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Recently diagnosed, Avonex advice please...

Hi, I’ve recently been diagnosed with MS. I’m at the stage of choosing the right medication (injection) and I’m particularly interested in Avonex, but I’ve seen a few posts re:the side effects and they seem to be quite scary in regards to the after feeling and the amount of pain killers you need to take. I’m new to this all and in need of some honest and inspirational feedback please.

Thanks in advance.

With regards to Avonex… take Tecfidera instead. Better results, fewer side effects, no needles.

Hi Paolo Smythe, thanks I’m going to check that medication out.

I’ve been on avonex for about 14 months or so. It’s the only Dmd I’ve tried so far. At first I had quite nasty side effects but on the advice of my Nurse I started taking ibuprofen along with the injection which greatly improved my side effects. Now I mainly get just a high temperature.

I chose Avonex for a couple reasons, I found a weekly injection to be more manageable for my lifestyle then the daily injections. Tecfidera wasn’t an option at the time. Tysabri was offered to me due to the nature of my relapses but I declined again for 2 reasons. The risk of PML (I wasn’t feeling lucky after only being recently diagnosed) and I wanted the option of moving to a ‘stronger’ Dmd if the one I was taking wasn’t ‘working’.

The best advice anyone can really give you is research a little on each and decide on what you think will be best for you. There is no right or wrong answer… just like how we all suffer with MS in varies ways its the same with treatments, what might work for one might not work for another so there can be some trial and error.

I was given the choice of Avonex or every other day injections. I chose the later so I could travel easier (no 'fridge needed). When I started the Extavia I did have to take both ibuprofen and paracetamol for a week or so till I got used to it. I’m now on Tecfidera. As pills it is easier to take, it easier to store, easier to get used to and in trials more effective. I you weren’t given the choice of Tecfidera I’d ask my MS nurse why not?

Best wishes.

To echo Vithfari… i would be concerned that an ‘expert’ in the field of MS would over look Tecfidera as a viable option for you.

my experience on Avonex is similar to may98. The injections are mostly no problem at all but for me the flu-symptoms side effects have persisted - 45 weeks now.

So I will be switching to tecfidiera an a couple of weeks time.

My neurologist emphasises that all DMDs have side-effects so don’t expect Tecfidiera to be free of them (indeed lots of people on here have found them a challenge). He also says that the avonex type dmds are well tried and tested over many years whereas Tecfidiera has only its clinical trials to go on.

But for me the deciding factors were:

  • Tec is supposed to be 50% effective - Avonex is 30%
  • Tec is a pill - better than injecting
  • Side-effects will hopefully be more tolerable
  • Easier to transport when travelling

Best wishes - whatever you choose

David

To Gribs, yes I agree about what might work for one… after reading more about how MS affects us differently, I started to make a few notes of each drug, the pros and cons and how it would apply/affect me and my lifestyle. Thanks for your comment.

To Vithfari, Paolo Smythe, & Davids re:tecfidera, the MS nurse did mention it but didn’t​ talk about it in-depth as much as the injections, therefore I got the impression that the injections were more popular, until I came on here, I’m now more aware of tecfidera, so thanks for your comments guys and I’m going to enquire about it further with my MS my nurse.

Hey everyone… just wanted to give you an update in regards to the dmds I was offered… I got offered injections only because the tablet is not available at my hospital (national hospital of neurology, queen square) so could anyone kindly let me know what hospital they are at, that’s offering the tecfidera tablet, preferably if it could be in London too please.

Is your neurologist an MS specialist neurologist? As far as I know MS specialist neurologists are the ones that can prescribe Tecfidera. Non- MS neurologists are only able to prescribe injectables. That was what I was informed by a general neurologist last year, things may have changed.

If your neurologist is not an MS specialist you can asked to be seen by one. It’s in the NICE guidelines for treating MS.

xx

i am sorry but how the phuck is this possibly true? goddamn the NHS

My neuro said that tec and Avonex were the same cost

Hey Lenney, Paolo Smythe, may98 and davids,

Firstly sorry for the late reply, been a little busy trying to stay on top of things with the recent diagnosis. In regards to Tecfidera I’ve been notified that its just not available at my hospital yet but should be in the near future, so fingers crossed it won’t be too long.

