New and Scared

[Christrd]

I never had a ctx IV. It was all oral meds. They had me at 150mg at first. Then 4 months later they had me at 170mg. Now im at Zero. My arms and ackles feel stressed out, like if I worked out for hours.

[JanW]

Immediate call to your rheumy is in order Christrd. It's still early in CA...get on the phone, don't wait.

[elephant]

Chris call now just like Jan said or go to the Emergency room. You are having a big Wegeners flare. Don't mean to scare you, this happened too me and I waited too long.

[Col 23]

Just a question after reading Christrd about the joint pain. This week I have been in crippling pain with back and legs aches swelling knees, ankles and unable to do bare basics for about 3 days, teary and tired. Alos bruising on upper back. Then woke up on Friday Morning like someone had just cured me. "very little pain". If your having a relapse is that at sign? Like Christrd I have a goal to achieve this year. (Flying to Darwin to help with delivery of daughters baby on Thursday). Also are support stockings a good idea or preventative?

Hope this finds you all feeling well today.

cheers Col 23

[Sangye]

Col, that type of pain is common with Wegs. Symptoms can rage up like a fire and die down just as quickly. The severity of the symptoms is the clue that it's active Wegs. Don't be fooled by the fact that it seemed to fix itself. If it were isolated to a single joint it might not be a big deal. But widespread pain means widespread inflammation.

When my lungs were hemorrhaging last summer, I coughed up a lot of blood for a few days then it seemed to dry up on its own. The pulmy in the hospital said it couldn't be Wegs-- that Wegs hemorrhaging would progress. My Wegs doc was very upset when he heard that.

[Col 23]

Thanks for your reply Sangye. Having bloods again Monday and seeing Rhemy on a Wednesday who will probably arrange a few more tests and xrays. Wegener's appears to be so complicated and tricky being multisystemic and you dont know from one day to the next how your going to be feeling. Sangye the lung hemorrhaging sounds serious can you tell me abit more about that as that is one of my primary spots that WG seems to attack.
Hope this email finds you feeling well today.
cheers Col 23

[Sangye]

I'm glad to hear you've got dr appts coming up this week, Col.

It seems that Wegs likes to play 2 different games with the lungs-- alveolar hemorrhage or nodules/granulomas. Because it's so darn talented, Wegs can play both at once, but most people tend to have a predominance of one or the other.

I have the alveolar hemorrhage type. That was what my lungs did originally, and it's still they're favorite game. They were hemorrhaging for 3 months pre-diagnosis. My only lung symptoms were minor dry cough, occasional specks (~3 mm streak) of blood with coughing, profound/ rapidly progressing anemia and extreme shortness of breath. My lungs sounded perfectly clear and my pulse oxygen saturation was 100% (at high altitude, no less!). Nevertheless, the first CT showed my lungs were completely filled with blood, top to bottom. Blood had been pooling in them for 3 months.

I didn't have any nodules/granulomas until about a year ago, when 1-3 very small ones began to show up on my CTs. That happened while I was having increasing Wegs activity but it wasn't obvious that it was Wegs. We thought I had pneumonia for several months. I finally started coughing up LOTS of blood, indicating alveolar hemorrhage.

Alveolar hemorrhage is more life-threatening and is the harder type to treat. It doesn't respond to mtx or imuran, and Cellcept is not strong enough to stop it. The only 2 drug choices are ctx and rtx.

[Col 23]

Thank for the info Sangye- Doesnt sound like you have had much luck with the nasty Weggies. How are you responding with the drugs at the moment?
I think I will just expect the unexpected with this tricky weggies and then I wont get any surprises.
Mine was the nodules on the lungs, and they have responded so far with the mtx and the 80mg of Pred.

Cheers Col 23

[Sangye]

On the one hand it's true that I haven't been lucky, but on the other hand I've been incredibly lucky. I've had so many complications and related conditions that it's amazing I've survived.

With Wegs it's best to take one day at a time. Have goals and dreams, just don't cling to them with tight fists. Be flexible.

[Col 23]

Great outlook - Ill take that on board.
cheers Col 23