Newbie to site. Brother in law with Wegeners.

[kimberley]

G'day all,

I have just stumbled upon this forum. I am from Sydney, Australia. and i have no idea how to start a new post or if i posted to the correct post.. very new with these types of forums

I don't suffer from Wegener's but my brother-in-law does and has been fighting this for almost 3 years now. This is the second time he is fighting this disease. The first time he had this disease i think he was 14 and when he had this disease then it affected all his joints and he had nose bleeds, he is now 36 and this time it has affected his sinuses and lungs. i have been talking to my sister (it is her hubby that is sick). the reason i am on here is because i am very curious to find out from other sufferers what side effects from all the drugs and everything that you have been told to take. my brother in law's (BIL) anchor was 6-8 for 3-4 months and now it has gone back up to 14. i'm not sure if we use the same terms as you guys but i am just curius. My BIL has had one of his lungs half collapsed and has been advised he has extreme emphysyma but has never smoked in his life (neither does my sister). he had to have a emergency trachiotomy done (thankfully that has since been removed) he is having dialatation done every month to help with his breathing, and his nose cavity disintegrated (i think that is the word).

I hope this is not the wrong thing to write. i am just trying to get my head around what is actually happening to him as it breaks my heart to see him like this. especially as he used to be a big runner and never smoked. at the moment i feel his overall mentality is stronger then his body, and it worries me as that can only last for so long. he has 3 young kids. 7, 5 and 3.(he got sick not long after his son was born.)

thanks for listening.

Smile, and let the world wonder why! - Minnie Mouse

[Debbie C]

Hi Kimberly,sorry to hear about your bil but you are definately in the right place to get some help and information. There are serveral Aussies on here and I am SURE you will become very close to them. There is also a facebook page that I know Michelle will tell you about. The MOST important thing is that he has a dr. that has knowledge of wg and treats him with the right drugs. It does take time but he will come around to a "new" normal.He should be able to do most of what he did before but there are days that you just don't have the strength to do all you want.Feel free to ask anything at anytime since someone is usually here 24/7.

[vdub]

it worries me as that can only last for so long

Don't believe most of what you read on the internet. A lot of the studies are outdated. From what you have written, it seems his case is worse than most, but they have very good treatment with new drugs now. I know Australia is very much on top of wegs. Many of the newer and better studies come from Australian research.

You have cause for concern as its a very serious disease, but I wouldn't be overly worried at this point. Is he out of hospital now or still in?

Oh, BTW, the "anchor" you talk about is probably "ANCA". Its a common test for wegs.
C-ANCA - Wikipedia, the free encyclopedia

As for the drugs and side effects.... He will most likely be on a steroid, probably prednisone, but there are others they could put him on, too. All of the steroids can cause some annoying side effects. My experience is that the most common side effects from pred is weight gain, aggitation, insomnia, anxiety, and insatiable appetite. Others on the forum may have different experiences, but, generally, the ones I mentioned seem to be the most common.
Prednisone Side Effects in Detail - Drugs.com

The other drug he may be on will be an immuno suppressant. Methotrexate (mtx) is the old standby. MTX is a chemo drug and in strong doses causes the typical hair loss, nausea, etc. When used as an immuno suppressant, the dosage is usually not enough to cause really terrible side effects. I was on 25mg one day each week. He may feel uncomfortable, but will still be able to function. However, some people can tolerate more with out serious side effects. Others can't tolerate even 20mg. Everyone is different. MTX isn't the only immuno supressant, tho. Many exist and are being used for wegs. Rituxan is one that comes to mind.

I can't say for the lung issues what they might prescribe, but I'm sure he'll have more than just the typical wegs regimen.

[Swb21188]

First thing the Dr's will do is deal with any life threatening damage, then get the WG under control there are a number of options. In Australia we call Rituxan is called Rituxmib. Most people will be put on Prednisone along with another immune suppressant then once everything is under control he may be prescribed a maintenance drug like Methotrexate or Azathiroprine. What hospital is he at. I am told the ENT at Westmead is one of the best ENT for dealing with Stenosis in Australia. I'm a bit puzzled why he would need a dilatation monthly. He must have been flaring (relapsing) for sometime. WG does eat away at Nose cartilage, many of us could put most cocaine sniffers to shame.

[mishb]

Hi Kimberley and welcome.
Thankyou for being here for your brother in law.

If you are on facebook, we have a group for Australians and New Zealanders that you may be interested in becoming a member of.
The link is below.

I would love to hear more of your BIL's journey and hopefully he can jump on and let us know how he is going.

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