Newly diagnosed with wegeners

[melbourne andy]

hi folks
I have just been tentatively diagnosed with wegeners, the rheumatologist I am seeing wants to do a nasal/sinus biopsy to make certain, but he is pretty sure it will turn up positive.
it all started at the beginning of October last year with pancreatitis, this put me in hospital for a month and off work for 3 months, however there was no cause found, no gallstones or alcohol so they put it down to a virus that I may have picked up, this was quickly followed by a sinus infection then an ear infection then scleritis of the eyes, this put me back in hospital for a further 2 weeks, this was about 8 weeks ago, it was mentioned at the time that it could be an auto-immune disease, nothing more was mentioned about it, then about 3 weeks ago I had to go and see my diabetes nurse who went through my recent run of bad luck and mentioned I have vasculitis to which I replied no I don't, it turns out that the hospital ran the tests but failed to notify anyone of the results, my normal GP was not happy about this and sent me to the rheumatologist who I must say has bent over backwards to help me, he has spent the last day trying to get me in for either a CT or biopsy of the nose ASAP.
I am currently on 20mg of prednisolone a day, any less and my eyes start to play up again, the rheumatologist wants me off them because of my diabetes.
I have done nothing but read up on this disease over the last week, lots to take in.

[Swb21188]

Good Luck, I hope you get a diagnosis no matter what the result. If it is WG don't panic treatment is available and you will be able to live a relatively normal life.

[Pete]

Hi Andy,

Welcome to the forum. You'll find a lot of great folks on here to give you support and share the GPA experience. This forum is based in Australia and you'll soon make new friends with your fellow Aussie weggies. The rest of us talk a little funny, but we're here to help as well.

Hope you get a firm diagnosis soon so you can get effective treatment.

Good luck!!

[mishb]

Hi Melbourne Andy and welcome.

Is this Melbourne Australia or Melbourne Florida, or maybe the Melbourne doesn't mean anything at all.

You certainly have been having some issues lately :sad: I hope you have a good rheumatologist and ENT.

Sinus biopsies are, more often than not, negative or inconclusive, but hopefully yours shows something.
It is a relief to get an official diagnosis, even if it has to be WG. It's the not knowing part that is the worst.

It certainly is a lot to take in, so don't be afraid to ask any questions that you need to. We are not medical specialists, so you should also speak to them, but we are living through it each day and although symptoms can be totally different from one person to the next, someone may have an answer for you.

[kaysee]

Welcome Melbourne Andy,
You will find lots of support here. Some on here have a lot of experience with this disease and have good advice to offer. It took two years for my diagnosis. I had similar problems to yours - ear infections, scleritis of the eyes, unknown infection that hospitalized me, skin rash, sinus infections, etc. I was finally sent to a rheumatologist who was familiar with WG and diagnosed me. By that time I had kidney involvement. I wish you the best of luck. Once diagnosed there are some good treatments.

[annekat]

Welcome, Andy! I can offer some encouragement about nasal biopsies in that mine was conclusive for WG, even though I'm sure Michelle is right that they often aren't. There could be some factor in your individual case, like whether it's possible to get a good sample from your particular nose and sinus area. I'm guessing it would have to be precisely from an area where the disease activity is present and readable, to which a good ENT might have visual clues. If it is negative or inconclusive, a good rheumy with WG experience may be able to diagnose you based on symptoms and the hospital tests that came back indicating vasculitis. The important thing is to get treatment started ASAP.

I'm glad you are here, and if you have WG, I hope you find this forum to be as much of a lifesaver, physically, mentally, and emotionally, as I have since the day I was diagnosed 4 years ago. It is full of wonderful, caring, and helpful people, and you won't feel alone with the disease.

[Alias]

Hi Andy, you've sure been through a lot. I hope you get a conclusive diagnosis and that you're set on an effective course of treatment right away.

I want to share a thought about the possible nasal biopsy. My doctor ordered one, and I went along with it even though another doctor questioned the need for it. In retrospect, I believe (in my case) that it was unnecessary and caused needless discomfort and expense. I also think it contributed to the long term damage I have in my nasal passages by creating additional scarring. The biopsy was negative, but I was still diagnosed with WG based on the lab evidence. The lab evidence was already available and was convincing for WG before the biopsy. So... my treatment would have been the same regardless of the biopsy. Your team may have a good reason for wanting a biopsy; I would just be sure to ask about it before agreeing.

Best of luck.

