First appointment

[Texastatoogal]

I am seeing my doctor today for the first time since she called to tell me I have the wg. I am very nervous. I don't know why, I mean just because my life is never going to be the same? Why should I be so nervous? Lol

trying not to let my mind wonder to much, it likes to make up huge scenarios!
Thanks for listening.
:)

[Dirty Don]

Best of luck to you...the 'dreaming' is understood...we don't know why or how we got into this situations, so we imagine our ways out of it or at least better than it is now. Nerves? Who's nervous? I wasn't...oh, I was in a coma...never mind. Don't worry about being nervous...you have enough to worry about as it is! TTgal, this is the beginning of the ride...it's been kinda slow for now, it will pick up after today's appt. Actually, for a bit, you will feel better with an accurate dx and drugs prescribed and a kind of time schedule set up for you. Keep asking doc questions and if you don't understand, ask again! Best to you today!

[annekat]

Well, you may be at the appointment by now, or on your way home.... I'm sure you must feel some relief that you have passed that milestone and now know what your treatment plan will be. Best of luck, and let us know! We will be able to help with what to expect next.
I know I felt a lot better once I knew I was on the right meds.

[Texastatoogal]

Saw my primary. She feels we caught it early. She says the blood test say I am negative, but she is convinced I have wegners. She is sending me to a rheumatoid dr who will consult with a pulmonologist that discovered my stenosis a couple years back. She is not going to put me on an immune supressent. She will let the other 2 do it. I am still on 60mg prednisone, until Sunday. Then she wants me to go to 40mg.

[annekat]

Saw my primary. She feels we caught it early. She says the blood test say I am negative, but she is convinced I have wegners. She is sending me to a rheumatoid dr who will consult with a pulmonologist that discovered my stenosis a couple years back. She is not going to put me on an immune supressent. She will let the other 2 do it. I am still on 60mg prednisone, until Sunday. Then she wants me to go to 40mg. It sounds like your primary doctor is on the right track and is smart to send you to a rheumatologist and will let him or her decide on your immunosuppressant, if it is agreed upon by the two other docs that you have WG. I know that there are people with tracheal stenosis who don't have it, though, from research I've done, and I know there is at least one stenosis group on Facebook where you might get additional support. I'm not sure how your doc is so sure you have WG, although it is true that bloodwork alone often isn't conclusive. Normally we get a biopsy of an affected area in order to get a diagnosis, but not always, and those aren't always conclusive either. I hope you will see the rheumy pretty soon so you don't have to go too long without proper treatment, if you do have WG. And the TA alone is a big problem, with or without the WG, so best of luck with that. I'm not sure why your doc is reducing your prednisone if she thinks you have WG and aren't on an immunosuppressant. But 40mg. is still a good amount and perhaps that will hold you over until you see the other doc. I myself was on that kind of pred taper a couple of times, until I was officially diagnosed and went back up to 60mg. along with the immunosuppressant, CTX. After that the tapering was a little slower than before, but I was down to 30mg. after a couple of months, I guess. Now hovering around 8 or 9mg. and having to taper very slowly. If you stick with us, you will learn more than you ever wanted to know about prednisone. :rolleyes1:

[Texastatoogal]

I apparently have had other symptoms that never made sense to her before. I would get a lot of bronchitis, and the only thing that would help was predisone. I didn't know that was not normal. Then I got the tracheal stenosis, and then 2 weeks or so, I developed vasculitis. The dermatologist did a biopsy on one of my spots. I know I asked my dr what the results were and I honestly do not remember what she said. I am going to call the derm and ask for a copy of her report. my primary did say she didn't think everything I have is a coincidence. My spots had started to go away with the predisone. but they are returning. Not sure what that means. I would love to know the side effects of the predisone. I was reading earlier on someones post that it messed up the stomach and her esophagus. is that common? Any and all input is welcomed!

[annekat]

Oh, sorry, I guess you mentioned your spots before, and I forgot. And if they did a biopsy of one and it came back positive for vasculitis, then I see why your doc thinks what she thinks. There is lots on here about the side effects of prednisone, which you can find by doing a search, but they include moon face, buffalo hump, weight gain from increased appetite, stomach issues, and more! But not everyone reacts the same way. Some get very nervous and irritable, others get very energized, or we may get both of those, plus sleeplessness. The worst two for me were the moon face and the weight gain, but both of those have subsided now that I'm on much lower doses. I never had a lot in the way of stomach issues. And on the thread you read earlier, it turned out Deb's doc said the 5mg. pred she is on wouldn't have caused that much damage to her stomach and esophagus, especially since she takes an acid blocker, so it must be something else.

[Texastatoogal]

I saw my new dr. A rheumatologist. Dr. Martin. The previous bloodwork that was done by my primary was negative for wegener's. My dr(primary)knows this but is convinced I still have it. I have to many symptoms that she feels it is not a coincidence. Dr. Martin is sending me for a ct scan of my lungs and sinus area. Also for more blood work and waiting to get information from other my other dr.s. He wants to confirm I have wegener's before he starts treatment. I am glad he is taking a conservative approach since it seems, from what I have read, that my wegener's is not aggressive as of now.