5 years into this new life

[PJ2010]

Hello to everyone,

its taken me a long time to find such a forum/support group.

I've been reading stories from here for weeks and I've only now raised the courage to join in.

I was diagnosed with Wegener's in 2010 and feel I've been to hell and back. I live in a small city in Victoria, Australia and I think no one else is suffering this disease here. I've felt very isolated. Even the doctors don't seem to know the disease.

Anyway, at least now I have a whole group of new friends who understand. :biggrin1::biggrin1:

[me2]

I'm glad you decided to dive in and introduce yourself. You won't find a nicer group of people- and we all know a little or sometimes a lot of what you are talking about. Whenever you feel like telling more of your story it would be great to hear what problems first presented themselves, how you got diagnosed and what your current treatment is. Most of us here have visited portions of hell and would recognize your trip from a verbal post card. Its a card we send to people that says 'Glad you're not HERE'.
I live in the US in Washington state. At the time I got ill I had never heard of the disease and I didn't meet someone with it for another 17 years - so I know about the isolation part.

Since you live in a small city do you have to travel far to get treatment or are they able to help you there where you live?

[PJ2010]

Thanks for your response.
We do have reasonably good medical facilities here, however, very few doctors I've met so far are up with Wegener's.
At times in hospital I noticed the nurses referring to information about the disease from Wikipedia!!! That made me feel uneasy.
I was diagnosed in a good hospital in Melbourne which is about 100km (60 miles I think) from here.
From all I've read I believe I'm not receiving the correct treatment here. They had me on Cyclophosphamide for about 1 and a half years. Way too long.
I don't know what to do.

[annekat]

Welcome to the forum! I'm by nature a pretty shy person, so it took me a couple of months to start posting, but once I did, a whole world of friends, information, and support opened up. From what I've learned on here, I've been able to help others, though I don't know as much as some members. I certainly know more than I'd ever learn from any doctor, and like you, am able to assess from the info here whether or not I'm getting proper treatment.

Cyclophosphamide is a very effective drug, and I think it used to be more common for people to be on it for as long as you were. Now they try to keep it to 6 months or under, I've gathered. I was on it for at least 8 months myself, although at a reduced dose part of that time. I think I could have been taken off it sooner. I'm now on methotrexate, have been for a couple years, I guess, along with prednisone and Bactrim, and am wondering if they have transitioned you to something else as well. I wouldn't worry too much about the year and a half on CTX; what's done is done, and I hope you drank lots of water during that time to minimize it collecting in your bladder. In any case, I don't remember reading of anyone on here who actually got bladder cancer from extended CTX use.... I could be wrong. But just keep being proactive in making sure you are getting the best treatment you can.

I know almost nothing about Australia so don't know if you are near other Aussie members of the group. But there are quite a few of them, and I hope you can get some advice, if you need it, from some of them, on where you might get treatment you are more confident in. There is a Weggie Forum members map you can access at the top of each page, highlighted in blue. You can add your name there if you wish and see where other Aussies have added theirs. No doubt, at least one of them will be responding to this before long.

Good luck, and keep us posted!

[lag713]

Welcome PJ! I look forward to learning more about your experience. I think if I heard my doctor quoting from Wikipedia then I would have a heart attack... As Anne mentioned, there are quite a few Aussie Weggies out there for you to connect with as well. I hope you find this forum to be helpful and supportive!

[PJ2010]

Thank you Anne,

I intend to write and post my story soon. For the last two years I have not been on any medication at all. The side affects, especially from prednisone, were so bad I stopped all my meds without the knowledge of the doctors. At that stage I thought I was facing death as a result. It caused an outrage from my doctor but they soon learned it was for the best.

Right now I have an infection in my sinus which I've had since the beginning. I don't have as much energy I used to have. I have night sweats and haven't slept a full night in four years. My teeth are blackening and many have broken as a result of the meds. I've lost a large part of my hearing. I have pains throughout my body but that could be related to age. Apparently X-ray's have revealed some damage to my lungs and I have a persistent cough which started early in the disease. I have permanently numb soles of my feet and it seems I feel the cold more than ever. And I wear the traditional saddle nose. The most life changing problems are that I have lost the sense of smell and taste. And I have a fungal infection on the finger nails which won't clear up.

All in all, not too bad aye?

I still work full time repairing cars. Thank god I'm still able to work. :rolleyes1:

[annekat]

Well, PJ, I don't have all the lasting effects that you have incurred, but if it makes you feel any less alone, I'll list the ones I do have: loss of energy, loss of hearing, odd pains in body, numbness of feet, loss of some breathing function due to lung damage, persistent cough, saddle nose, and loss of smell. Can still taste OK but it has probably become less intense. In my case, the persistent cough is not from lung damage but from drainage of mucus into my bronchial tubes, which collects there and then must be coughed up. I think all these things are pretty common among the members here. Some of us, including me, also have extensive erosion of bone in the sino-nasal area, so that it becomes one common cavity in there with the sinus walls, turbinates, and septum missing... this may or may not cause a lot of problems for some of us. It gets complicated, and each case is a little different. I'm one of the lucky ones who has no kidney involvement so far and I hope you are one of those as well. It's also great that you are still able to work. I make pottery and sell it, as much as I'm capable of, along with getting a disability benefit from the government. I can't get by on just one or the other. Anyway, looking forward to hearing more when you are ready.