[annekat]

For whatever it's worth, my nasal biopsy was quick, not very uncomfortable, not expensive, and able to be done on-the-spot, unplanned in advance, right in the chair I was already sitting in, with a local anesthetic. I don't think it caused any damage or scarring. The nasal and sinus passages are pretty complicated, so I would never suggest it should be that easy for everyone. If I understood it correctly, my ENT took scrapings from the bony part of my septum where a perforation had occurred, and a small amount of whatever tissue was nearby that looked likely to have disease activity. If he didn't have to go any farther than my septum for a sample, that could explain why it was easier for me than for some others. If you do get a biopsy, I hope it goes smoothly and is conclusive either way. You could get a second opinion as to whether the biopsy is necessary, or whether maybe the current evidence including the hospital test results might be enough. Or just tell your current rheumy what was said on here and see what he says. And I just noticed you said a CT scan OR a nasal biopsy, so he might go for the scan, if he thinks that would show enough to form a conclusion.

[Alias]

Right, my experience was completely different. My biopsy was done under general anesthesia, which ups the ante in terms of cost and risk. In my case the immediate aftermath was very unpleasant, and it turned out to make no difference in diagnosis or treatment. It's the only thing about my treatment that I wish I could go back and "undo"; overall I have gotten excellent care. Andy, I didn't mean to freak you out about the possible biopsy, but based on my experience it's something you might want to ask about.

[Pete]

I had a nasal biopsy and a bronchoscopy done back-to-back. I was in the twilight zone for the procedures. As I faded out, I told the docs that whoever got the diagnosable sample got a steak dinner. The ENT got the dinner.

I had no issues following these procedures.

[annekat]

I had a nasal biopsy and a bronchoscopy done back-to-back. I was in the twilight zone for the procedures. As I faded out, I told the docs that whoever got the diagnosable sample got a steak dinner. The ENT got the dinner.

I had no issues following these procedures. Love it, Pete! It's nice you are on those kind of terms with your docs. If they'd both gotten a diagnosable sample, you could have had a real party.

I definitely wasn't in the twilight zone, there was some pain, and blood was dripping out of my nose. No real recovery time, though. I think the ENT was pretty skilled at getting in there and doing it quickly. At the same visit, he got a needle biopsy of my parotid gland, near the ear and neck, because it had swollen into a lump and he wanted to make sure it wasn't cancerous. I've read a couple times on here of the parotid gland being involved with WG.

Andy, some of us get a lung biopsy for dx, which is said to be more reliable in results, but that is a much bigger deal and wouldn't work for you anyway if you don't have lung involvement. I had lung involvement, and am glad the nasal biopsy worked, because otherwise, they might have sent me in for a lung biopsy, which I'm sure would have required hospital admittance, and would have involved more pain and recovery time. In any case, I agree with Alaskatom that you should ask a few more questions before getting the biopsy.

[mishb]

I also had a nasal biopsy and it was positive for wegeners.

As Anne and Pete have said - the biopsy is really not too bad. I certainly didn't take my ENT out for a steak dinner :lol:

[Alias]

Anne, just as an aside, I had that parotid swelling, too. At that point, the ENT here in Alaska was still clueless and said it was a barely noticeable incidental finding, and something like "how many ENT problems can you have at once, anyway?" (That ENT was NOT the doctor who eventually figured it out!)

[annekat]

Anne, just as an aside, I had that parotid swelling, too. At that point, the ENT here in Alaska was still clueless and said it was a barely noticeable incidental finding, and something like "how many ENT problems can you have at once, anyway?" (That ENT was NOT the doctor who eventually figured it out!) That's interesting. It happened just at the same time as I noticed my saddle nose, coincidentally. I don't remember whether the ENT said the parotid biopsy could help dx the WG; I just remember cancer being his main concern there. I didn't see the pathology report. And I don't remember how long it took for the parotid swelling to go away. I started treatment about a week later and think that took care of it pretty fast. I know if you search the archives you'll find some mention of the parotid gland. As to the question of "how many ENT problems can you have at once, anyway?", my answer would be "quite a few".

[Jaha]

Hi Andy,
I wish you all the best for getting on your way to feeling better. Please keep us informed on what you find out. Take care of yourself and feel free to ask any questions, there is always someone online to answer them.:smile1:

[melbourne andy]

evening all
first of all a big thanks for the warm welcome from everyone, I am back in to see the Rheumatologist on Monday as he wants to change my meds (prednisolone) so will wait and see, I have been told that my kidneys are not affected, that was a huge relief. I am also seeing an ENT on Tuesday morning, so things are moving along quite quickly, this has all been taken care of by the Rheumatologist, I know he said he wanted things done quickly, I was not expecting it this quick, so hopefully he seems to be on top of things so far.
at the moment it is only affecting my eyes ears and sinus's, hopefully we are going to get on top of this before it goes any further, not looking forward to having my meds changed, if I drop it down by one tablet my eyes start to play up in a matter of hours, he did mention of putting me on methotrexate, how quickly does this start having an effect or would he still keep me on prednisolone, well will find out on Monday.:scared::scared:

[mishb]

Hi Andy,

Which hospital, if any, is overseeing your care?

