there's no reaction at the injection site, and there's no lipoatrophy.

As we put the final touches on this research project, I continue to find snippets of information that make me gasp - here's a link to the latest one ---- this group analyzed the cost of MS care and DMD drug costs. We have heard the numbers before, but to see it in print is mind-boggling. http://tinyurl.

Pretty much said I wouldnt be sitting there looking like this if I had been on meds (not sure that that is entirley true only a 30% chance in my opinion) She gave me the option of another med covered by my health insurance which is Betaseron. Gave me the CD to watch and sent RX to pharmacy. Of course I come home and read all teh possible side effects and its making me want to do nothing now. I am so med paranoid (and Im a Nurse for Pete's sake!

I started on betaseron (betaferon here in UK) 2 weeks ago, so have so far injected 7 times. On nearly all the injection sites I have a slightly raised red area, approx 1 1/2 - 2 centimetres in diameter, not at all itchy or bothersome in any way. Where I did the first 2 injections I now only have very small marks, more like tiny bruises. I suppose I am looking for someone to tell me it is ok to ignore this. I don't want to go to the doc or MS nurse and risk the drug being stopped.

I'm on copaxone. I have to do a really small dose on my legs because with a full dose, I get lumps the size of softballs! I try to hang in there. Sometimes I give up and skip a week or 2 just to give my poor legs a rest. What was your reaction to copaxone? Having lupus, I can't do any of the interferons. My rheumie said with lupus my body makes interferon. My neuro suggested methotrexate, but that won't do because of my kidneys. Then he suggested tysabri.

Hi Everyone, I was diagnosed with ms about 3 weeks ago. I started having issues in December at first my eye lids would not open. I was diagnosed with Myasthenia Gravis and given meds and sent on my way. I never responded to the meds and after about 4 weeks my eyes finally did open on their own. Then i noticed that my left eye looked strange and my vision was terrible. I was also constantly tired, dizzy and unable to concentrate.

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