WG - What can cause a flare up or relapse?

[Dramaticharlie]

I have WG and I'm wondering what other people have found can set them off, my doctor said some people find out to stay away from certain foods etc, but I'm beginning to think mine is related to stress, is this even possible??

[PatriciaAnn]

Hi Charlie

I think the answer to this one is "how long is a piece of string". I certainly don't think stress helps and was probably a factor in bringing on my WG as I had been through an extremely traumatic time. Maybe certain foods don't help although I would have thought this would be dietary rather than anything else - but hey, I'm no expert.

In my case the cause of the flare was that I'd managed to get off Pred for about six months, I caught a cold and the immunosuppressant I was taking (CellCept) decided enough was enough without the help of the Pred. Since then, however, I've had a couple of really stressful times - I lost my Dad and my doggy within two months - but, thankfully, I didn't flare then.

Pat

[Meekle]

its most definately stress with me. i completely changed my lifestyle and ditched the stressfull office life i had and went to farm in wales instead!

got a small holding and reared my own pork, turkeys, hens, sheep and goats and all was rosy. then had a falling out with the landlord, and it all went downhill from there. i had to give up the smallholding, then get rid of all the stock - some of which i was really attached to - i ended up in a crap house in a terrace with bad neighbours.

father was diagnosed with cancer and the list goes on. ended up seeing a counsellor then i was referred to see GP and he diagnosed my flare up.

i had been free from all meds for 5 years. last chemo session was in 2011 so i had been 10 years, now having chemo again

so i am a great believer in stress being the root that drives it, however there may be other factors such as diet. i have never felt better since growing and rearing my own food, but whether that is the quality of the food or the exercise in producing it i dont know!!

[DevonLottie]

Sorry to be a bore but ... for me it's definitely stress! Although the first flare came after I was taken off all meds to see if I'd cope without them. After that, there's always been a stress trigger. Like Meekie, I found a calmer way of life by moving down to Devon and, although not fully recovered, the sea air has done my lungs the world of good. I've never noticed my diet causing any problems but I'm always cautious if I catch a cold as I believe viruses can mess with the medication.

[SusanCh]

I saw Dr at Addenbrookes last week who confirmed that infections can trigger flares - as has recently happened to me. People who are immuno suppressed are more prone to catching infections so they should be treated quickly if possible. I also think stress can lower your defences and cause flares as well. I seem to flare regularly but i think that it is just because I have an aggressive form of WG.

[SandieB]

Hi Susan iam under Dr Jayne at Addensbrook and i had a really bad flare up 2 1/2 years ago and mine was due to stopping a very low dose of prednisolone ( or that is what we put it down too after a bit of research) as i had been on a low dose for many years, i have had WG for approx. 22yrs but now it has attacked with a vengence effecting my feet and leg badly causing me to have to walk with a stick (: and iam on Retuximab and 5mg of Prednisolone and hoping to reduce that further when i go back to Camebridge in Febuary,I personally dont think stress has anything to do with WG as iam not a person who has suffered stress, yes i do catch everything going so have to be very carefull in that way but we must not wrap ourselves in cotton wool as it can easily take over our lives. Look forward to hearing from you and take care

[gsmith in reply to SandieB]

from august this year i have had terrible pains in my lower legs and feet feeling as if burned raw, a walk round the supermarket is as much as i can manage,my anka is fine and my rhumatologist suggested shoes with soft insoles so apparently its not a flare, i do have a life with lots of stress, is it anything like your foot pains?

[SusanCh]

Hello sandie I saw Dr Sivasothy at Cambridge due to ongoing lung problems. I haven't seen Dr Jayne since 2008. I have rituximab every 6 months locally. I was able to come off pred 2 yrs ago due to ritux and have been ok since. Dr S said infection had caused minor flare & put me on 2 lots of antibiotics indefinitely as well as nebs & considering pred again but side effects mean that they will wait & see if these work first. I feel stress and a virus caused my illness to start but it seems to start "grumbling" after 12 months usually. Everyone is different.

When I was first diagnosed my Rheum. said don't go in any crowded places like shops, cinemas or supermarkets. I sort of isolated myself and found it hard to go out . Now I try to get a healthy balance but not put myself at risk.

[SandieB]

Hi Susan lovely to hear from you so quickly, Iam also under Dr Sivasothy as i had lung problems earlier this year had real difficult breathing, could,nt even manage hoovering,shopping i was in a terrible state , he did a Bronchoscopy and washed my rt lung out and scraped my windpipe and believe it or not in 48hrs i was a different person this was day surgery because i live 140mls away in lincolnshire so its a fair old trip for me, but they are at the end of the phone if i need them. Sandra

[vivdunstan Volunteer]

It varies by person and circumstances, but lots of things can play a part: stress, environmental factors, infections, even vaccines. What affects one person may not affect another, and so on.

I strongly suspect that stress was the trigger in my cerebral vasculitis back in 1994. I also had a strong family history of auto immune diseases, so was probably more genetically predisposed to it.

I now try to avoid stress like the plague.

I had an annual flu vaccine for 9 years with no problems. Then one year it exacerbated my vasculitis. My consultant ordered me never to have one again.