Methotrexate (MTX) takes at least 6 to 12 weeks to kick in fully.
I wouldn't be reducing pred until the MTX or whatever other med they decide to put you on, starts working

[annekat]

Andy, usually people are on pred and an immunosuppressant at the same time for a long time, though the pred does get tapered. And you aren't even on an immunosuppressant yet. Or even diagnosed for sure? It would seem more usual to add the MTX and give it time to take effect before messing with the pred. Though I don't know how much you are on. But the rheumy should be paying attention to your symptoms and how any adjustment in pred will affect them. Best of luck.

[Alias]

Andy, I was on 60 mg of pred for two months, during which time the MTX was started and given some time to take full effect. If the fires are banked with the MTX (or whatever med is decided on) and pred, it's likely you would be put on a slow taper of the pred. I'm presently at 5 mg, about 14 months post diagnosis. The pred becomes much less annoying as you get into the lower dosages. Since it sounds like you have localized or "limited" disease, your doc may decide that the MTX and prednisone should be sufficient to induce remission. It's a very good sign that your doc recognizes the need to move quickly, so it sounds like you are in good hands.

[melbourne andy]

Evening again,
I am currently on 20mg of pred a day, the rheumatologist does not want to up the dose because of my diabetes, at the present moment he is approx 90% sure on it being wegener's, he did say that he did not want to put me on immune suppressants until he was 100% certain.
so i can only assume that something in my last blood tests has changed his mind.
michelle i am currently under frankston hospital, this is were i was with the pancreatitis, which they think was caused by the wegener's.
I will have more of an update on tuesday.

[marta]

hi folks
I have just been tentatively diagnosed with wegeners, the rheumatologist I am seeing wants to do a nasal/sinus biopsy to make certain, but he is pretty sure it will turn up positive.
it all started at the beginning of October last year with pancreatitis, this put me in hospital for a month and off work for 3 months, however there was no cause found, no gallstones or alcohol so they put it down to a virus that I may have picked up, this was quickly followed by a sinus infection then an ear infection then scleritis of the eyes, this put me back in hospital for a further 2 weeks, this was about 8 weeks ago, it was mentioned at the time that it could be an auto-immune disease, nothing more was mentioned about it, then about 3 weeks ago I had to go and see my diabetes nurse who went through my recent run of bad luck and mentioned I have vasculitis to which I replied no I don't, it turns out that the hospital ran the tests but failed to notify anyone of the results, my normal GP was not happy about this and sent me to the rheumatologist who I must say has bent over backwards to help me, he has spent the last day trying to get me in for either a CT or biopsy of the nose ASAP.
I am currently on 20mg of prednisolone a day, any less and my eyes start to play up again, the rheumatologist wants me off them because of my diabetes.
I have done nothing but read up on this disease over the last week, lots to take in.

Welcome to the forum Andy,

Sorry for the run of bad luck, but it seems like it's about to change and you can get on the road towards 'normal'.

I am not a doctor, so take everything I say with a grain of salt, but here's my two cents. The symptoms you describe sure are in line with WG. Also keep in mind that nasal biopsies can give a false negative because the biopsy has to actually snag a granuloma for it to come up positive... and unless you're littered with them, it could give a false negative.

Also, prednisone is part of the only treatment in history that can actually halt the disease progress. You need the chemo PLUS the steroids for the desired effect. Before this treatment protocol, more than 80% of patients perished, so the rheumatologist needs to consult with other Vasculitis specialists to ensure that he's not taking away a treatment that might be the one keeping you alive in the next little while. Make sure your rheumy has some experience. I was told this at the start of my WG ride, and remember being upset about it because people didn't understand my geographical limitations to getting a doc with experience, but as it turned out I did need to do that because the rheumy I was under almost killed me with his inexperience. I now have a fantastic rheumy who is actually a Vasculitis specialist, so I trust her completely.

It's hard stuff to do at the onset, but might be what makes your healing process shorter and less painful if you nip a few things in the bud right at the onset.

Best best best of luck Andy,

marta

[mishb]

Hi Andy,

I'm not sure on the Frankston hospital. I wonder if you can get to Monash as they have now created a specialised Vasculitis clinic.

If you are on facebook, we also have a WG/GPA Group for Aussies and Kiwis. You can check us out on the link below.
We have a couple of members from down Frankston and the Peninsula way.

