Can you predict when you will experience flares?

[Ayla]

It may seem a silly question but I am interested to know if anyone is like me, in that they have some months in the year when flares always occur. For me, it is March and October, with the 'danger' period starting mid February and mid September. Anyone else have a similar experience?

[Hidden]

I doubt anyone can say with any certainty that flares are predictable but there appears to be triggers that 'may' cause them.

In my case, I've flared a couple of months after having surgery to dilate my bronchus and the team at Addenbrookes have found that inflammatory processes can indeed drive the disease. That said, the flares also occurred approximately a year after my annual Rituximab maintenance dose so perhaps it has a 'use by' date?

Other inflammatory events have also occurred at this point in time; winter bugs (I have a flu shot but it doesn't stop me getting a cold, chest infections (more prevalent in winter), colder weather (lungs prefer moist warm air) and so on.

As with the onset of the disease, there appears to be a variety of triggers. A few proven environmental facts do appear to play a part but no-one can say for sure what fires up the vasculitis in those of us unlucky enough to have the genetic propensity. If the immune system is appropriately compromised then perhaps the vasculitis finds it easier to 'strike' again?

Another issue is how to define a flare. I currently have all the symptoms but no elevated markers. David Jayne suggested to me that some patients may suffer constant 'grumbling' disease which is never completely under control and of course, there are patients who have apparently horrendous high ANCA but feel absolutely fine.

Bearing in mind there's never been a case of the rogue antibody disappearing once developed, there's every reason that a flare can happen at any point in time (and why I avoid using the term 'remission'!). This is a very complex condition with only the minimum of detailed understanding.

Sorry for a rather long winded way of saying I don't think anyone can predict flares with any degree of certainty!

Healthy wishes.

[Zebra]

My Behcet's is typically worse between October and April with hospital admissions the last 3 Octobers and previously in the Februarys.

When I was teaching, it often coincided with half term which is when teachers get ill often anyway - I just got the flares badly I guess due to fighting infection, plus also exhaustion etc.

Stress is another trigger and we think the lower levels of Vitamin D in winter months play their part in making symptoms worse.

Take care

[Ayla Volunteer]

Thank you, both. Interesting.

I think I am one of the constantly 'grumbling' patients that Dr Jayne describes but I also have these 2 distinct periods a year during which things get much worse. My 2 episodes of kidney involvement happened in October 2008 and then March 2011 and I have noticed, over several years, that I feel considerably worse during these months.

Is it worth considering a Vit. D supplement, do you think? Especially those of us who have to avoid exposure to the sun?

[lisa-ranyell Vasculitis UK Volunteer]

It is an interesting thought, all of my major flare ups have been in July and last year I had sinusitis in July just after receiving Rituximab. I am probably also a 'grumbling' disease patient too as I cannot seem to go more than 6 months without treatment and constantly have this feeling of being on the verge of a flare. With regard to the Vitamin D supplement this is only normally needed to help with calcium uptake and is included in many calcium supplements so it would depend what other medication you are on. Taking something like Adcal might help if your consultant agrees, although they are pretty vile to chew!

[Bobs]

Weird, but a few weeks after I became ill with this disease (I have only had it for 6 months) and before I was diagnosed, one of my early blood tests showed everything was fine except that I was very low in Vitamin D. A big intake of supplements made no difference but no doubt by then the horse had bolted.

[Hidden]

I agree, how do I know im having a flare up? Since being diagnosed with WG 2008 I have never felt completely well, even though I am now in remission, 5mg pred daily and having my last planned ritux next month. My markers all seemed to be good. As I had lung and upper respiratory involment, I am still short of breath and cough for hrs at a time and have ear problems. But thankfully it is manageable. I have been told I can have ritux in the future if I have a flare up, but im concerned at what stage will I know if I need it.