Last reply 1 year ago
Avonex vs. Tecfidera vs. Nothing

Hi,
I haven’t yet even been formally diagnosed with MS, I have had severe optic neuritis in my right eye that included three points of demyelination on my brain MRI and another one on my spinal MRI, due to this and my low level vitamin D my neurologist suggested I begin Avonex, which now, I have been taking for 4 months. I find the side affects can be debilitating, my depression and tiredness has increased rapidly so and as such I contacted my MS nurse to see about taking Tecfidera, however on receiving the information for this and see other peoples reviews I feel uncertain about whether this is the best choice? I personally feel like giving up on all preventative medication as prior to taking any I felt fine, aside from the loss of vision, but now I feel unwell all the time, tired, achy, depressed and bad headaches. I just fail to see the benefits, which is probably quite naive of me, but I am truly struggling to feel that the medication is the right course of action for me. Has anyone else felt like this? Have you experienced any relapses since stopping?
Any advice would be greatly appreciated as I feel a bit lost at the moment.

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stumbler
3 years ago

You pose some tough questions, @beejling . They’re tough because there are no right or wrong answers.

Medications are very much “horses for courses”. What suits one person doesn’t necessarily suit the next. Even trying a no medication solution might not work for you.

MS is variable from one person to the next, as are the reactions to DMDs.

So, what is the answer to your conundrum? Well, you could start with base facts, Avonex is an injectable and Tecfidera is oral. You’re aware of the downside of Avonex, Tecfidera may cause stomach upset and is prone to cause some flushing, which is an inconvenience which doesn’t last too long.

Taking nothing may work for you, subject to a good diet and a balanced lifestyle, whilst avoiding stress. And, it may not.

There are no right and wrong answers for you. It’s down to trial and error, just like the rest of us. 😉


jjones1976
2 years ago

Hi Beejling,

I am in an almost identical situation as you were a year ago. What did you end up doing?


cameron
2 years ago

Well, I would say you’re still really in ‘limboland’ if you haven’t had a formal diagnosis. What is holding this up? Having said this, it’s really good that your neuro started you on treatment: it shows he’s pro-active, giving you the best chance of recovery and not fobbing you off with a ‘wait-and-see’ approach. This bodes well for the kind of dialogue you’ll be able to have with him about treatment choices. As @stumbler says, DMTs or not comes down in the end to individual choice but remember that they are an insurance policy not an ‘instant improvement’ fix. The one exception seems to be Lemtrada, which has the capacity to halt early MS in its tracks. As you would expect, it’s a very powerful drug and it certainly wouldn’t be available to anyone as yet undiagnosed. Lots of people post here about how difficult to get it, so there’s probably a postcode lottery as well. I would say, do all you can to bring forward discussion with your neuro with a view to hastening your dx and in the interim, speak to your MS nurse about alternative first-line DMDs. To repeat what @stumbler says, it’s ‘horses for courses’.


pinkyx
2 years ago

I am in the same boat . Would be interested to know what happened and if you stopped the injections of changed to the tablet form. Please reply !!!!


michael
1 year ago

Hi @beejling, @jjones1976 and @pinkyx

I am in the same situation as you three, I am currently taking the powdered form of Avonex which is stopping being manufactured so are considering my options. Tecfidera vs. Nothing? I have not had any relapses in 10 years so am considering stopping all DMT to see how I go?

Your thoughts will be greatly received

Cheers

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