After Hemoptysis for 2.5 years I finally got my diagnoses ....

Hi

I am new and glad I found this website.
So far I had not been able to find anything else except for medical websites.
Well how to start.
After a massive paralyzing arthritis flare that had shut down my entire body in 2003 over night. It took many visits to different doctors to come to the diagnoses that I was suffering from SLE /Lupus.
about 10 years later with lots of ups and downs I started having lung problems.
Besides the symptoms I now know are indications for Wegener's Granulomatosis (Ear infection with crusting and liquid absorption, eye infection, permanent nose bleeds, skin rush / eczema , arthritis which I still don't know if it is more Lupus or Wegener's related ...or maybe I do not even have Lupus.)
First trouble breathing and mucus build up and always coughing and the permanent need to clear my throat especially at night I started having hemoptysis episodes which got so bad that I ended up in emergency.
The procedure was ..
5 doctors standing in an Isolation room in their hazmat suites and were trying to find our what it could be that triggered my massive lung bleeding.
I was x-rayed, had CT, had bronchoscopy, and a needle biopsy which priced one of my endless new-build spider-web blood vessels to feed my nodules that had build up in my lungs.
Later on I had an embolization to get to stop the lung bleeding which was even more massive since they "stabbed me open".
The doctor who did the embolization wrote a report after telling her colleagues NEVER to do a needle biopsy on me again since this would be way to dangerous with this massive network of wildly build blood vessels, which was added to my medical history on file.
I was released from my hospital stay and the bleedings kept being only little blood clumps in my brought up mucus for about 1.5 months.
And from then on I started having bleedings (about 2 to 3 table spoons ) again about every month at least once sometimes twice.
The first few times I still went to emergency but I learned that they did not know what to do with me because the biopsy was inconclusive and another biopsy was out of the question.

There was no bacteria, no fungus, nor viruses they could find in the cultures they had set.

Although I told them right from the start that I highly suspected that all of this was caused by my wacky immune system and might be SLE related.
Nobody else wanted to go that route.
2 years fast forward and I was still bleeding regularly and it really had gotten to me. At times I was so down, with all the ear,eyes and nose trouble and the bleeding ...always the bleeding.....

I went to my family doctor and asked him to send me to a special Lupus clinic , I could not live like that anymore.
Said and done and I had seen the rheumatologist as well as the respirologist . They also did not really think it had to do with Lupus but wanted me to take a slat water induced cough / sputum test.
I got an appointment but 2 weeks before I had another huge hemoptysis attack. Went to the former hospital at emergency and was introduced to the RIGHT person (my now Respirologist ) who asked me : " Did anybody before investigate your case for vasculitis ?"
NO
He was basically sure that it was vasculitis or Wegener's disease.
I had another bronchoscopy, after that I agreed to an open lung biopsy (which was horribly painful and I am really not a wimp) and the result was Wegener's.
This was in November 2016 and after 3 weeks at the hospital they started me on Cyclophosphamide IV and 60mg prednisone and sent me home.
I am home now and had my third chemo-treatment last Friday.
Since my first IV on cyclophosphamide I have not bled one drop from my lungs and also no trouble with my eyes, ear and only after the last reduction of Prednisone from 50 to 40 I started having nosebleeds again.

I am glad to be here now.... here at this stage where I finally feel like I know what I am up against and here on your website with all of you who fight the same battle .

Thanks for reading and I hope I will learn from your experience and wisdom.
I have a lot of questions since I am very much into naturopathic treatments and believe in nurturing ones body but am scared to chose herbs for example which increase my immune system which we now try to suppress to survive.
Like Inonotus Obliquus/Chaga, Glutathione and others.
Any suggestions are welcome.

Thanks
Val

Sorry you had such a horrible ordeal but many doctors seem ignorant about Wegs so we often suffer for a few years before we finally get a correct diagnosis. It is unfortunate cause much damage and death can even result from a delay in getting correct treatment but things generally get better once we get correct treatment so hope your recovery is quick as possible.

I would also forget the alternative meds and treatments now as some have almost died trying those instead of regular treatment. Once you are in remission then things that enhance your health might be added. A good diet and healthy life style will help you too but you must get the Wegs under control first and the prescribed meds seem only way to do so today.

Hi Val, glad/sorry you're here. Hope you get the help and support you need.

I am sorry to have to welcome to the fold Val, but this is an amazing group of diverse, knowledgeable people.

Ask away (24/7) if you have questions or want to vent, or want to share celebrations, etc. We all are with you and GET IT.

I hope you are on your way to a better time now. Each day will be your journey to your new normal.

Welcome, Val. Wow. What a journey, Bleeding for 2 years, its a miracle that you have survived. I thought they should know to diagnose wg in Canada...

You can ask anything you want.

I dont trust the alternative meds/ herbs etc.. I would be highly suspicious as they can not only not help but also can cause damages.
You are getting the right treatment right now.

Val,
Wow it is a wonder that you made it, bleeding from your lungs so long. Welcome to the best group of people ever. I am wishing you all the best with your treatments, I hope you feel better soon.