Thanks for all your comments and advice.

It sounds a bit odd to me. I asked my MS neurologist to go on Copaxone for the four months before I could start Tecfidera. I felt being on any DMT at the time would be better than nothing.

My MS neurologist wrote to be saying injectables take several months to begin being effective and it wouldn’t be worth it. So I had to wait for my blood tests, get results and first Tecfidera delivery before starting the tablets.

If Tecfidera isn’t available at your hospital, maybe your neurologist can refer you to another Neuro who is able to prescribe it. Honestly it is a much better option to start with something that actually is likely to give fewer side effects long term and be a whole load more effective at reducing relapses. Reducing relapses is the most important thing you can do at this stage of your MS and 50% is obviously a better option than 30% reduction.

The side effects most commonly suffered by Avonex users is flu like symptoms (hence the paracetamol and/or ibuprofen). The side effects suffered by Betaferon and Rebif are similar. Copaxone may give injection site reactions (as can the other injectables) but may be relatively side effect free. Tecfidera typically gives an upset stomach initially but that can usually be managed and will go within the first few months of use.

My neurologist is now able to prescribe most DMDs but some of them are not able to prescribe Tysabri, Tecfidera, Gilenya and/ or Lemtrada (amongst others). A few years ago, my neurologists’ local prescribing centre hadn’t been set up so he referred patients (me included) to a variety of other hospitals, depending on which ones individuals could get to. He basically wanted his patients to get the most effective treatment available as fast as possible. Once his (eg) Tysabri clinic was set up, he gradually moved all his patients back locally.

I know it may delay the start of your DMD slightly but it would (in my opinion) be better to make the most informed decision about DMD that you can. Many of us have decided preferences for one over others but in general that’s because we’ve tried others and think the one we’re on is the easiest and/or most effective given our lifestyle.

By by the way, I’ve had Avonex, Copaxone, Tysabri and am currently on Tecfidera. I believe Tysabri is the very best treatment but I had a problem with my liver when I was on it, it is also less easy to fit into lifestyle as you have to more or less give up one day a month to it. Tecfidera is in my opinion a far better drug than any beta-interferon or Copaxone.

You have my sympathy, just being diagnosed with MS is hard enough, but managing to navigate your way around the various drug treatments is hell on earth!

Sue

Dear Charlz.

Life is tough enough as it is, without having to take on more battles, but the ‘unavailability’ of tecfidera sounds bogus and is worth challenging.

I am on tecfidera and the side effects and consequences of taking it have been pretty much non-existent. This, along with its reported efficacy, and when compared to the lesser benefits of other drugs combined with their longer list of more significant side effects, allows me to conclude that fighting for tecfidera is in your best interest.

however, each person is different and i might have enjoyed the other DMDs (which i have not had to try) just as much as the Tec.

i wish you the very best of luck. i know it might seem counter intuitive to battle against those people you are hoping will help you more than anyone, but in the health care industry, it is true that ‘the squeaky wheel gets the grease’.

ultimately though, the most vital thing is that you find yourself exploiting some kind of DMD and i hope you are able to start your course with minimal delay.

I’m surprised that you were told this at Queen Square, of all places. I go to Charing Cross Hospital (though I live in north London so not my nearest hospital) and see a fab MS neuro there. I have health insurance so I’d originally seen him privately. When the dx was confirmed I ‘followed’ him to Charing X where his NHS practice is. As soon as the dx was confirmed at end of December he said that I should start on a DMD - and he highly recommended Tecfidera - as soon as possible.

The funding for Tec is something to do with the hospital and nothing to do with my own GP and health trust.

Queen Square is pretty good though and apparently the MS Centre is too. I would imagine that there is a difference between seeing a regular neuro and an MS specialist neuro in terms of what you would be prescribed.

It’s a shock being told that you have MS and takes a good while to come to terms with it. I’m still working on it.

Best wishes - Louise

Hey everyone, I’ve spoken to my hospital and they’ve confirmed that Tecfidera will be available soon and that there is a waiting list already. So to the Anonymous person above give them a ring and check it out. Again thanks everyone who’s recently commented.