It is good to know...

[blm]

Just diagnosed with Wegener's in August. Had my 3rd infusion treatment this week. I've always been one of those who pushes through illness...keeps going...and then suddenly I couldn't anymore. I'm a social worker. I was fatigued, depressed, feeling like I wanted to quit. Then the heat came and my body just started burning up, pain from the top of my head to the soles of my feet. My pets (2 dogs, and 2 cats) were visibly concerned about me. As I reclined on my couch they covered me. I felt almost like they were trying to take the sick away.

The drop-in clinic prescribed antibiotics for a sinus and ear infection.
The ENT the clinic referred me to gave me a big steroid shot.
I kept saying I couldn't swallow. I couldn't eat. No one seemed concerned.
I kept trying to work at my job.
Finally my tongue swelled on one side and my speech was slurred. I texted my ENT. She said get to the ER.
They thought my chiropractor had "pinched a nerve".
They did a cat scan. They were about to release me from the ER when a radiologist said they found something in my lungs.
Then they gave me the cancer speech and said they were admitting me, put an IV in my arm and took me off to a room with the promise of a biopsy.
When I got to the room the hospitalist gave me another cancer speech and said I'd have a biopsy the next day.
The next day another hospitalist put on a mask and said it could be TB, but my biopsy had been delayed another day.
Thanks for scaring me. Thanks for being so sensitive to my feelings you grab a mask to protect yourself.
My daughter and I did not believe it was cancer or TB. Never a smoker. No asbestos exposure. No family history. No travel abroad.
And it wasn't.
Eight days later. Two in intensive care with round-the-clock nurses. Finally it was Wegener's.

Thanks to my Pulmonary Doc for testing for Wegener's.
Thanks to my Rheumatologist for setting me up with treatments.
Thanks to my employer who is so far very understanding.

It is good to know...to give it a name.

Feeling so much more like myself than I did just 4 weeks ago. I'm looking forward to getting back work in a few weeks after the infusion is finished.

It is good to know there are others fighting this fight. It's a new way to live for sure. But it's a way to live. And for that I'm grateful.

[Gab122]

Hi blm,

Welcome to this family and forum! I was just diagnosed Aug 1 myself - around the same time as you. I'm sorry you got so much misdiagnosis about cancer and tb! That must have been awful! I'm feeling much better too than i was 5 weeks ago! Are you on prednisone too? Or just getting the ritux infusions?
I'm glad you found us and like you I'm so grateful to know what I'm fighting and that there are meds to fight it with!

Wishing you improvement every day!

Gabrielle

[blm]

Thanks!

Yes I am on Prednisone. 60 mg now, 50 next week, then down by 10 each week till I get to 20. However, my first real visit with my rheumatologist today may change that. He seems to disagree with my pulmonary specialist and wants to move faster to avoid long term effects from the steroids.

Same to you Gabrielle.

Becky

[Gab122]

Since 8/1/16 i'm on pred 60 mg too Becky. 3rd rhuem appt is tomorrow. Hoping we will start taper. I heard it should be done really slowly. I imagined that was slower than one week. Maybe others will chime in their experience w/ tapering. How did your RA meeting go?
Gab

[Alysia]

Welcome to the family Becky and thanks for sharing your story. Thanks God they have found the right diagnosis. And thanks God for our pets (4 cats at home here ) The cancer dx was also in the air in my onset.

Gab, tapering down pred is individual. The slower the better. There are many variations. Also depends on how long you were at a certain doze. I would suggest tapering of 5 mg for week or two, always listening to the body to make sure its not too fast.

Becky, docs want us off pred faster then we can, too many times. Listen to your body. If the pred reduction is too fast, you might have some wg symptoms back, or headaches.

I must say that this is me, married forever to my dear 5mg pred. Maybe others are more courageous and easier with saying goodbye to their pred.

[Middlesista]

HI Becky - Glad you found the forums but sorry that you are here. I also had the TB and cancer potential diagnosis until they ran the ANCA and it was positive. Was diagnosed in Novemenber of last year. Had Rituxin infusions and prednisone and now also on MTX trying to get off Prednisone. Like Alyssa said - everyone is different in how they tolerate a taper. I want off the stuff as soon as possible - the long term complications are very problematic I think. I am down to 7.5mg after a few ups and downs. I feel that the doc that increased the prednisone was premature since I later learned that my Rituxin was still active. So we are tapering again and I am so hoping for a more positive response this time.

make sure they monitor your labs and keep an eye on your symptoms.

take care of you and ask any questions - as Gab mentioned, it usually does get better with treatment and time.

[annekat]

Since 8/1/16 i'm on pred 60 mg too Becky. 3rd rhuem appt is tomorrow. Hoping we will start taper. I heard it should be done really slowly. I imagined that was slower than one week. Maybe others will chime in their experience w/ tapering. How did your RA meeting go?
Gab

Welcome to the forum, Becky. You have found the right place to be if you have to have WG. Especially with such short visits with specialists, you will get more info here than anywhere, and lots of friendship and support.

One thing to keep in mind about tapering pred: think of it in terms of percentages of drop in dose. If you are at 50mg., a drop to 40mg. is a 20% drop. Although that is significant, it becomes more extreme as you get into the lower doses, e.g. a drop from 20 to 10mg. is a 50% drop. By that time, you may have been on high dose pred (20mg. or more) for long enough, say two months or more, that your adrenals have shut down and that kind of a drop could be disastrous to your well-being. So yes, it is important to go slow, but you can go a little faster at the higher doses and lessen the chances of long term high-dose damage to your adrenals. I still say be conservative at the higher doses, too, though, when you are sicker and need to be watched very carefully. I would favor a drop from 60 to 50 over a drop from 60 to 40, and it might only have to be for a couple of weeks before going to 40. (I'm largely paraphrasing what I think I've read from a very smart member who used to be on here a lot, so anyone can correct me if I'm a little off.)

[blm]

Thanks Anne -

You are right. I'm getting lots more info here and some really great advice from folks who know. I started tapering this week, going from 60mg to 50mg. Next week I'm supposed to go from 50mg to 40mg and so on until I get to 20mg. I'll keep a close eye on what my body is telling me and be sure to share that info with my healthcare team. At this time I'm not sure who to tell first, but I'll figure that out too.

Thanks for the encouragement!

Becky

[blm]

I appreciate everyone's input on this. It's hard to know who to listen to when so many different specialists are involved in your care. Especially when you only get 3 - 5 minutes with your specialist. Overall the message I get from you all is to be an active member of your care team. My generation was pretty much taught to do as they were told and I sometimes forget that I have a voice.

Thanks for reminding me.

Thoughts and prayers to all of you.

Becky

[Alysia]

Listen to your body and learn how to be your own best dr.