New and confused

[Bettie]

Hi, I'm new here having just been diagnosed this week. I've had X-rays, blood tests and urine tests but no answers until August 18th. I've had a biopsy from my nose which has confirmed my diagnosis. I have saddle nose which is why I went to the Drs. Just wondering if it's possible that it will just be my nose affected and if I'll have to go on all the drugs etc. Kind of wish I had know it was coming so I could ask the dr. I thought I was just having an appointment to tell me when she could rebuild my nose, I was even excited and now feel like someone pulled a rug from under me. Any advise would be truly appreciated

[mishb]

Hi Bettie and welcome to the club that no-one knows about, until it's too late.

I'm sorry you have been diagnosed with WG, but glad you are here.

If it is only in your nose, and you don't have an joint pain or any other symptoms, then you are very lucky.
Unfortunately, it may not just stay to your nose. The nose and sinus area's are also connected to the ears, which may become involved.
Hearing loss is one of the symptoms, amongst many. There also could be eye or throat involvement.

The best possible course of action is to follow a medication treatment. Medications will help to slow the progress of the disease and also stop the nose from collapsing even further. There is no point getting the nose fixed, if you are not having treatment for the cause.

Where do you live, and what type of specialist are you seeing?

[Bettie]

Hi Michelle,

thank you you for your response. I've been referred to a rhumetologist here in South Wales UK. I've had joint pain but all manageable and a lot of my symptoms I'd put down to just getting older. I've had bleeding in my left eye which I'll need to mention to the consultant when I see them next. It's only reading through people symptoms I've realised this has been going on for quite some years and I've just been so busy I've not noticed. I've two small children so life's a whirlwind and I've been exhausted for years. It feels like such an unknown waiting game right now. Just waiting for this roller coaster to start ����

bettie x

[Pete]

Hi Bettie,

Welcome to the "club". This is a place where you can learn a lot about our dumb disease.

To gauge your new rheumatologist's GPA expertise, you may want to ask how many Vasculitis patients s/he treats in a year. If it's a small number, you may want to either be seen or have your doctor consult with a Vasculitis specialist. (There's a list on the Vasculitis Foundation web site.)

It is possible to lead a close to normal life with GPA. Take your meds as prescribed, lead your life as fully as possible, get some exercise (within reason), and eat healthy. Four years ago, I was coming off a major flare and was unable to do much of anything. Now, I lead a life that's very similar to my pre-GPA life, which was pretty active.

You mentioned confusing GPA symptoms with those of aging. I can relate as I turn 70 next month. If you have a new symptom, follow it to see how it progresses. If it persists, talk to your doc and see what treatment is recommended. I had roaming joint pain (sore hip for a few days, pain free for a few days, new pain in knee, etc.) that turned out to be the beginning of a flare. Just be aware of what your body is doing.

[gilders]

Hi Bettie and welcome.
I'm also in the UK and it frustates me so much that hospitals seem to drag their feet. Waiting until 18th August for answers is just not good enough.
The main thing is that you have been diagnosed before major organ failure, such as kidneys.
As soon as you know what the treatment plan is and what's been effected beyond your nose (hopefully nothing), we'll probably be able to give you useful advice.
In the meantime feel free to ask any question. There are no silly questions so go for it. You'll probably come across lots of "short hand" and abbreviations for meds and symptoms as there's lots of veterans on here. Just ask if something doesn't make sense :rolleyes1:

[Middlesista]

Hi Bettie - some very good advice here. I esp agree with making sure your doc is well versed in vasculitis.

You might think about asking if you can be put on a cancellation list as the sooner you start treatment the better

take care and know that you are not alone.

[Alias]

If you have active GPA, that is a long time to wait for specialist follow up. I try to not say anything that sounds like actual medical advice, but it seems like you should be started on the standard medical protocol for GPA if you have been diagnosed with it, in order to halt the inflammation and start progress toward remission. Usually that would involve prednisone and an immunosuppressant of some kind.

[mishb]

It isn't the most ideal situation but sometimes it's how appointments happen, unfortunately.

I never told anyone on here, (because I didn't want a bundle of people writing back telling me that I could die), that I was diagnosed in August 2010 and had my first ENT appointment in the December of 2010. They then booked me in for a sinus biopsy to confirm WG, (because I had positive c-anca, p-anca, and ANA) which happened in February, 2011. ENT then referred me to Rheumatology and my appointment was 5 weeks later in April, 2011 and Rheumatology put me into hospital straight away due to blood in my urine, and this is when they started me on prednisolone and Methotrexate. Therefore 8 months after diagnosis, was when I started on meds.

As I said, it's actual not the ideal situation for anyone Bettie, but it can sometimes be okay.

I'm still hoping that you can manage to get an early appointment via cancellations.

[little sister]

I second the advice to get on a waiting list for any open appointments. Also, maybe see if the doc that diagnosed you can put pressure on for a sooner appointment. Don't be afraid to be pushy. It's important.

[Alias]

Or get the doctor you've seen to start you on appropriate meds while you wait for you specialist appt. I agree you need to be pushy, and that it's important. These could be crucial weeks/months for your long term health that are passing while you are politely waiting.

[annekat]

Or get the doctor you've seen to start you on appropriate meds while you wait for you specialist appt. I agree you need to be pushy, and that it's important. These could be crucial weeks/months for your long term health that are passing while you are politely waiting. I agree with this completely. Now that you have been diagnosed, you shouldn't have to wait for your specialist appt. to get treated. Any doctor can, with a little research at least, find out the appropriate meds to start you on, and with your mainly nasal involvement, it would probably be an immunosuppressant like methotrexate and, for sure, prednisone, the anti-inflammatory that we all depend on. I agree that you should get pushy and insist on treatment right away. It can always be changed by the future rheumatologist, as there are quite a few options, but you will have gotten a head start on controlling the symptoms and slowing down the progress of the disease and the damage it can cause. Good luck, and welcome to the forum! Tell the doc who dx'ed you about this forum and what we said. Maybe he or she can learn something from browsing our pages.

[drz]

The diagnosing doctor can call any expert on the VF expert list and get advice on what meds to start. The expert i see didn't see me till after i was well along in my treatment and close to remission but he consulted on my treatment along with a couple other experts on how to best treat me.

[vdub]

I believe Addenbrooke in Cambridge is the premier wegs hospital in the UK, but I don't know that for a fact. We have several people on the forum who go to Addenbrooke and seem very happy with it. One of those is Geoff (http://www.wegeners-granulomatosis.com/forum/members/geoff.html) . You can send him a PM by clicking on the link (his name) in the previous sentence. Geoff is on here frequently, so he might see your post.

[Hammy8241]

Dr Jayne (Addenbrooks) is the man. Worth getting your consultant to either refer you to him or consult with him if they are unsure about what's best for you.

[cjhnsn29]

Hi Bettie! I am also one of the ones that have a saddle nose. That's where mine started. In my experience I started having problems now with my mouth. Not everyone gets the same issues. I am just letting you know my experience. They won't even think about fixing my nose anytime soon. The Dr's told me that it may not work because they weren't sure that it would take because I am having more problems. My gums starting dying and went over my teeth which I had surgery September 2015 thought I was in the home stretch until this week my jaw bone started breaking off and coming through my gums. I had surgery yesterday and they removed the dead pieces that died and broke from my jaw. I don't have enough support to hold my jaw bone and teeth in so we have to do cheek implants to make everything better. Like I said everyone is different this is just my experience.