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Hello everyone,

I would like to hear what you think about my Betaferon medication. I started Betaferon medication 5 weeks ago (I was diagnosed with RRMS in June). Not much side effects from it, just injection side reactions, headaches, fever and tiredness, but manageable. I also started taking Vit. D and B and Omega 3, around 3 weeks ago. No mayor diet changes, but I am a vegetarian for 13 years or so, and have a fairly healthy and low fat diet. I also started yoga, do a lot of walking as well with my dog, and trying to do more walking these days. I still have some exercises from me physiotherapist for my balance which I try to do regurly as well.

But in the last few weeks, and especially the last 3 weeks, my feelings got worse and worse (and the dose of Betaferon higher and higher). I was getting so anxious, panic, sad, anxiety, confused about my life, couldn't see a future anymore at all or think straight, couldn't distract myself, at one stage thinking about how you can commit suicide. It also became physical, with a feeling of pressure on my chest, being very hot, needing fresh air (I had this before when I'm worried about things). I was just doing very bad so ended up with Xanax (7 days, 3 times a day) to calm me down.

I was on Xanax for a week and now we have to see how it goes. If the anxiety and everything is still there, it's not to do with the Betaferon said the nurse. If it's gone, I might need to switch to other medication (Copaxone). The neurologist prefers me to have the Betaferon, as this is quicker working and needed she thinks, after she saw my MRI's.

The strange thing I find is that it's not even really the part of having MS that's making me feel so bad, just all the other things that happened in my life. I started counselling in January to deal with issues and a lot of issues came up recently in the last few weeks, and that's the stuff that gets me so anxious or sad or worrying now. I also have a history with depression.

But is it the medication that made this all just ridiciously worse, or is it me? Anyone any experience with this? I will follow up with my GP and MS nurse, but I was curious about what you guys think.

Just to say: I am feeling a bit better now. The Xanax calmed me down a lot and I talked to my counsellor. I took no Xanax yesterday evening, but was feeling worse again (shaking, heart racing, sadness for no reason) this morning so I split my last pill in half and took that and that calmed me down. My husband says the Xanax only calms me down, and does not make my thoughts more positive and I was feeling a bit better in the last week. Smiling again, seeing a future (small steps though!). I'm walking a lot which seems to help sometimes, and try to distract me with other things like reading etc. It's still hard and I have to see how it goes and how I'm feeling in the next few days.

The thing that worries me, is that Betaferon has a side effect of depression and anxiety (although it is uncommon). On the UK website and in my GP's medical book, it was contraindicated to take with a history of depression.

How do other people who are on Betaferon feel? Did you experience any of this?
~ * Never stop walking * ~
Hi Jess
I took Betaferon for 9 months and stopped taking it because I couldn't think straight on it. The neurologist wasn't happy but I just couldn't go on like that. I also had suicidal ideation on Betaferon but didn't tell anyone about that. The mental fogginess completely cleared up when I stopped taking it and the s. ideation stopped as well. This was an extremely stressful time and it was difficult sorting out what was side affects of betaferon, what was old symptoms and new symptoms of ms. I then took avonex but relasped on it. Now I take copaxone and have found it suits me the best of all, I get far fewer side affects than betaferon. I thought I would share my experience as I know sometimes it can be of use. I found it and still find it hard to sort out symptoms. Personally, the interferons don't suit me. If I could go back and do it again, I would have told the neurologist straight away about the brain fog and other severe side affects and not gone on alone for so long. I wish you the best of luck.
El
Thank you so much for your reaction! It is really helpful to hear how other people were/are doing on Betaferon. It's indeed very stressfull at the moment and still find it hard to think straight. Everything seems to worry me so much. I took my last Xanan yesterday morning and was doing fine during the day, but then end of the day got worse again. I try to think about positive things, but it's hard. Walking seems to help, walked 10 km yesterday during the day, and I tried some breathing exercises from my yoga to calm me down this morning after I woke up, very restless with sleeping as well. It is hard to sort out in my head what's the medication doing with me, and it's easier said then done, go of the Betaferon for 2 weeks and see how you feel..

