hamble99bVolunteer

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

hope things go well.

regards,

sandra.

suffolkgirl in reply to hamble99b

Yes, but I'm not now getting Rituximab! Going onto Azathioprine.

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hamble99bVolunteer in reply to suffolkgirl

oops!

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AylaVolunteer

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

Nadine99

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

pitterpatter

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"

suffolkgirl

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.

sjpv in reply to suffolkgirl

Never give up! If there is a will there is a way. Keep going, you are on the right track.

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sjpv

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.

suffolkgirl in reply to sjpv

I have had some trouble with the hip long before I was on steroids, so I think it's more than likely that the increased weight due to the steroids has aggravated it. Should hear next week what the x-ray showed up.

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sjpv in reply to suffolkgirl

The x-ray should clarify this. You may, or may not, have been advised that steroids can play havoc with your bones and there are meds, and other ways, to help combat this thinning and weakening effect called steroid induced osteoporosis. You might also consider getting a (dexa?) bone scan which can confirm if the steroids have impacted you.

As for your nose, (likely saddle nose?), it can be nicely and easily fixed with surgery once you are in a stable remission.

Ask your Doc about the above on your next visit as they know all about it.

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suffolkgirl in reply to sjpv

The "nose" is not saddle nose, but a hole in the side of my nose! This may not be quite as easy to fix, but I'm assured that the plastic surgery team at Addenbrookes will do their best when the WG is settled enough. I have yet to meet one of them, but it's in the plan!

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sjpv

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.

suffolkgirl in reply to sjpv

Way back this time last year, before diagnosis, I was given several courses of antibiotics

for "sinusitis". I had swabs taken before this latest biopsy, so I'm sure they checked everything out. I use Bactroban ointment.

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sjpv in reply to suffolkgirl

This is a classic story and of course the antibiotics didn't work! You might want to add some other questions for the Doc's... what if anything did the swabs culture? If they did culture something, was that something sensitive to Bactrim? And, is the infection gone now? How about what caused the perforation in the nose? Tissue destruction from restricted blood flow or maybe infection? WG patients are "special" cases and there are lots of unanswered questions!

Keep up the fight, you will get better.

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suffolkgirl in reply to sjpv

I'm sorry I can't answer all your questions. I think my update has got a bit out of hand! Are you fellow sufferer and if so what was your diagnosis? (or are you a dr?)

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Essex-jill

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.

suffolkgirl in reply to Essex-jill

Hello Jill,

Interesting to read your experiences.

As I've already said, I don't have a hole in my septum, but a hole in the side of my nose, which is rather different! This would probably not have been so bad if diagnosis had been made sooner.

Johnny has recommended use of Bactroban on a two weeks on/ two weeks off cycle. (I wish he wasn't going to leave!)

I would like to meet some time if we can arrange it. I live near Bury St Edmunds, but have family members in Ipswich.

I was interested in your comment about transplantation, as I donated a kidney to my brother about 14/15 years ago. If your sister goes ahead with living donation she will most likely have laparoscopic (keyhole) surgery as I believe that is now the norm. My surgery was much more traditional as that was the norm here, although it was already being used in the USA. Unfortunately the kidney failed after about 10/11 years, but he received a cadaver one last year which is still working.

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sjpv

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.

suffolkgirl in reply to sjpv

Well you're obviously an old hand and I'm still very much a newbie! I believe that the destruction of my nose was caused by the WG rather than an infection. It might not have been so severe had there not been a delay in getting the first biopsy done, after which the diagnosis was made.

I do ask questions, but maybe not as many as I should. However, I'm not sure I would fully understand all the test results if I had them.

As far as I'm aware I've always been ANCA negative. That is why initially the first ENT specialist ruled out WG. Of course I discovered later that the test wasn't 100% proof.

I've been advised to use the Bactroban on a two weeks on/two weeks off cycle, mainly I believe, as a precautionary measure.

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sjpv in reply to suffolkgirl

For a newbie you seem to know quite a bit, which helps. There is lots of good info out there but it takes time to find it. On lab results have a look here: vasculitis.ca/labresults/va...

And here are a couple more good sites: niaid.nih.gov/topics/wegene...

vasculitisfoundation.org/ed...

Diagnosis is always difficult and often takes too long, but your ENT doc is on the right track now so things will get better.

Confirm your ANCA status as being negative all a long, this is very rare but happens. It could be that your were positive at one point and treatment switched you back to negative which is the ideal outcome as being ANCA negative generally reduces the risk of future relapses. And, the ANCA should be repeated from time to time, although not 100% it is still a very useful test as many believe ANCA is a critical marker, as for most absence of ANCA equals absence of disease, and this why Ritux in particular works so well, Cyc has a similar effect but less targeted.

Where your are being treated is also a research site so I wonder if they preserved/froze your positive biopsy result as these can be very useful for researchers, would be interesting to know if they did.

From my experience absence of sinus/nasal infections is very important so do what you can to eliminate these infections. Bactroban should help.

Maybe you and Jill can start a local group with others which can help too.

Good luck

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suffolkgirl in reply to sjpv

Whoa there! Hold on a bit! I've only recently attended my first meeting of the Cambridge group, so I don't think I'm ready to start a new one yet and of course I can't speak for Jill. I have no idea if there are any other sufferers in Suffolk, but there were some from Essex at the Cambridge meeting.

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sjpv in reply to suffolkgirl

Sorry for the overload, but you'll be an old hand in no time! And, there is strength in numbers!

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Essex-jill

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

Essex-jill

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

suffolkgirl in reply to Essex-jill

That's ok. I quite understand. I'm not going to do anything like that either. It wasn't my suggestion!

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