@mari365

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mari365

Betaferon

Hi all, Very newbie post but I'm very new to all of this, just diagnosed 3 weeks ago. Still trying to get my head around the whole thing. I have decided to start medication and have gone with Betaferon. I'm starting tomorrow and was just wondering if anyone else has used it and what sort of experience am I in for? I know the medications affect everyone differently and I know I won't get a full dose tomorrow but I suppose I feel like I'm not really sure what I'm letting myself in for. Am I going to just take this injection and get on with the rest of my day or am I going to be in bed with flu symptoms for the rest of the week? Thanks :)

Stumbler

@Stumbler

Hi @mari365 and welcome. You are a very newbie, aren't you? I do hope that you're taking things easy and spending a bit of time finding out what MS means to you. You must be, as you've found us. The MS Trust is a good place to go for information. Check out the "newly diagnosed" section of this website, https://support.mstrust.org.uk/shop . As for you question about Betaferon, yes, it can give you flu-like symptoms, shortly after the shot. I was on it for 5 years and at the start and occasionally thereafter, I used to get the flu-like symptoms. I used to take the shot at 19:00-20:00 and just used to go to bed if I felt the "chills" coming on. I used to be alright the following morning. And, I was taking the medication every other day! So, it will be a case of finding a schedule that works for you, assisted by Ibuprofen and Paracetamol, where necessary. Just take your time with it and good luck.

mari365

@mari365

Thanks for your reply. I've tried to find as much reliable info online as I cam (I've found a LOT of unreliable info around) but I'm not really sure what else I should be doing. I was diagnosed and back in work the next day, I'm not sure I was medically prescribed any time to adapt to this situation. It's sort of like "ok you have multiple sclerosis now let me know what medication you want, bye". Some days I feel like there's no reason for me to even spend time thinking about this and others I feel like I need to just be left on my own for a week to accept this. I've struggled with my mood a lot of the last 3 years. I've been inexplicably depressed or upset or irritable for a long time now, I don't want to go out at night, I just want to go to bed. 5 years ago I was out every night of the week so at least now I can pin that change to multiple sclerosis. I have lost feel in my arm and in random parts of my body like my stomach and back but I think that's easier to deal with than the emotional upsets I've been feeling. Are these all the normal feelings of someone newly diagnosed? I don't really know what I should think or feel

Stumbler

@Stumbler

There is reliable information available on the internet, but you need to avoid "Dr. Google". Stick to creditable websites like the MS Trust and MS Society. Or ask here. You might want to contact the MS Society in Ireland and see what help they can offer you. http://ms-society.ie/home . Generally, it was felt that there was a lack of support for the younger MSer, which is why Shift.MS was conceived. You just need time to take this all in and understand what it means to you. Basically, MS is now a manageable condition. Medical Science has moved forward and there are now a range of medications to assist. But, a diagnosis of MS is a shock to the system. It sets you off on a rollercoaster ride of varying emotions, which are determined by the following phases :- 1. Shock and Denial 2. Pain and Guilt 3. Anger and Bargaining 4. Depression, reflection, loneliness 5. The upward turn 6. Reconstruction and working through 7. Acceptance and hope You can probably see where you are and where you've been. But, we all hope to attain acceptance, when we can then move on. So, don't rush yourself, look after yourself and try to follow a healthy lifestyle. And, do try and avoid stress, which has been seen to be a major agitator of MS.

Sewing-chick

@Sewing-chick

MS is now (possibly) a curable condition. If you are given the right drug, early in the disease there is a good chance that you will not have any more relapses, that any impairment you already have (including tiredness) will disappear over time and that you will be exactly the same as any person who has never been diagnosed with MS. But you need to get the right drug, and soon. The one that is given out a lot is Lemtrada - you will see lots of people describing their experience of having this on here. It is the drug that has changed everything for people newly diagnosed with MS. The doctor who worked on it was given a knighthood six months ago - no surprise there. I have taken Cladribine - I believe it is as good as Lemtrada, better in some ways but a lot harder to get hold off. Betaferon will reduce the number of relapses you have and may slow down progression a bit, although some scientific studies suggest it doesn't slow progression at all. Lemtrada or Cladribine have a good chance of stopping your MS. I wish they had been available when I was diagnosed - I think my life would be different now if they had been. I hope you will find out about them and take one of them. Good luck.

slockha2

@slockha2

Hi, I've been on Betaferon for a year although will be swapping to Tecfidera in a couple of months. Flu type symptoms are common, they totally wiped me out for 10 days but then happily were gone. I also had some big injection site reactions which took longer to die down. All in all though it was just a rough couple of weeks and then things were back to normal. Good luck!

Martin83

@Martin83

Hi! I've been taking interferon beta-1b (Betaferon/Extavia) for 10 years. The flu symptoms are manageable for me, I get them now and then but a paracetamol usually does the trick and removes them. The symptoms were more frequent the first months, but the last years it's been maybe once every other month. Good luck!