How long did it take with you for the side effects to clear up? And you didn't have any anxiety or anything with the copaxone?
~ * Never stop walking * ~
Just spoke to the MS nurse, she was ringing to see how it's going. I told here I'm doing a bit better, it's still up and down but better then last week anyway. I told her as well that I don't think I want to be on the Betaferon anymore (thinking of swopping to Copaxone), as I don't trust it after this happened. I think it's a combination on things that came up with my councelling and the medication, as it was stuff what came up with the councelling, but it got worse and worse. The nurse will ring me again next week, after being off the Betaferon for 2 weeks and the Xanax for 2 weeks. And from there on we will take it further medication wise. I will follow up this week with my GP as well, after being of the Xanax for a few days and have a councelling session tomorrow.

Anybody else any opinions on this whole situation? Experiences? I'd love to hear them.

@El: How long did it take with you for the side effects to clear up? And you didn't have any anxiety or anything with the copaxone?
~ * Never stop walking * ~
I think that soon after an attack, we feel bad, really bad - both physically and emotionally. It took a year for me to stabilise my emotions and get used to new sensations. I have continued improvements even 2 1/2 years later.

The thing is... Interferon makes you feel terrible. So starting a medicine that makes you feel terrible when you've just suffered an injury to your nervous system is going to feel bad. And you never quite know if the dull ache is from the interferon or the disease.

You may have chosen Beteferon because it has fewer shots or because it was recommended by your Neurologist. Many seem to prefer "High dose Interferon" and feel it's the most effective. However, at least as far as reducing exacerbations, Copaxone is every bit as effective and there is evidence that it not only continues, but builds in its effectiveness. The only drawback is that it takes longer to reach full effectiveness.

Copaxone if you don't have undue skin reactions is generally better first choice not only for not making you feel ill, but also because you're not altering your immune response to anything but mylen.
Alex

Diagnosis: Jan 2010, OMS April 2010.
Hi Jess
You mean how long did it take for the side afffects of Betaferon to wear off? This was in 2007, but as I remember the mental fogginess improved straight away and cleared up in a few weeks.
And did I get anxiety on copaxone? I had one bout of anxiety that I think was due to copaxone. I asked the neuro about it because it was distressing me and he said that all the possible affects of copaxone on the brain are unknown. The other bout of anxiety I had recently, I think was more about stress from other things and not from any medication.
Its so hard when you're in the thick of it. I remember when I was newly diagnosed and starting on MS drugs that I felt overwhelmed and that no one could really know what was happenning for me. My only advice is to talk it out with as many people as you think appropriate, make any decisions when you are most calm and listen to your own wisdom (you're the one with MS and you're the one taking the drugs).
Hi Jess,
I have taken Betaferon and the side effects were terrible, I never got over the flu like symptoms
and couldn't think straight. I went off it and tried it again some years later and it
was even worse, this time I lost 5 kilo's. I wouldnt recommend taking any of the interferons to
anyone. Wish I had been offered Copaxone instead.
It is the worst time when you are first diagnosed, I felt depressed and had some panic attacks
because I didn't know what was going to happen. I am sure you will find that it will
take some time to adjust but it will happen, your symptoms will resolve. Buy Prof. Jeleniks book
and read it a few times then start to make some changes, you will feel empowered by taking
control of your life and keep in touch with everyone here, it is a very supportive community.
Hi all,

Just thought I give a bit of an update. First of all, thank you very much for your reactions. It's so helpful to hear other opinions and experiences, makes me feel I'm not the only one and makes a bit of sense of it all.

After stopping the Betaferon and a week of Xanax I am feeling a lot better (2.5 weeks ago now). A lot of the anxiety wore off, and although it is not completely gone it's better now then it was. I think it was a combination of things that came up in my counselling and the medication made it a lot worse. I'm still not doing great I must say, so I decided to go back on anti depressants which I started last Saturday. I hope I will feel better soon as I still feel quite low most of the time, and I should feel better in time. And I have another prescription for Xanax in case I get worse again, then I can take one.

I told my MS nurse I definitely want to switch to Copaxone. I don't want this to happen again, if it was the medication or not, I have another choice by choosing Copaxone. And hopefully Copaxone will work just as well or better, and without the side effects. I actually notice now that I was feeling a difference in my MS symptoms, I had more feeling in my fingers which I didn't had, I had hardly any tense and numb feeling in my upper leg, and that's both worse again now. So the Betaferon was probably working, and so should the Copaxone. The nurse is going to ring me tomorrow and hopefully I can start that soon.

Thanks again everyone, and any more things to add please do ofcourse :)
~ * Never stop walking * ~
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