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Appointment update - DMDs.

Well had my appointment. Neuro said no need to do MRI as its clear to him the m.s is active at the moment and I need to be going on medication as another relapse will increase the chance of disability and my left leg has clearly already been affected so we don’t want this to be further affected. I cheekily asked about oral medication and was told that would only be available once I’ve tried the beta interferons and failed in them due to the side effects being quite bad from the oral one. However I am still worried about side effects and in particular depression. I had some post natal depression a few years ago and also when in the steroids. I don’t want this with my three year old. Also the flu like symptoms worry me as I cannot or do not want to have to take anymore time of work…I like my job and feel better when I’m working. And again don’t want to waste previous time with my boy. Think the choices are between rebif and avonex? He said these were the two I think…said one interferon is once a week and other three times a week so I assume its these. The m.s nurses will be in touch to arrange this. Hope it doesn’t affect my ability to continue t go to yoga classes, gym etc as this is strengthening my leg too. X

Have a look on the msdecisions website. There are three interferons: Avonex, Betaferon (Extavia is the generic version of this I think) and Rebif. Avonex is once a week, into muscle. Betaferon is every second day, under your skin. Rebif is three times a week, under your skin. Not everyone gets side effects and most people find that they wear off and are manageable with ibuprofen and/or paracetamol, but I think you need to check about depression because I think interferon is contraindicated for someone with a history of depression - I’m not sure that PND is the type they mean though?

Hopefully your nurse will be able to reassure you.

I hope whatever you choose works really well for you :slight_smile:

Karen x

Thanks Karen. Ive looked at that and it suggests avonex and copaxone however I think my nhs only offer two types initially. Think I need to look at it again and make a decision once I’ve met with the nurses. Its a long process this, well longer than I thought itd be. As im not good with needles rebif seems to be a better option but I don’t know. Im worried the side effects might make looking after my boy and working hard :frowning: but I know DMDs are necessary. As he said ive been left with damage now and another relapse may leave more damage…i don’twant that x x x

Hi Lisa I’m on Rebif and no flu like symptoms for me. I am pleased with my choice as its so easy. Xx

Thanks mrs h…think I might have to.post in a bit to ask.about peoples symptoms etc. Its hard cos in myself at the moment I feel quite well really other than my daft left leg but I’m working on trying to.improve that. However consultant is very sure its DMD time as whilst my leg may improve over time another relapse is not a good idea especially as my last two relapses didnt even have a gap of three months, only just two ! Just want to make sure the DMDs dont have too much effect on my life now too well as much as possible. X

Have a Loki at my copaxone / Rebif thread. There’s loads of info on there. Xx

Okay thanks x

Rebif has worked very well for me and I have been relapse free for over 3 years. I did not get any of the flu like symptoms but my white cells went down ( and recovered ) and my platelet count fell ( and has not recovered ). I am stable and keeping pretty well so no intention of changing anything. We all react differently to these meds so often the only thing is to make a choice and see how we get on. I wish you good luck with your choice and hope it works as well for you as it has for me. Roger

Hi

Don’t worry about the flu-like symptoms. They can be dealt with by taking paracetamol or ibuprofen when you do the injection. If you do the injection last thing at night, you should sleep through them. They go away after a few months, anyway. If depression is or has been a problem, raise the issue with your MS nurse or your neuro.

As for the ‘bad side effects’ from the oral DMD (Gilenya / Fingolimod), I was on a clinical trial for about two years and now take it daily. The only side effects I had were a strange sensation on one side of my face - somewhere between tingling and burning. This went away after a few weeks. The real reason they won’t give you Gilenya straight away is cost - it’s more expensive than the interferons and Copaxone, even after the drug company dropped the price to get NICE approval. Gilenya will be prescribed if your neuro decides you can’t take injectable DMDs, or if they don’t work (side effects, including depression, or continuing to relapse).

Good luck!

Hi Lisalou

Just out of interest, did your neuro mention Tysabri? I know it can be more risky than the interferon drugs but it is also much more effective. And they can test you for the JC virus and if you are negative then Tysabri is not risky. And it is an infusion every four weeks, rather than an injection several times a week. It may be that you don’t satisfy the criteria, which are:

  • Two or more disabling relapses in 1 year AND
  • One or more gadolinium-enhancing lesions on brain MRI;
  • A significant increase in T2 lesion load compared with a previous MRI

I have the idea that the interferon drugs make it more likely that you will end up carrying the JC virus, which is why it’s more sensible to start on Tysabri than take it after the others.

Sorry, my cut and paste was a disaster. The criteria for getting Tysabri are

  • Two or more disabling relapses in 1 year AND
  • One or more gadolinium-enhancing lesions on brain MRI OR
  • Significant increase in T2 lesion load compared with previous MRI.

I know several people on Tysabri because the interferon drugs did nothing for them or they got allergic reactions - all of them have tested positive for the JC virus (but I could be wrong in thinking there’s a connection)

Thanks for all your advice. I suppose there is only one way to know and that’s to try. I had a feeling GIlenya was more about the money too. Typical…guess I’m gonna have to get over the fear of needles. That’s why I was thinking rebif really. Mrs h I will look at your post shortly. I’ve had a busy weekend so not had chance. Busy but fun :slight_smile: made me realise life doesn’t have to stop just needs adapting slightly. Sewing chick they will only offer tysbari once the interferons have been tried and failed. But thanks. Xxx