Just diagnosed....This started out a short story...what happened.

[Sean48]

Hi...I was diagnosed last week with WG. I had all the signs for over a year but like so many of you had excuses for them all. The hacking cough was the longest but I had been having cts during that time for a nodule on my lung. I had a bad cough in March that I had meds for but it never really cleared up. In June it got worse and my breathing was pretty bad. I went to the doctor and he gave me meds for an upper respiratory infection. After 3 days nothing was working so back to the doctor i went. I had just had a ct a few weeks before, but this time both my lungs were full masses......They admitted me for TB testing but I didn't have it. They sent me home with oxygen but I wasn't home for long. I went to emerg with a BP of 66/44 and so it began. I have had RA since 1978 so am very used to pred. I have few flareups. I had been on a daily dose of 6 mg for a long time and at least 2 for as long as I remember. I have had asthma all my life so am used to shortness of breath. My RA doctor was shocked when she saw the xray and wanted a lung biopsy, but the surgeon said it was too risky, but after many meetings they settled on doing one on my left lung. My right one was not negotional, as it was pretty bad. I had had a bronoscopy in June but it didnt show anything either. So they did the lung and they found the WG. If it wasnt for my 3 teams of doctors, they probably would have just treated me for RA. I don't remember any of this time reallly. Thank God for my family as they were there to take care of me and stay on top of everything. I have been recooperating at my sisters for a week. I feel tired and weak after a shower or doing a small chore but other than that I have no signs of any symptons I had before. I have had 3 days of liquid pred and now on 60mg. Today I go to my RA doctor who is also a WG doctor. (I need to verify that) She is wonderful and I have no doubt in my mind that if it wasnt for her I may not be here today.
She is putting me on cytoxin. I will be going for xrays and and blood work, so will find out when that will start and the dose ect. So I guess I have said enough. I talk alot, even when I am not sick. ha ha. They call me the babbler. Thanks for listening.
My last thought is this. So many of you are so tired and weak. Will I be like this all the time? Or will I go back to work this way. I know everyone is different but the most I read is the weakness and tiredness. I gather its the meds, or is it the WG? Take care all of you and thanks for this great site.
Sharon

[JanW]

Hi, Sharon, and welcome. Sorry you had to find us.

I think you will find many variations among WG patients here. Once I got my subglottic stenosis fixed via surgery, any fatigue that I had simply went away. It was all a function of struggling for breath. I feel much the same as I did before diagnosis (January 2010), actually better systemically, although I suffer from swelling in the soft tissue of my ankle which makes mobility difficult and is a general drag. It's been going on more than six months now, and is actually what led to my diagnosis (it wasn't getting better, and I couldn't pinpoint how I injured the ankle so blood work was ordered) so I should be thankful for that.

I am on 15 mg of mtx (which worked to remove all the inflammation although my c-ANCA is still positive and I still have high P3) and no pred. I have one nodule in my lung that is very small. My main problem is the SS (for which I will need a few surgeries) and a saddle nose which is an aesthetic problem (ok, a big aesthetic problem) but not a functional one (my breathing and sinuses are fine).

[Sangye]

Hi Sharon, welcome to the group. (Before I forget-- it helps that you sign with "Sharon" since when I see "Sean" I'm going to think you're a guy. Lots of new members lately and it takes awhile to get everyone's gender correct with screen names. )

Even though both Wegs and RA are autoimmune diseases, Wegs is a whole different game. Almost no one knows about it and docs who have only treated a few cases are in WAY over their heads. Wegs follows no rules and does silent, sneaky damage. RA is not always clear-cut either, but it can be managed by the majority of rheumys quite well and it does have classic signs/symptoms.

The most important thing is to get a Wegs specialist right away. That's a rheumy who sees hundreds of Weggies and does Wegs research. There are very few in the world.

Here are the different ways to make this happen:

1) Best Scenario-- Establish yourself as a patient at a major Vasculitis Center
The Wegs doc is your own doc and s/he oversees all your care. You have direct contact with them. Many people travel to a center a few times a year for ongoing care and have their local docs and facilities follow instructions accordingly. It works great. Major centers in the US: Johns Hopkins (Baltimore), Cleveland Clinic, Boston University, Mayo (Rochester).

2) Next Best-- Have your local doc consult with a VF doc on an ongoing basis
The VF docs offer this for free. Your doc has to initiate it. You have no direct contact with the Wegs doc, no way to ask questions. You're subject to your local doc's interpretation of the advice, his/her ego, wilingness to call and ask for help, etc.... Works fine for some people, but under the best circumstances you're still missing out.

3) Just Don't Do It-- Have only your local doc(s) on your team
This is the worst. Many newly dx'ed members are so pleased that their local doc finally dx'ed them and maybe even saved their life, that they think it'll be okay. Even if you're at a famous hospital, they don't have the skill to handle Wegs.

[elephant]

Hi Sharon, welcome....I was diagnosed with RA when I was 12 years old I am now 45! I was diagnosed two years ago (WG). Now the Rheumatologist think that I had WG since I was 12...i had other symptoms but the rhuemy back then did not put all the pieces together ( pink eye, bronchitis ( mulitple times), kidney failure, mulitple swollen joints).