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LOL-- babble away!
Right, got sidetracked there. The only meds that I'm on is Bactrim and prednisone when I flare up. I never got it totally under control in my opinion due to not being able to keep a rheumatologist. I saw a weg's researcher / head of rheum dept at a university hospital once, then my follow up the next month was rescheduled repeatedly until I got a letter that he'd retired. My appointment with another the dr was 2 hours late, they said they didn't know where he was and so I left. A third moved out of state before my appointment. I've been seeing allergists and an ENT for the coughing/congestion and it was just a few days ago that the connection was made that it was all related to the weg's. I see the ENT again in two weeks who is going to consult with a wegs specialist to figure out what to do now. They're concerned that there is probably some sinus and lung infection which is frustrating that my GP just kept blindly refilling the Bactrim and I had no monitoring.Originally Posted by Sangye
Hi LilyPony,
Wow, I don't know how you do it. Wegs and 2 toddlers??!! I can't imagine staying free of infections with exposure like you have, much less how you can find the energy and strength to parent small children.
What meds are you on? What other areas are involved? Oh, and BTW-- welcome to the group!
I suggest you try (sigh) yet again to get a Wegs rheumy involved, though I can't believe what you've been through trying to get one! It's best for you to see a Wegs doc yourself rather than going through a 3rd person. Too much gets lost in the translation and you have no way to ask questions. If your ENT works with a Wegs doc, you still don't have someone overseeing everything. Like you've experienced, things fall through the cracks.
I've had numerous "lung infections" that never resolved with antibiotics and that turned out to be lung hemorrhaging. Many others on here say the same about unresolving sinus infections.
The way it was described to me, LilyPony, is that my rheumo said, "I am the team leader. Everyone else should go through me." My ENT says, "I'm the plumber -- I'm working on my area, but I'm taking my cues on your disease from Dr. Yee." I think that if I had happened on to my ENT first (which could have happened, he's on the Vasculitis Foundation's site), he would still have made me go see a rhemo before doing my surgery.
One huge reason to see a rheumy is that you want to have regular bloodwork done which may provide clues to the progress of your disease, and can at least certainly alert you to times when your inflammation is higher. Then too, rheumos are used to working with pred (or any other immunosuppressents) very specifically and can try to keep you on the smallest possible dosage to control your symptoms, doing the least amont of damage. I was on fairly moderate amounts of inhaled steroids for what they thought was asthma, and I have already weakened my bones (I'm only 44 and African-American, so should have had stronger bones to begin with). I don't think a rheumotologist would have been so cavalier about adding steroids any time I had a cold, etc. So one of the things my rheumo needs me to do is continue getting bone density scans on a regular basis.
LilyPony - If you have Wegener's there is a very good chance that the symptoms of sinus and lung infection are nothing of the sort, but are a result of this condition. If this is the case, then steroids alone will not control it and it is urgent that you see someone who knows what they are doing before more serious damage occurs. Please see a rhumatologist with Wegener's experience as soon as you can.
Jack is right -- one thing that have been shown to never work long term is steroids without immunosuppressants. Considering that I was on them for five years with my "asthma" they didn't stop my throad from accumulating scar tissue or my the cartilage in my nose from collasping. I'm healthy otherwise, but the disease was still doing very silent damage.
Even though my ENT sees all the Weggies at JHU, he still would never adjust my meds, make treatment recommendations or even comment on how active the disease is. He said "I just take orders from Dr Seo (my Wegs rheumy)."
Last year when my lungs were hemorrhaging it only looked like pneumonia at first. I paged the rheumy on call at JH-- a non-Wegs doc. He said to stop taking the Cellcept and come to the ER. I only missed two doses but the Wegs went wild. When I saw my Wegs doc he said, "Don't ever stop the Cellcept unless I myself tell you to." I asked "What if I'm on fire?" and he replied, "Take the Cellcept and then hose yourself off."
Sangye when the rheumy thought you had pneumonia were you coughing up yellow? congestion? chest pain? short of breath? Just coughing with out junk? Or was it the chest x-ray to confirm it?
Even when I've had pneumonia for real in the past, I never cough up nasty stuff. With both pneumonia and with lung hemorrhaging, I get very weak (as in hard to lift my arms), lots of chills/sweats, tight chest, short of breath and often have chest pain.
My chest x-rays usually look fairly normal-- only slight cloudiness that usually gets called "infiltrates consistent with mild atypical pneumonia." The CTs show the real mess, though. The ER docs are usually shocked to see the CT, since by then they've completely chalked it up to a minor virus.
Hey everybody, thanks so much for you insight and helpful information. I have realized just how important it is to have a relationship with a specialist. I will do a more complete introduction tonight after kids are off to bed. This whole thing was just downplayed to me after diagnosis and I (nor my GP) didn't realize how important monitoring would be. The first rheum actually told me not to listen to anything I read online because it didn't apply to me. It was contained in my lacrimal area and would never be a problem as long as I stayed on the Bactrim. Stupid me, I know.
An ordinary rheum in my area that accepts my insurance has a wait of 6-9 months for a new patient. The only rheum experts that have been located over the last few days are researchers who aren't seeing patients. I just started with the ENT a few weeks ago without an inkling that it might be related to the wegs. He is working very diligently to get me in with the appropriate person as quickly as possible and in the meantime he is running bloodwork, scheduled chest xray next week, and in touch with one of the researchers who will advise him while I wait to get in with a rheum. He's hoping to get me seen by a rheum within 2-3 months.
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