Derek. New member

[Derek]

Hi

I have just found the site and joined straight away. It is good to keep in touch with fellow suffers of WG. I have written below a short extract of my 20 years of WG.

My name is Derek and I was diagnosed with WG in 1989. What led to my diagnosis was bad nose bleed s. The ENT consultant I was under said it was due to a deviated nasal septum which would require and operation. I had that operation in 1989 but the wound did not heal properly and so further surgical treatment was recommended. Before I had the surgery I had a nose bleed that required hospitalisation for 7 days. In that time another ENT consultant did a nasal biopsy which along with the anca positive blood test confirm WG.

It has been an emotional & physical rollercoaster since then with upper respiratory problem including bad crusting and nose bleeds, along with joint problems, lung & heart problems, weight gain. The problems I find the most difficult to deal with are the chronic tiredness & persistent dry cough with I find to be hard to cope with. I do not fly any more as I had a nose bleed once and wondered if it was the pressure inside the plane.

I still take 2 Co-Trimoxazole 400/80. Monday, Tuesday & Wednesday evening only & 15mg of Methotrexate on Saturdays. I have a sinus wash kit that I have to use twice a day and to help keep the crusting down I use Sterimar Nasal sea water wash three times a day along with prescribed steroid nose drops.
The best bit of kit I have found is Seal on nasal plugs which when they come in contact with blood expend to block the nostril and they have some sort of coating which helps to congeal the blood. These work in most cases for me and I never go anywhere without several in my pocket.
Derek

[Jack]

Hi Derek, glad you have found us.

From your description, it sounds like you still have active Wegener's and I'm surprised that your treatment is not more agressive. I had all your symptoms and many more when my disease was fully active, but the nose and sinus symptoms all cleared immediately when treated. Initially this included Cylophosphamide and Prednisolone, but eased off as remision set in.

Are you seeing a specialist Rhumatologist who knows about the treatment of Wegener's? It is a rare disease and everyone needs different medication. You need to find the right man for the job!

[pberggren1]

Hi Derek,

Glad you have joined the group. Just as Jack has said, You may still have active WG.

I have used a waterpik with a sinus attachment to irrigate my sinuses for the last 5 years. I wouldn't want to imagine living without it.

I wish you all the best.

Phil Berggren

[Doug]

Of all specialists, I have found ENTs have done the least for me. Of all specialists, ENTs have been the ones with the attitudes. I hope I am wrong about this specialty because I have had, typically, excellent care from all doctors, with this one odd exception. Next worst: oral surgeons, with a quarter of all oral surgeons in my "I won't go back to that guy" corral. Derek (...and welcome to the site!), what other specialists have been involved in your care? Most of us have been to rheumatologists, ENTs, pulmonologists, etc. I agree with the others about you seem to have an active case, from symptoms mentioned, but have any of the doctors given you numbers and stated "Your cANCA is such and such, which is in the normal range, as are your ...."? How often does your primary care doctor have you back in? You'll find we are a nosey bunch, but we've all gone through our own versions of your experience. I think you are next to Jack in terms of time since diagnosis. Like Jack, the cough went away once the Cytoxan/Prednisone hell started to work. In my case, which is the severe form as I had kidney involvement, too, the dialysis/plasma pheresis combo did a lot to get me on my feet, deal with that joint soreness, the sinus involvement, the malaise, etc. so that the Cytoxan/Prednisone combo could bring my njumbers down to manageable levels and remission.

[Jack]

I'm not keen on jumping aboard an anti ENT bandwagon, but I was getting a bit too close to death before I was referred on to a Rhumatologist! A lot of permanent damage had already occured by that time.

[Luce]

Jack, this is what I worry about because I'm not being seen by a Rheumy - how much do nephrologists know about WG? I don't like being treated from a textbook, I want someone with experience.
I don't think my treatment is suffering at the moment as I feel so well, but how do I know?

[Derek]

Hi Derek,

Glad you have joined the group. Just as Jack has said, You may still have active WG.

I have used a waterpik with a sinus attachment to irrigate my sinuses for the last 5 years. I wouldn't want to imagine living without it.

I wish you all the best.

Phil Berggren

HI Phil

Thanks for the advice and your concern.

Derek

[Derek]

Hi Derek, glad you have found us.

From your description, it sounds like you still have active Wegener's and I'm surprised that your treatment is not more agressive. I had all your symptoms and many more when my disease was fully active, but the nose and sinus symptoms all cleared immediately when treated. Initially this included Cylophosphamide and Prednisolone, but eased off as remision set in.

Are you seeing a specialist Rhumatologist who knows about the treatment of Wegener's? It is a rare disease and everyone needs different medication. You need to find the right man for the job!

Hi Jack.

Thanks for your advice and concern, hope you are OK

Derek

[Derek]

Of all specialists, I have found ENTs have done the least for me. Of all specialists, ENTs have been the ones with the attitudes. I hope I am wrong about this specialty because I have had, typically, excellent care from all doctors, with this one odd exception. Next worst: oral surgeons, with a quarter of all oral surgeons in my "I won't go back to that guy" corral. Derek (...and welcome to the site!), what other specialists have been involved in your care? Most of us have been to rheumatologists, ENTs, pulmonologists, etc. I agree with the others about you seem to have an active case, from symptoms mentioned, but have any of the doctors given you numbers and stated "Your cANCA is such and such, which is in the normal range, as are your ...."? How often does your primary care doctor have you back in? You'll find we are a nosey bunch, but we've all gone through our own versions of your experience. I think you are next to Jack in terms of time since diagnosis. Like Jack, the cough went away once the Cytoxan/Prednisone hell started to work. In my case, which is the severe form as I had kidney involvement, too, the dialysis/plasma pheresis combo did a lot to get me on my feet, deal with that joint soreness, the sinus involvement, the malaise, etc. so that the Cytoxan/Prednisone combo could bring my njumbers down to manageable levels and remission.

Hi Doug

Thanks for the advice and concern. I have seen rheumatologists, ENTs, Chest consultant for gas breathing tests, and Cardiologist. Heart Stent put in, October 08. I see my rheumatologist ever three months but have monthly blood tests. I will find out what the cAnca range is when I see him in May. I am told that mine is unusual in that it flares and when under control again the cAnca never disappears but always remains positive although low. He says that he would not wish to do anything too aggressive unless it remains much higher. He also does a proteinase 3 blood test which he says is more relevent to WG. Have you ever heard of it. I have not been checked for it but after reading some of the members symptoms on stenosis I am concerned that my breathing problem could be linked to it and I am going to push the consultant about it.

Thanks again hope you are feeling OK today.

Derek

[Luce]

Derek, I can't believe you live in Poole - I'm up the road in Christchurch and lived in Canford Heath for about 20 years.
As I understand it the Proteinase 3 (PR3) is part of the cANCA test and is the specific protein produced by autoantibodies when dealing with WG.
Can I ask where you're being treated?