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strictlysoca
1 month ago

https://shift.ms/topic/avonex-and-copaxone-crab

Thanks @acceptance. I’ve already had a rant about CRAB drugs triggered by this. I try not to reply too harshly to those who have been offered them and don’t have a choice but this just confirms what we know. These drugs don’t work and there are many that do.

The thing that I am troubled by is that highly effective drugs have their relapse rate compared to a very low effectiveness of Avonex et al as a way of showing they are better.


acceptance
1 month ago

I agree @strictlysoca….it speaks volumes that no one answered your post about crabs… knowledge is perhaps not always power it seems

We are all in invidious positions. Don’t take and get worse…. take it and feel shite….but avoid progression for longer…or worse still, discover that your treatment strategy is flawed …

You can’t do (or say) right for doing wrong and so you have to trust the experts Ultimately, who trust the ‘meta’ data and money provided to them by pharmaceutical companies (who are the only ones who can afford to fund the ‘research’…)and who get it wrong time and time again… the major problems recently seen with Tecfidera and Lemtrada attest to that

.like I say, we seem damned if we do, damned if we don’t arg
And while we stay passive and don’t speak out, nothing will change


strictlysoca
1 month ago

I know what you mean @acceptance I had hoped for some bite back 😀 I do love to talk.

It is hard to make decisions given the state of MS research currently they don’t even get the root cause (but it does seem near with the EBV links). Many worry about side effects. My thing is that I am prepared to take a relatively high risk (even though really with monitoring it’s fairly low) to preserve my brain function.

I’ve been lucky that apart from Avonex all the side effects have been bearable and even with Avonex I kept going until I had another big relapse which is inevitable as it does sweet FA 🤬


acceptance
1 month ago

@strictlysoca I know right?! I have found that any opinion that contravenes the ‘experts’ opinion, is largely ignored here, in favour of strenuously advocating the dmds.

I’m sorry Avonex didn’t work for you and gave u nothing but a relapse.

The whole system seems wrong to me. I have found some balanced arguments on the Barts website. Prof G seems an ethical, moral, intelligent and independent voice in this shitestorm.

His anti-c20 piece calls into question the treatment protocol concerning the latest wonder drug Ocrevus; and it is eye popping frankly:

“So don’t let anyone pull the wool over your eyes that anti-CD20 therapies are not immunosuppressive and are not associated with an infection signal. It is becoming clear to me that continuous dosing with anti-CD20 therapy will result in a cumulative increase in infections and at some stage we are as an MS community are going to have to derisk this problem by using (1) anti-CD20 therapy as an immune-reconstitution therapy (IRT) or as (2) an induction agent or (3) by correcting the immune deficiency by giving immunoglobulin replacement therapy when our patients develop hypogammaglobulinaemia”

(Ocrevus is an anti-CD20 therapy, and hypogammaglobulinaemia is v serious and v expensive to treat)

If we all stay passive and don’t speak out, then the current status quo will never change.

Take care mate ✨🍀💖🌈✨


itsmewithms
1 month ago

Just looking for the alternative…have been recommended to switch to Ocrevus and will be starting two weeks from today. What is my best shot at avoiding further advance of this disease…proven, researched and available right here and right now.

I’m the strange type that never gets sick and am not as concerned about my immune system being challenged…


itsmewithms
1 month ago

Already take a certain amount of Vitamin D but don’t dose it to the extreme that I have heard of in some protocols.

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