Flares & Relapses

[Bailey24]

Do flares. & relapses almost always occur?

My 13 year old daughter has wegeners granulomatosis - diagnosed august this year.

Does anybody out there have WG & not suffered either - I worry so much for the future & would love some reassurance.

[Chris-Bromsgrove]

Hi, I don't have WG but I have another ANCA associated type of vasculitis (MPA). It would be wrong to assume your daughter will almost inevitably suffer a flare or relapse. I believe it depends on how well she goes into remission. When I was having my initial cyclophosphamide treatment my ANCA levels were remaining stubbornly high but I did eventually go into remission after 10 pulse of cyclo. However because my ANCA levels remained high (30 - 35) in remission my consultant did warn me that I would be at risk of a flare in the next two years. I have been in remission now for 13 months and touch wood, so far I have proved her wrong. In fact my ANCA level has continued to drop to the low twenties. So don't fear the worst. It might be best to talk to your daughter's consultant for some reassurance.

It might also be a good topic for a poll, if one can be devised. I've had a look through at previous polls and I don't think there has been one on flare occurrences.

[johnyenglish]

Hi I was diagnosed with WG in 2009 and have been flare and relapse free even though my C-ANCA level is still 175. Everyone is different but I do try to keep myself very fit and active and I think that this has helped. I really hope everything works out for your daughter. John.

[John_Mills Volunteer]

The boring statistic is that 50% of cases of ANCA vasculitis relapse within 5 years of remission. But that means 50% don't - and as johny say, above, everyone is different & everyone's experience is different & unpredictable. My motto is "be prepared for the worst and be grateful when it doesn't happen". I'm still being grateful 12 years on! John

[Hidden]

Whilst no one can predict what the future holds, the above comments will hopefully provide you with some reassurance and I too have remained relatively flare free for the past 5 years

One thing on common with all the vasculitic conditions is that they are enigmatic and dynamic in nature so regular monitoring is vital. From conversations I've had with a number of well respected specialists, it appears GPA/WG falls into two categories. In some it presents very aggressively but often responds well to a corresponding degree of treatment and they remain flare free compared to those with a 'grumbling' type of the disease who have had less intensive treatment.

Expanding on what John says, I'd urge all patients/carers to ask for and keep careful records of all tests and make regular reviews of measured blood test levels. That said, the most valuable indicator is the patient. Even the eminent Dr David Jayne told me that 'doctor doesn't necessarily know best!'. Taking control of this damned disease is good for the soul too. It doesn't own us, we own it, so for me knowing as much about it as I can and sharing experiences helps me to deal with the psychological impact too.

Whilst there's no litmus test available, changes in the levels of ANCA and inflammatory markers (e.g. CRP) are indicators of activity and so I personally get my bloods done every couple of months and keep my own records To illustrate this, my C-ANCA has never measured positive since I achieved remission but I have begun to feel the onset of a flare on two occasions. The CRP, C-ANCA and IgG levels altered very slightly suggesting something was going on and it was quickly sorted with Rituximab which was actually due anyway as I receive it as an annual maintenance treatment.

I've been told that ongoing research is suggesting that for new patients treated with the two year Rituximab regime, (i.e. doses every six months then annually as maintenance), the flare rate reduces to around 20% and for the ones unlucky enough to be in this group, Rituximab appears to work more effectively to re-establish remission. I appreciate not everyone has been fortunate to be given Rituximab as a front line treatment and in some cases, it doesn't work (just as cyclophosmamide had no effect on me) but the campaign to be made more widely available is clearly a worthy one.

For me, John's motto sums things up perfectly!

Healthy wishes to you and your daughter.

[SandieB]

Hi Baily 24 i have had WG for 20+ years now and have only had 2 relapses in that time which were 4years ago so hopefully your daughter will be ok once the treatment gets hold and she looks after herself, Good Luck to your daughter and keep thinking positive, i no its very hard at times but we have to try and not let this nasty disease take over our lives completely.

Sandra xx

[Bailey24 in reply to SandieB]

Wow Sandie B that's excellent - thats given me a real positive boost thanks x

[AndrewT]

Dear Baily24,

Sorry to hear about your daughter, please give her my- all of our- love, will you? Regarding the chances of a relapse, as john says, about fifty-fifty- bear in mind however that a 'relapse' can be anything from a complete collapse to a minor 'flare-up'. This makes the chances of a serious problem statistically much less likely- add to this, the fact that, she is now receiving specialist help......Nothing is guaranteed, by any means, but worrying about what MIGHT happen won't help you, or your daughter, at all. Don't get me wrong please, I'm NOT having a 'go', at you just trying to give you a sense of proportion. Sorry if this sounds like I'm uncaring- far, far from it I promise you!

Please do let me, us all, know how 'things' go, will you- my prayers are with you both.

Best wishes AndrewT

[Bailey24]

Thanks to everyone for their replies - all very helpful.