A flare or just 'symptoms'?

[laidbackreader]

At the beginning of April I swallowed my last 1mg of pred, having started on 30mg for a flare of CSS that began February 2012. Within a week I was experiencing breathing problems and my peak flow was dropping. This week I have been having lots of joint pain which is something I haven't had for years.

I've been living with CSS since Dec. 2003 so I usually recognise flare symptoms. This time it's odd because my bloods are coming back normal. My GP isn't happy with how I'm feeling so has started me on 5mg daily of pred to reduce to 4mg in a month. I'm also taking 100mg of azathioprine daily. He says that previously my blood results have changed some time after symptoms have appeared.

I feel both relieved (I might start feeling better) and disappointed (being back on pred.) I'm also confused. Is it possible to have vasculitis symptoms without it being a proper flare?

[vivdunstan Volunteer]

It's possible for bloods to be normal in a flare. Doesn't make it any less proper a flare.

Symptoms are the best guide. And a good GP and consultant should know not to rely on blood test results. And it sounds as though you have a good GP.

Are you being referred back to your consultant?

[LynneJ Vasculitis UK Volunteer]

HI

Might your Aza be too low. I am on 150mg but it does go on your weight. Just a thought.

Lynne

[laidbackreader in reply to LynneJ]

Thanks LynneJ. Yes, this fits as I was told to stop Aza for 5 days a fortnight ago as my neutrophils had dropped too low.

[laidbackreader]

Thanks for the very quick answer vivdunstan. I have the direct number for my consultant and I can ring if I have any concerns. I'm happy with my GP. He told me yesterday that he is still 'haunted' by not recognising my symptoms back in 2003 before I had two strokes.

I think he is very clued up now.....not least because I gave him a copy of the Route Map! I have to ring him with a report of progress at the end of the week so I feel safe in his care.

It just feels odd as my ESR and CRP have always shot up with earlier flares but not this time. Makes me feel a bit insecure about knowing what's going on!

[vivdunstan Volunteer in reply to laidbackreader]

Just go with the flow really! I was the other way around: when I was first diagnosed, 3 years after falling ill, all my bloods were normal. I have cerebral vasculitis. It's only in more recent years that the PV (sort of equivalent to ESR) has started to be a useful guide. And my CRP now constantly runs in the 30s/40s, despite massive immunosuppression. But even now the medics don't rely on my bloods, and go on symptoms as the best guide to how I'm doing.

[notsossweets]

I never go without symptoms. I just have fewer some times vs. symptom-free.

It's very hard to get off of Prednisone. It's 100% effective if given a high enough dose, but the long-term effects are awful.

In fact, I was not able to get off of it until my docs introduced an immuno-suppressant (CellCept/Imuran/the like). However, if I compare the two, Prednisone is 100% effective, then CellCept is 65%. It's better than being on Prednisone as far as side-effects, but my symptoms are not 100% under control.

I'm not even coming close to answering your question.

It really doesn't matter, I suppose, if it's a full-on flare or not. It's just a matter of getting your symptoms under control.

I WISH YOU ALL THE BEST AND HOPE YOU GAIN CONTROL OF THOSE SYMPTOMS SOON!

Rhonda

[Derek]

I've had CSS since 2009 and one relapse plus a significant flare last November. Apart from my 'usual' symptoms from day one, over the past 15 months or so, I have lesions and periodicaly a few white spots appear on my nose. Intermitently the lesions become angry and raised, which of course makes me selfconcious, so I'm wondering if this is a form of flare each time it happens. While the spots do disappear, my nose around the nostrils is permanently marked where the lesions are and at times I resort to using a blemish concealer. When the lesions become angry I am wondering if this is possibly a 'mini' flare situation. I have shown this problem to my consultant who, as yet, has not offered a reason for its manifestation.

[AndrewT]

I have 'uncategorised' vasculitis, for about sixteen years now, and am on dialysis, three times a week. I have also been on Prednisolone and Azathioprine, for the same time. In my case it's kept me alive against considerable odds, I was given hours to live.

Anyway stay well, some hope!

AndrewT

[laidbackreader]

Thanks to you all for these helpful replies. This crazy disease baffles me sometimes. I have been on pred (varying doses) for much of the last nine years. Every time I manage to get off it, something happens within a short time and I'm back on it again. Maybe my body just doesn't work well without it now? I'll be back to my GP next week and hopefully be feeling a bit better by then.

[tintinrob]

Hi laidbackreader,

I too get flares of my CSS which affect my breathing (also get roaring / hissing noises in the ears, the 'runs', extra nerve pain) - this even though my eosinophil count is in normal region. Makes me think that something else must be a better blood marker for a CSS flare. Normally have to take about 25 - 30 mg preds per day (nothing else working yet) - during a flare I boost the preds to 45 mg per day for 4 0r 5 days (gp's suggestion), this gets it back under control. Just have to be vigilant - bloods are good but how you feel is key to controlling it I think. Main thing - avoid the flare - if preds only thing that works for you - like me - I hope to preserve my lung function, which is ...not good. I'm getting cataracts from preds - but it's Hobson's Choice as far as I can see. However, I start Rituximab TOMORROW 20th May 2013 so fingers crossed, if it works, fewer preds to take maybe ...whoo-hoo!

Hope it goes well for you. Don't reduce the preds too quick! Rob.