My WG journey continues

rituximab is a good option I think. they don't like us to be on cyclo too long.

hope things go well.

regards,

sandra.

I don't think this is a funding issue, suffolkgirl, rather the Addenbrookes doctors (lucky you for seeing them!) have noted your lack of vasculitis activity and, quite rightly, deducted that the cyclo and pred had put you in remission and so now you no longer need anything as strong as ritux, azathioprine, presumably taken alongside pred, will be the best thing to keep you there.

You are in the best medical hands, so relax and be glad, it all seems to be working out ok. Mention the hip pain to them, though, although, as you say, it is likely to be caused by something other than the vasculitis. Good luck!

Ayla

I agree with Ayla, it appears to be a 'normal' process to have a sledgehammer drug to put V into remission then on to a maintenance drug, like Azathioprine to keep it there at which point the steroids get slowly reduced. My husband is on exactly this path atm so stick with it. Best wishes

Sounds to me as if things haven't been well explained to you...looks as though as your biopsy was clear you're winning the battle and so you only need azathioprene and reducing doses of preds to keep things stable. The weight gain due to the steroids is a problem but as you get off them you should be able to lose it. Keep your chin up, you're obviously doing well and I'm sure that you'll be getting the best treatment possible at Addenbrookes !! Best wishes from WG sufferer and husband of "pitter patter"

Thanks for all your responses. They haven't actually used the word remission, so not certain that's the case. Have to wait and see what Azathioprine does. I haven't actually got any yet. Losing weight with a painful hip isn't going to be that easy, as I'm not able to exercise much!

However, although I still get quite depressed about my nose, I'm not giving up just yet.

I agree with all of the above comments which sounds like standard treatments to get you into a remission and hold you there.

As for the hip pain, in some patients high dose steroids can induce bone necrosis of the hip so you'll need to pay very close attention to this possibility. I hope this is not the case as the solution likely involves surgery. Good luck.

Lots of stuff can happen in the nose, sinus and upper/lower respiratory tracts! You are not the first and won't be the last! Were you ever treated with antibiotics for a sinus infection? With the nasal biopsy did they do a bacterial culture? For some the antibiotic Bactrim can be beneficial, add it to your list of questions for your Doc's, they will know about it.

Hi Suffolkgirl.

I was diagnosed over 14 years ago whilst I was a nurse, with WG and have been attending Addenbrookes for the last 6 years,under the care of Dr David Jayne. He is fantastic and I have total faith in him and his team. I also have Chronic kidney failure, not caused by the WG but a congenital problem. I have ' saddle nose ' deformity and a massive hole in my septum, Caused by the delay in diagnosis, but have decided against reconstructive surgery. I also use Bactroban nasal cream twice daily to help prevent infections. Addenbrookes ENT team take regular nasal swabs and then treat accordingly.

I have Rutiximab every 6 months as all other medications have not been successful in maintaining my 'remission'. I too experience joint pain which I take paracetamol for. I also have regular bone density scans.

I dont believe funding is an issue as I was previously living in Essex when I first started going there and last month I moved to Suffolk. If when you feel better you would like to meet up in Ipswich I would only be too willing too as I remember how frightened I was when first diagnosed all those years ago when there was very little positive literature around or websites like this one. Stay positive and don't be afraid to ask all the questions you want answers to when your at Addenbrookes. They encourage this.

Take care Jill x

Ps you can read my blog on how I was diagnosed.

Yes, I am a WG (GPA-W) patient for 18 years and doing quite well but it is not always so easy. My sinus infection and other related issues also preceded my diagnosis and the battle with sinus infections continues to this day. Even after many creative sinus surgeries I am much better but still not 100% clear of sinus infections!

As you will learn, remission equals absence of symptoms and, ideally, normalized or much improved and stable blood and urine lab results. From experience, and to detect/prevent the disease advancing/relapsing to your kidneys and lungs, I would highly recommend regular lab work until you are in a very strong and stable remission. I still do monthly labs as I remain pr3 ANCA positive with sinus infections.

Sounds like you a getting good care but don't be afraid to engage your doc's with questions etc. And with WG, the more you know yourself the better.

Morning Suffolkgirl.

Thanks for the reply. It was interesting to read you had donated a kidney to your brother.

Yes it's a real shame Johnny is leaving, but I'm sure the next one will be jut as nice.

Just let me know when you want to meet up.

Have a lively weekend, hopefully we will have some sunshine.

Jill

Xx

I was previously involved in setting up and running a support group in Essex for many years. Im afraid I do not have the time or a willing 'body ' to start up one in Suffolk. Sorry.

Jill