A question about remission.

[pinktiger53]

I understand vasculitis can go into remission. I was wondering if this is a fixed medical term determined by medical professionals or is it a way people use to describe the current degree they are experiencing symptoms. As much of what goes on with vasculitis is internal,how is remission determined?

[Nadine99]

Good question although I don't know the answer, I too look forward to replies too

[PMRpro]

Most vasculitides are due to an underlying autoimmune disorder: the immune system gets off track for some reason and no longer recognises the body as "self" so starts to attack various tissues thinking they are foreign invaders, like a viral or bacterial infection. Which label you get stuck on your vasculitis tends to depend on the set of symptoms and which tissues are damaged and in what way (at the cellular level). The inflammation is not the disease, it is the effect of the disease which is going on in the background.

This underlying autoimmune disorder sometimes stops of its own accord - and so the vasculitis also stops and the symptoms disappear. As long as the disease is not active, you are said to be "in remission". If it starts up again, you have a relapse or recurrence of the symptoms.

Some medics muddy the water (IMHO) by calling "freedom from symptoms" remission. And that can also be achieved by treatment with drugs. So there you have "drug-induced remission" as opposed to "latent disease activity" remission. Either way you don't have the symptoms/damage of your vasculitis - but it hasn't been "cured". "Cure" implies it has gone away and won't come back but until some way of dealing with the cause you can't have a cure. You can "cure" appendicitis for example by removing it altogether, it won't recur.

On the other hand, many experts won't say they can "cure" cancer - it goes away with treatment maybe, but it might come back if even a single cancer cell remains - but it might take many many years before it starts to grow again and it is very likely that cells go mad and start to form a tumour many times over during our lives but the body successfully recognises it and kills it off. No symptoms = remission. We only experience the ones that get big enough to notice for some reason. In some ways vasculitis can be the same - it only has an effect once it gets past a certain stage, lower levels of activity can't be measured using the screening methods available.

Does that help?

[JontyW]

The main website of Vasculitis UK has a good Frequently Asked Questions list ....

vasculitis.org.uk/about-vas...

This list includes a brief definition for Remission and Flare....

Note: Words in brackets ( ) are mine, to make it clearer!

"What is remission?

After the initial treatment period, when the physician considers the disease is controlled, he/she may consider the patient to be in remission or (the disease) inactive.".

(You would have to be in this state for several months, typically at least 6 months, to be considered in remission)

What is a flare?

A flare is where the disease has been relatively stable on maintenance therapy (i.e. in remission) but there is a sudden change in the original symptoms or new symptoms are reported.

[Hidden]

This has recently been discussed on the V-UK Facebook group and my response was as follows:

Remission is generally defined in two stages. The first is where there is sustained absence of disease activity due to drug inducement. Stage two is where the the same state is achieved & maintained after most or all drugs have been reduced. With vasculitis disease activity can be very difficult to detect and normal range blood markers are absolutely not an assurance (speaking from current personal experience). What matters, beyond definitions & the opinion doctors is simply how we feel in and about ourselves & what actions we can take to change things for the better!

The V-UK definition is given is at vasculitis.org.uk/about-vas...

Healthy wishes.

[Nadine99 in reply to Hidden]

Hi Martin, as a small aside to this, do you keep a check on any relevant info going onto Facebook because I, for one, don't use facebook and would appreciate any good info being transferred back here.

Thanks

[Hidden]

Hi Nadine

I do use the Facebook group and some of the same questions and information get posted here too. I always do my best to share anything significant that I think is particularly outside the general domain but there's also an issue of privicy when it comes to reposting. Susan & Pat in particular both do a great job (full stop!) in ensuring relevant items are cross posted where appropriate too but you've raised a good point with a reminder that not everyone here is on the FB group. Thanks! Healthy wishes.

[pinktiger53]

I have found FB and here excellent - probably in slightly different ways - I am fairly new to the internet as well as vasculitis- I am learning so much from both sources as well as gaining much support. i think some people will prefer one style over the other. I personally would highly recommend either and am really glad both exist. I am actually a member of and intersted in quite a number of charities and support groups and I have to say overall this is the best as far as reaching people of all kinds and meeting a variety of needs is concerned. A wonderful mix of warmth, humour, understanding and support as well as serious and even complex medical discussion and information - especially as this is a 'rare' and complicated condition. It is very un judgemental and respectful group- not always the case in my experience. Vasculitis uk should be very proud of itself!!! I have only been involved for barely a month and I love it!

[pinktiger53]

What is the ' recommended' button for on here - is it the same as ' like' on FB?

[PatriciaAnn]

Hi Pinktiger

I'm an Admin on here and I wasn't 100% sure what the "recommend" button was for - so I've checked. Yes, I guess it is like "Like". This is what is says:

What is the Recommend button?

The Recommend button is a way for you to publicly acknowledge someone's great contribution to the conversation...

Oct 29, 2013 12:55AM UTC