I hope you have had a better weekend

https://www.facebook.com/groups/516643745050360/

[melbourne andy]

evening all
well the rheumatologist has put me on methotrexate, start on 10mg a week then if no side effects for two weeks up to 20mg a week, he said hopefully in approx. 3 months he can start weaning me off the pred, I have to have blood tests every 4-6 weeks just to make sure my liver is doing ok and to keep an eye on things.
also went to see the ENT specialist today they will be doing the sinus biopsy in the next 2 weeks, he said it will be an overnight stay in hospital, so at least I get a break :unsure:.
I did ask the rheumatologist would it change his diagnosis if the biopsy came back negative and he said no, he said it is just the icing on the cake so to speak.
so things are moving along quite nicely at the moment, I still have the odd bit of pain and discomfort in my eyes but it is manageable with pain killers instaed of upping the dose on the pred.
hopefully I will start to see the benefits of the meds over the next couple of months and start to feel better/normal what ever that is :thumbsup:, trying to stay positive through all this as it is a lot to take in and not knowing what the future holds, but hey ho life goes on.

[annekat]

I'm glad things are moving along, Andy. I'm sorry your sinus biopsy has to be a bigger deal than mine was. I hope the results will provide some resolution, if you do have WG, which it sounds like you do. Your case sounds so much like mine, with the sinus and ear stuff, and eye discomfort, but you are getting a much bigger jump on things, since my dx was so delayed due to no one getting a clue it could be WG. It took the disease going into my lungs in a pretty scary way for them to finally figure it out and treat me properly. Since you haven't mentioned lung involvement, perhaps you can avoid that altogether! From your reading and research you probably know that the kidneys are another major area of concern, and that you'll be regularly monitored for that through your blood tests. Quite a few of us have been lucky enough not to have that so far, but we must remain vigilant throughout our lives. Best of luck in your recovery!

[Alias]

good that you are getting started with the MTX. I think that titration is pretty standard; I believe I started with 10 mg injectable per week and after a while was up to 25 mg (or 1 ml). It's been very effective for me and many others. I hope you find any side effects minor and tolerable and that you get a good start on remission very soon.

[Rini]

good that you are getting started with the MTX. I think that titration is pretty standard; I believe I started with 10 mg injectable per week and after a while was up to 25 mg (or 1 ml). It's been very effective for me and many others. I hope you find any side effects minor and tolerable and that you get a good start on remission very soon.

really? I had pills i took every Friday.....knocked me down for a bit but i usually recovered with a nap. I am a fan of MTX in general I had very minor side effects. I know it tends to lead to body hair loss, and lushes eye lashes ;). I know a weggie dancer who ended up needing a wig but it all came back thicker and curly after.

[Alias]

Hair thinning or hair loss can occur. Folic acid, which is often prescribed along with MTX, can counter that. After things stabilized for me the hair thinning seemed to stop, but it still grows much more slowly than it used to. Definitely saving money on haircuts.

[jakekell]

Hi Andy,

I have had wegs dx about 8 years ago, but docs think I have had it much longer. I was dx with the nasal biopsy also, mine was like Anne's. I have just been told I have pancreatitis. I am waiting on the last test, which was an ultrasound to see if maybe I have a stone. I am wondering if it the wegs and if so how they will treat it. I am having trouble with my blood pressure shooting up and going to low. I am wondering if you had that issue with your pancreatitis?

This is a wonderful site with lots of helpful people. The moral support is needed along with learning from others life with wegs. I hope things are going better now. I am also on MTX and pred. overall doing well now until this pancreatitis started in.

[melbourne andy]

Morning Jake Kell
Unfortunately it depends on how bad the pancreatitis is, I had blood pressure and heart rate problems, everything was too high, the pain was excruciating, the only thing that gave any relief was the morphine direct to the stomach.
It can also cause lung problems as well, it is not something to be taken lightly, I would not wish it on my worst enemy.
I am just starting to get over mine, it has took nearly 12 months, but they do think mine was the first symptom of my wegeners disease.
I hope you get better quickly and it is only a mild case.

[jakekell]

Morning Jake Kell
Unfortunately it depends on how bad the pancreatitis is, I had blood pressure and heart rate problems, everything was too high, the pain was excruciating, the only thing that gave any relief was the morphine direct to the stomach.
It can also cause lung problems as well, it is not something to be taken lightly, I would not wish it on my worst enemy.
I am just starting to get over mine, it has took nearly 12 months, but they do think mine was the first symptom of my wegeners disease.
I hope you get better quickly and it is only a mild case.

Thanks much Andy sounds like you have been through a lot, mine only has been about 8 weeks. I just got an e-mail on my last test, which are all coming back in the normal range. I am feeling better, now if I can get the blood pressure under control. I wish you the best and keep us in the loop as to how your doing.

Thanks Mary

[melbourne andy]

jakekell
glad you are getting/feeling better, it is not a nice thing to have, I had it for 4 weeks but it was quite serious it even got to the point of them seriously considering surgery to remove my pancreas and gall bladder, thankfully that never happened and thing started to settle down.
the after effects took a lot longer, I have only been off creon tablets for about 8 weeks and still have to be careful what I eat.
good luck moving forward and all the best for the future.

andy