Most of us regulars on here have our hobby-horses and are familiar with other people’s too (Oh no, there’s Alison100/Paolo on his/her soap-box yet again, droning on about the same old same old yet again, so I’ll ignore it like usual …) But there are newer members on here who do not know what to make of our half-informed but confidently-stated pronouncements. Thinking before posting is often a good plan.
This is not a point about Avonex - I have nothing to add about that here. This point is about posting responsibly.
I don’t appreciate this. you might roll your eyes at me, but it will not stop me from stepping up on my ‘soap box’.
if i cross a line then delete my posts or ban me out right.
The motive for my comment came in light of a poster saying they had been recommended a drug which has been proven to be inferior.
i thought that perhaps this person might benefit from a contrary opinion in order to motivate them into conducting their own research, rather than simply trusting someone’s opinion. (You note i didn’t specify a definitive alternative?)
Too much faith is put into medical professionals, who for whatever reason, prescribe what they do. Sadly people like me have to live with the consequences of their advice, but also we can learn from it, and then share this acquired wisdom (such as it is).
But thank you Alison for your condescension, you have succeeded in pissing me off, and thus i now feel even more inclined to drone on.
Well, we have both made our points and pissed one another off. If you don’t try to report me for being an insufferably condescending cow, and I don’t try to report you for recklessly seeking to disrupt the therapeutic alliance between doctor and patient (not that I know or care whether either of those things is a reportable offence), then I guess we’ll live to debate another day.
I think the point is that a diagnosis of MS is made when certain demonstrable conditions are met, i.e. it’s a positive diagnosis.
A negative diagnosis being where one is diagnosed after conditions A to Y are ruled out, therefore it must be Z.
This does not mean that all of a given set of conditions must be met for an MS diagnosis (e.g. oligoclonal bands are not found in the CSF of all people with MS, but their presence is one of a set of diagnostic criteria). Merely that MS generally is proven to be the correct diagnosis because of a panel of tests have shown it to be. Obviously, mistakes are made (for eg Boudica was diagnosed with PPMS at first and this was later altered), but in general once a diagnosis is made it’s made because it’s been proved.
You’re right - that was the wrong word, and I would like to withdraw it and apologise, Paolo. I do not think you were being reckless; I think you were being a little bit cavalier, that’s all.
I’m not sure I appreciated your comment either. I am in the process of doing my own research (as you most kindly suggested i should do) about different DMDS but just wanted the opinions of people who know what they are talking about. I am already shit scared of starting DMDS and your comment stressed me out even more. I have also been told that because I haven’t actually relapsed but mri shows Ms is active in wouldn’t qualify for other drugs. So guessing the ‘inferior’ avonex may be my only form of defence.
I don’t know is the short answer. It must depend to some extent on the severity of depression - I think the advice is not to take it if you are severely depressed but can’t quite remember for sure. One option otherwise is to try it but keep a close watch for signs that your depression is getting worse, especially if it is happening in a noticeable weekly pattern e.g. if you feel especially depressed the day after taking it. Some people adjust their depression medication to counteract the Avonex.
At least is you are already “known” to be susceptible to mental health issues they should take you seriously if you decide to try it and it does make you worse? I had never had mental health issues before and my MS nurse didn’t believe the Avonex could be linked to the panic attack I had on the first day of taking it, which is one reason it took so long before I came off it, I just didn’t put two and two together quickly enough and assumed I was depressed & anxious for “other reasons” rather than because of Avonex.
The DMDs come in categories - “moderately effective” is the category for which you qualify which includes Avonex.
“More effective” is for people who have more active MS and/or who still get relapses on the another DMD.
“Most effective” is the next step up if the MS is highly active and/or other DMDs have failed.
Avonex is inferior to the higher-category drugs in the sense that it is less effective than those drugs *for people who need the stronger drugs". The problem with the stronger drugs is that they also have higher risks, which is why you only qualify for those if the first line options don’t work for you.
My neurologist (who by the way is a respected MS specialist) believes that for about a third of people, Avonex is a great option and many of his patients remain relapse free while they are on it.
That is a good point about efficacy and risks. Stronger is not necessarily better: the best DMD is the one that gives the best possible balance between risks and benefits for an individual person.