On my 3rd DMD and wondering if there is a point...

OK, so I’m feeling sorry for myself, and for that I can only apologise. But yesterday, I started Rebif 44, after previously being on Copaxone for a couple of years and Avonex for around 5 years…and I’m just wondering, what is the point? I’ve been switched due to continuing relapses, and was moved to Rebif for the higher dose. But today I feel awful; yes, I know it will wear off after a month or so, but that’s 3 times a week feeling like this! And for what benefit? It seems incredibly ungrateful to turn down the chance of a DMD when so many others cannot get it, and I’m certainly not dismissing the drug as a treatment. But I wonder, are there times when it might be better to simply say, “it looks like these don’t work for you”? Yes, that’s a hard and horrible thought for anyone to take in, but I’m wondering if sometimes it has to be done?

Like I said, I’m feeling rubbish and I’ll maybe feel differently when I feel better. But I do think this is a point that perhaps we all shy away from (patients and our doctors) - some treatments don’t work.

Sorry for the moan…maybe I shouldn’t have just read “Bad Pharma”…

Sjs Didn’t work for me either was having more relapses on it than off it, so don’t have any now - just cope with the relapses as and when they hit. Hope you start to feel better soon X

There’s nothing ‘incredibly ungrateful’ about stepping back a little and taking a broad look at how things are for you. It sounds as though you feel your doctors are not doing this - so someone has to!

If it seems to you that the doctors are just taking a narrow "If ‘a’ doesn’t work, try ‘b’, then if ‘b’ doesn’t work, try ‘c’ ", without properly reviewing your situation, then perhaps you need to have that conversation with them. I think you are on to something when you say that patients and doctors are both sometimes inclined to shy away from the wider ‘What’s this all about then?’ question. But it might be that they would be willing enough to engage in a discussion if you initiated it.

I believe strongly that treatments of all kinds - drugs, other therapies or whatever - have the best chance of working well for us if we are comfortable with being on them, and happy that the experts have thought things through before deciding what’s best for us, so we feel propely engaged. For that reason alone, I think it would be a good idea for you to have a chat with your neurologist.

Fingers crossed that you respond well to the Rebif.

Alison

x

I am so sorry the DMD’s are not working for you so far.

I am surprised that you have been put on a third one if you are still having relapses.

Has Tysabri been discussed? If not - why not? The DMD’s are a first line treatment. Tysabri is a second line treatment if the DMD’s are not working.

Your alternative to Tysabri would be Gilenya.

I am on Rebif 44 myself and have done well so far so i hope it works for you but you do have other treatment options. Have a chat to your neuro to see why you have not been offered an alternative.

Best wishes

Teresa.x

Good point, Teresa. Not everyone wants to take the Tysabri route even if their MS does technically qualify, but that discussion is certainly something one would expect to be on the agenda if the first line DMDs were not working well (that’s how it went for me, anyway).

Alison

x

Having said which, having the doc reach blindly for even heavier duty meds is probably exactly not what you want at the moment, sjs1971 - not without without having a proper debate about treatment objectives and options anyway, and that is as much a philosophical debate as a technical one, sometimes.

A

x

I suppose that’s more my point - it seems that reaching for Rebif was a knee-jerk “oh well, we have to give her something” reaction, instead of taking stock and having a sensible discussion about the cold, hard facts of things. This also highlights, for me at least, the very notion of a “relapses”. In my neuros view, I have had a couple of relapses in the last few years. Yet in my mind, yes I have a couple of distinct episodes, but these are all part of a larger, long term pattern of worsening of existing problems. These seem all but ignored (they are just treated as an add-on; yes, take this for your nerve pain that is getting worse; have physio for your arm that is getting weaker and number). There are times when I feel like walking away from it all.

Thank you for all your thoughts; it’s a debate I’d love to have with a neuro but perhaps outside the setting of a consultation room!

Sarah

I felt a bit like you a couple of years ago. I had been on Rebif 44, Copaxone, Avonex and have now been on Tysabri for 15 months. Switching to Tysabri was the best thing I have ever done. I used to get terrible side effects with all the injectables and was still having a couple of relapses a year. I get no side effects from Tysabri except from feeling a little tired after my infusion. It sounds alot scarier on paper than actually having it. I just wish I’d not endured 5 years on Avonex!

Best of luck whatever you decide.

Andrea