[pwc51]

Hi PJ - I was diagnosed 5 years ago. I have been through the common treatments - Cyclophosphamide and, when that did not work, Rituximab. I have had 2 significant flares but it seems reasonably under control at present with Methotrexate. I had lung damage, kidney damage and hearing loss - the treatment rapidly restored my hearing and exercise meant my lungs recovered. Kidneys are much better than they were. I would not say I am well but feel well enough to travel to the US - I am currently in Houston on business (my fourth trip in as many months!). For the year running up to this I really did not feel I could travel, although I worked full time in the office. It sounds to me as if it is still grumbling away for you and maybe some medication might improve the situation? As we are all different and at different stages there is no 'one size fits all' in terms of treatment so it is essential to consult the specialists for the most appropriate advice. I recently spoke to an ex doctor (he is now in IT) who was very knowledgeable and it was good to hear that my consultant is doing what he considers to be 'the right thing;'!

I wish you all the best and hope you enjoy the company on this forum which keeps us informed and entertained - especially when we feel alone with this condition!

[Debbie C]

Hi PJ and welcome to the "family " There are a lot of Aussies on here and I'm sure they will be able to advice you on where to get some good medical attention.There is even a facebook page set up for people in the land of Oz ! You definitely need to be on something. What were the problems you had with pred ? This is a world wide forum so someone is usually on it ,so anytime you want to talk ,vent,ask questions or just chat we are here. Good luck in getting the proper medical care you need. Take care and keep us posted !


And PWC it is so good to here that you are feeling so well to be able to travel so much !

[PJ2010]

You are all beautiful people.

[PJ2010]

Thanks mate.

[Psyborg]

Welcome to the Forum PJ. Hopefully some of our Aussie friends can give you some good treatment insight. I would say that if the care would be better, it's worth that 100 KM drive. I go about 250 KM (I think...my conversion abilities are bad this morning :) to get the best treatment I can.

[drz]

Welcome to the Forum PJ. Hopefully some of our Aussie friends can give you some good treatment insight. I would say that if the care would be better, it's worth that 100 KM drive. I go about 250 KM (I think...my conversion abilities are bad this morning :) to get the best treatment I can.

I think most of us drive or travel some distance to get care for our Wegs. I drive 450 KM one way to see my Weg expert and 280 to see other doctors for Weg related issues. Other health issues only require trips from 1 to 100 KM one way.

[Jaypfei]

Welcome to the family PJ. Sorry that it took five years to find us, but now that you have you'll find someone on this site 24-7, so if you have questions or just need to talk, we're here.
Yes, one and a half years on cyclophosphamide sounds a bit too long. I had sinus, ear and lung involvement and was only on cyclophosphamide for only six months.
I'm pretty fortunate that I don't have to drive very far to see my Drs. My Rheumy has treated many vascies and Wegs. So between him and my Drs on the military base I feel like I'm in pretty good hands.
Hopefully some of the Aussie members can give you some advice on Drs .
Again, welcome to the forum.

[PJ2010]

Next week I finally get to see my specialists. They have me on six monthly visits.
Im bit concerned what may come of it because I have an infection in the sinus, minor hearing issues, a bit tender on the scalp and I have blood in my stools.
Sounds bad but I always feel not right and I'm used to it.
Maybe its a flare. I don't know. All I know is I just hate being on meds.

[mishb]

Hi PJ.

I should have checked in the member introductions before saying HI on your other post.
I have no idea why I didn't see this thread before - anyway, Hi There :tongue1:

I'm sorry that you feel so alone (well you aren't anymore), I know a few people that are treated in Ballarat so I guess you need to get sent to the right person.

One dude that knows his stuff is Professor John Richmond at Ballarat Base Hospital.
He is a General Physician and a Nephrologist.
Please look him up.

[PJ2010]

Thank you for your thoughts Michelle.
John Richmond is my specialist. Unfortunately he is retiring soon.
He is a very busy man and even though I rarely see him, I see other doctors under his guidance.
You say you know a few others he is treating?
Are they Ballarat people? :).

[mishb]

Two are in Ballarat and the other from up Horsham way.

I didn't know he was retiring :crying: I hope he has geared the right person up to take his place.

[Swb21188]

:unsure:

I can relate to your problems. I live in a Northern NSW and have to travel to Newcastle (5 Hours) to see my Rhuem/ ENT doctors or to have infusions. Can I suggest you contact the hospital in Melbourne where you were diagnosed and ask if they can give you the name of someone closer to you who is up to speed on WG. My Rhuem (who seems very knowledgeable on WG) told me you can only have cyclophosphamide for six months. Then you have to change to another treatment.

[mishb]

Thank you for your thoughts Michelle.
John Richmond is my specialist. Unfortunately he is retiring soon.
He is a very busy man and even though I rarely see him, I see other doctors under his guidance.
You say you know a few others he is treating?
Are they Ballarat people? :).


Hi Peter,
We haven't heard from you for a while, I hope things are going well.

I heard some terrific news today. Professor Richmond is not retiring anytime in the near future.
This means that the Ballarat hospital gets to have his expertise a lot longer.

[PJ2010]

Hi Michelle
thanks for that good news.

Ive been a little preoccupied lately with a new health issue. A while back I said I had blood in my stools. Well it turns out I have a number of polyps in my large intestine. Have had two visits to hospital to have them removed. This Monday I have another visit. At this stage all is well. No Cancer. The last large polyp may be a problem.

As as far as the Wegener's it still remains in the background. Still suffer very sore eyes, blood from my nose, my hearing is not too good and constantly tired. I have learned to live with this. I'm not on any meds. So far I don't think I've had any relapse. I must admit I feel awful all the time. I don't go to the doctor at all to complain and am only seeing the specialist every six months. Unless this disease floors me I'm staying away from doctors.

I hope you are well. I'll touch base when I find out more. :)