Newly Diagnosed

[Geraldine 1]

Hi everyone, I am very glad to have found you guys. I was just diagnosed Dec 2009 with WG. I got sick in Oct 2009 and they told me i had lung cancer, then TB which i was treated for nearly 6 weeks and continued to get worse. This after they performed the lung biopsy. I am on 60mg of Prednisone and they kept me on Isonaid also as a preventive for TB. Some days I am ok but the past few have been bad my upper body is in alot of aches and pains. I said it to my dr. and he said it is arthritis. I live in the New York area but originally come from Ireland thats why they were convinced it was TB. Does it usually take a long time to recover from the biopsy??? Looking forward to chatting with everyone. Thanks.

[Jack]

Hi Geraldine and welcome to the forum. There is a huge amount of experience here with Wegener's and no subject is out of bounds so ask away. You are in the very early days at the moment and probably have not yet come to a full understanding of the disease's nature. It is different with each individual!

I think the drug you are taking for TB is Isoniazid. I know nothing about it other than looking it up on Google, but it seems to be a very powerful drug with potentially very nasty side effects. If you do not have TB, you should not be taking it because your body will have plenty to cope with having Wegener's.

Secondly, you mention taking 60mg of pred, but no mention of any chemotherapy drugs such as cyclophosphamide or azathoiprine. Prednisolone on its own will not control Wegener's and you must take it in combination with something else. Post a list of all your medication.

I have had biopsies taken from lungs, kidneys, sinuses, skin etc. and none took any significant time to recover from. If you are having trouble, it needs checking out. It could be due to the Wegener's not being in control. What symptoms did you have before diagnosis and what symptoms now? We'll try not to attempt diagnosis via internet, but will try to point you in the right direction.

[Geraldine 1]

Hi Jack, along with the pred i am taking sulfatrim, pantoprazole, isoniazid, calcium and B-6. I tested positive for TB, being from Ireland we get BCG shot and they want me to take isoniazid as a preventive. My symptoms before were the persistent cough, runny nose. loss of weight and finally bad pain in my back where i couldn't breathe. Thats what brought me to the ER. Now I have aches and pains on left side of my back since biopsy. I am going to see the thoracic surgeon Thursday to get this checked out. I am not sure why I am not on chemo drug.

[Jack]

Your other medication sounds fine, but Wegener's does require the combination of steroids and immuno-suppressant drugs to control it (unless it is already practically in remission). Before this regime was developed, the outcome for most patients was not very good so it is something you must question. Permanent damage can be done quickly and without warning if the disease is left uncontrolled.

Wegener's is such a rare disease that most doctors do not have any understanding of the complexities involved in treating it. I'm sure you will soon be bombarded with posts on this site about finding yourself a specialist in vasculitis. That, and doing your own homework are essential to help you manage the condition. Someone who deals with Wegener's patients every day is the only type of specialist qualified to treat you and we have had some unfortunate outcomes from people who have received inappropriate treatment.

[Geraldine 1]

Thanks Jack, the doc said he will be putting me on Imuran as soon as he reduces the pred. Does that sound about right?

[Jack]

Imuran is one of the less powerful immuno-suppressant drugs and is usually used after something like cyclophosphamide has been used to kill most of the symptoms. However, it is sometimes used as a first choice in less severe cases. Why you are not taking it now, I have no idea. It is not the usual pattern of treatment so unless he is a specialist, I would be asking questions.

[Terri]

I glad you have found us here. Like Jack said, you will be asked lots of questions, but please don't feel too over whelmed. There are many experienced people on this site and I for one wouldn't know where I would be with out them. The support is great and we have fun too. It takes some of the edge off the disease itself.
Don't be afraid or embarrassed to ask anything. "Knowledge is power" as I have recently learned and I've even recently earned my "nagging rights".(Thanks Doug) Please let us know how you are doing.

[Barbara1966]

Geraldine
I also was misdiagnosed with TB because I was vaccinated in Poland as a child, and have the bacteria. My old pulmonary proscribed the antibiotics right and left. It wasn’t until I finally switched to a new doctor he was able to realize, soon after reviewing my CT-scans, that I did not have TB and stopped all the antibiotics.
Also will help if you have old chest X-ray to compare.
For me the first day after the lung biopsy was the worst, I was send home on third day, after that you just need take a easy.

[Sangye]

Geraldine, welcome to the group!

I agree with Jack that it seems very odd for you not to be on a major immunosuppressant. If your pre-diagnosis symptoms included weight loss and bad back pain, that suggests quite active disease. Waiting to add an immunosuppressant is unusual. The most common one-- cytoxan-- takes a month to fully kick in. Imuran is not strong enough to quiet active disease. A Weggie is usually transitioned onto a drug like imuran once the disease is well under control.

Arthritis doesn't occur overnight, or even within a month or two. If you're having significant pain, it's much more likely to be Wegener's. It can cause lung pain and/or generalized joint pain/ stiffness. The joint pain and stiffness can be severe. I'm one of the big naggers about getting to a Wegs specialist. We can help you find one if you like.

[MCC]

Hi Geraldine, I've just been diagnosed also this January. I was also told various diagnosises such as TB, kidney cancer, abcess.
I'm also on the drug for TB as I tested positive for it (ie. I've had it at some point) and apparently even if dormant the steroids can cause TB to flare up. What test did you have for TB? I had 'Quantrifiron gold' as I too have had a BCG and that can give a false positive for TB, but the quantrifiron is accurate.

I'm still learning about Wegener's, but from what I've seen you must have prednisone combined with cyclophosamide or a similar drug (I am in a trial comparing two drugs so there are others potential medications) to get well.

I was fine within 2 days of the kidney biopsies, so I would ask your doctor about pain urgently.