Oh bother - having a flare!

[pwc51]

I could not have worded my thoughts more succinctly than Hammy8241 has put it!!!!

[Kimbangu]

I think we've all got this in front of us mate. There seems to be an emotional roller coaster. I was diagnosed at the same time as you and I have been thinking about your post a lot today. It's like having a sword hanging over you-you'll get through. 60 mg of pred? - just keep out of that fridge Okay!

[Jack]

I think we've all got this in front of us mate.

Not all of us, around 50% so it really is just down to luck.

Everyone has a sword hanging over them, it is just that they are often not as aware of it as we are.
Think of it as character building!

[eileenv]

Sorry to hear your having a flare and have to go back on the high dose of pred and ctx but looks like you have a good rheumatologist who's on top of things, take care.

[pwc51]

Fridge will remain firmly shut - well, at least between the times that I open it!

I have a rheumatologist who is always keen to hear from me as he has relatively few WG patients compared to his 'normal' rheumatology patients. I sense he is keen to ensure he is aware of any issues that may arise between appointments (as indeed this flare has) as this also helps build his knowledge base. I don't contact him too frequently but when key events / changes happen I will usually drop him a note to determine the significance. In this latest incident I should probably have contacted him a bit earlier but, as ever, there is a tendency to think it is not happening and the symptoms will go away. In this case they did, but then came back worse! The key symptoms being the roaming joint pain.

Despite his relatively low patient base he diagnosed my initial condition within 5 minutes of meeting with him for the first time (a diagnosis confirmed by subsequent scans and tests). I know, too, that he works with a couple of other rheumatologists when it comes to WG patients so the experiences are shared. He seems extremely competent in the treatment he prescribes - it is always carefully analysed and described. Plus, of course, I am able to do a sanity check by using forums such as this, reading WG medical papers and talking to members of my local WG support group - so, as best I can be, I am comfortable with the medication plans (bearing in mind that we are all different).

[eileenv]

Hi pwc5, I was intrested to read that you have a WG support group in you area i am in romford, and as far as i'm aware there are no support groups around here.

[pwc51]

Hi eileenv - the group is a more generic Vascultis support group but a significant proportion of those attending the Surrey group are Wegener's sufferers. Please try this link - Stuart Strange Vasculitis Trust . It looks as if there could be someone local to you. They also produce an excellent newsletter which is well worth 'subscribing' to.

[JanW]

The 50 percent number that Jack speaks of seems like on that experts are well on their way to revising -- what I heard clearly at the Symposium is that most WG patients should expect at least one relapse after their initial remission.

But it is still all down to luck. And very few of us can't obtain remission at all (way less than 10 percent) so that's the good news right there too.

[elephant]

That sounds more realistic. Like any other autoimmune diseases, many of them flare continuously and have a hard time controlling the disease ( autoimmune). Why do I know this, I saw this continuously in the hospital.

[pwc51]

Elephant and JanW - thank you for the excellent feedback. That is most interesting and the 'less than 10%' figure is encouraging too, just hoping I stay out of that group!