Progress?

[Luce]

Hi Guys

I was diagnosed back in October and wanted to update everyone on my current situation and see if you feel this is good progress.

I originally had 6 plasma exchanges and started on 60mg pred and 3 pulses of cyclo followed by 6 weeks of oral cyclo. I was originally on 200mg but that was reduced to 150mg when they found my immune system had been suppressed too much and I was catching all sorts of stomach bugs and colds.

I am now on 17.5mg pred as my dose has been dropped every 2 weeks since diagnosis and am about to switch from 150mg cyclo to 150mg azathioprine. However I now have high blood pressure so have tablets for that, as well as Co-Trimoxazole to prevent PCP, alendronic acid to replace some of the lost calcium and omeprazole to help my stomach out.

Bad side to all this is that I've lost a fair amount of hair, have gained a fair amount of weight and couldn't do anything regarding fertility before starting chemo treatment so could be left infertile at 25.

On the plus side I go back to work next week and fingers crossed really don't have any Wegener's symptoms except feeling tired a lot.

I consider this to be good proress but am always holding my breath when I go to my clinic appointments as I expect a flare up all the time. The other problem I have is that I am still only being seen by renal doctors and can't help feeling I should be under a rheumatologist - one breezed in when I was in hospital and gave me a brief description of WG but hasn't made contact since.

I'd appreciate any comments, especially if you were treated by someone other than a rheumy in the beginning.

[crackers]

hi luce. from what you say it sounds like progress to me.i'm 2 years down the line with this and apart from the lack of muscle pain nothing much has really changed.if you're up to going back to work then that is progress in itself.i think my working days are over unless someone wants an empoyee that falls asleep every couple of hours.maybe a bed testers job,now there's an idea.anyway best of luck and stay healthy.
john

[Sangye]

Wow, Luce, I'd say that's some great progress! Two and a half years after diagnosis and I've still never gotten close to going back to work-- at anything!

My bp was high on pred, too, but came down once I tapered and has never been a problem since. Can't escape the other nasty side effects.

I think you definitely need a rheumy to oversee your care. That's usually who does it, with a nephrologist's input, if you have kidney involvement. I have a ton of specialists (no kidney problems) and my rheumy oversees the whole mess.

As far as expecting a flare up, try not to live in the future. You've got enough to deal with, grieve and celebrate right now. I think it's flat-out amazing that you don't have any symptoms other than feeling tired! You go, girl!

[andrew]

maybe a bed testers job,now there's an idea

HAHAHAHAHAHA.....excellent!

As far as expecting a flare up, try not to live in the future. You've got enough to deal with, grieve and celebrate right now. I think it's flat-out amazing that you don't have any symptoms other than feeling tired! You go, girl!

Wise words. Worrying about it won't change anything. I used to worry about it just after diagnosis but as time went on and I got stronger, the worry went away. I just keep up (MOSTLY!!!!!) with my medication and my doctor's appointments.

Agree that a Rheumy would be a good idea to manage your symptoms rather than being seen by a Neph all the time. I had a Neph and a Rheumy in hospital and I see an Immunologist and a GP now.

You're making great progress though. Keep at it but don't overdo it.

I too am infertile due to Chemo. I was 35 when I got sick so I guess I had my chance I know that this kind of thing is a big thing to deal with and you have every right to be upset (either now or later). I hope I don't sound condescending or tacky but I found that things worked out ok. I've taken a look back at my life and I can find nowhere (including now) that it would have been a good thing for me to have kids. From the crap I used to get up to, to the life I have now. If I'd had kids I wouldn't be where I am. I'm happy and mostly healthy. I have great job, I run my own company, I have great friends and a groovy wife. I am also surrounded by other people's kids whenever I feel the need to act their age. I guess I'm trying to say that even though infertility is a big thing, other things happen in life that wouldn't have been there otherwise. Give yourself time to grieve, yes, but don't close yourself off to anything.

[Luce]

Thank you all for your kind words - I am only going back to work in the mornings for the next few weeks. That way I figure I can collapse back into bed in the afternoons until I get back into my old routine.
My job is office administration for the local council so it's not too taxing physically. although there are several stationery cupboards that I expect haven't been stocked for 3 months! I've also been on full pay while sick so am very grateful to my employer for all their support and understanding.

Sangye - I know I shouldn't be expecting a flare up but I can't help thinking things have just gone too well, I'm sure I'll learn to relax in time. I'm also counting myself lucky at the remarkable lack of symptoms - my lungs and kidneys were affected but I feel no effect of this such as shortness of breath and I use the loo just fine! I have very few sinus problems, usually just feel a bit blocked up and good blow of the nose each morning seems to clear it all through for the day. Occasionally I lose the hearing in one ear or another for half an hour or so but it always comes back.

Andrew - thank you for your thoughts on fertility. Im still not sure how I feel about this one, kids were always something we thought we'd get round to in the future and chances are we still can. I can't have a fertility test until after I've been off chemo and immuno-supressants for a few months which could be a while yet.
But right now boy am I glad we don't have of the little brats - both me and partner have quite low tolerances for children and are enjoying our twenties together alone

Hopefully I will be referred to a rheumy soon, I will start to make noises about it at future clinic appointments but as this is the NHS you don't really have much control over your care.