Wegeners on TV

[Masha]

Just watched tonight’s episode of The Resident on FOX TV. One of the story lines toward the end was about a patient who they thought had a mental illness but blood tests showed it was Wegeners. It had hit her brain? They acted like this was something easily treatable. And as soon as she started to get the infusion, she was all better. Huh!
Well at least it hit mainstream TV, and they briefly described it. Both nurse and doctor saying they had only read about it.
More to write to y’all at another time. Thank you so much for all your help, I have followed it.
Now dealing with another molar extraction, second in five days. Must be removed before next weeks infusions start. I don’t need an infection during infusions. Oral surgeon said he will not do major extractions until 2 months after infusions. So I am lucky it appeared now.

[vdub]

My wegs hit the brain. Yeap, made me crazy as loon for sure. At least, that's what the wife will tell you. Actually, things have been relatively good since January. Had a small elective surgery that is now fully healed, so we took a 21 day cruise from Miami through Panama Canal to San Francisco. Got home a week ago and next, we're going to Kauai #1's family. Should be a hoot. We have a cabin right on the beach, so should be a hoot. I'll have to find the rerun of the wegs segment on the resident, It was once on House, too.....

[Alias]

WG also got a mention on Orphan Black, many months ago.

A more educational/factual description appeared in the Sunday New York Times magazine section some time ago. I may have posted a link to it. They have a feature where they describe a patient with a mystery illness and then reveal the diagnosis at the end. I only had to read a few paragraphs to know what was going on!

[Alias]

Off topic Vdub, but seeing your post reminded me of your AK trip. Cindy Abbott (the musher with WG) did not race this year, but her twitter feed seems to show she is active and doing OK.

Keep traveling and enjoy the beach.


My wegs hit the brain. Yeap, made me crazy as loon for sure. At least, that's what the wife will tell you. Actually, things have been relatively good since January. Had a small elective surgery that is now fully healed, so we took a 21 day cruise from Miami through Panama Canal to San Francisco. Got home a week ago and next, we're going to Kauai #1's family. Should be a hoot. We have a cabin right on the beach, so should be a hoot. I'll have to find the rerun of the wegs segment on the resident, It was once on House, too.....

[vdub]

Tom, hope you are doing well... My live-in Iditarod groupie kept me informed of the race. She mentioned that neither Cindy or our local friend were going to be in the race this year. Cindy isn't a kid anymore, so she may of hung up her spurs -- its a tough race.

Daughter got a new posting and is in Louisiana now. Surprisingly, she likes it there. We still have many friends in AK, so we still have good reason to visit.

[Aster28]

Just watched tonight’s episode of The Resident on FOX TV. One of the story lines toward the end was about a patient who they thought had a mental illness but blood tests showed it was Wegeners. It had hit her brain? They acted like this was something easily treatable. And as soon as she started to get the infusion, she was all better. Huh!
Well at least it hit mainstream TV, and they briefly described it. Both nurse and doctor saying they had only read about it.
More to write to y’all at another time. Thank you so much for all your help, I have followed it.
Now dealing with another molar extraction, second in five days. Must be removed before next weeks infusions start. I don’t need an infection during infusions. Oral surgeon said he will not do major extractions until 2 months after infusions. So I am lucky it appeared now.

Hi Masha, Help! I saw a dentist specializing in prostedontics last week as I’m trying to get some dental work in a not what I’d call a remission, but have a little more energy after my second full round of Rituxan ended the 12th of February. I have to see an oral surgeon Thursday to talk about my needing at least 4 posts and crowns to replace teeth that have fallen out from the WG. My sinuses may need to be lifted. I am sort of worried about the shots they give you or the foreign object flaring me. Are you doing any premedication like pred or Benadryl etc?

I didn’t notice much after my first Rituxan treatment except that when I became sick the day after this last Christmas, my flare was milder. Each time I have attended my family get together I flare writhing 24-36 hours so I was very thankful when I didn’t get the laryngeal edema and the other strider symptoms. In Feb I finished the 12 and the steroids in the IV make me feel better a couple of days, but then I noticed I still felt a little better even a week out and then the next week and still now. Granted I am talking about not being able to get out of bed to being able to putter around the house and get up an do it again the next day in my “gilded cage”.

My Rituxan treatment is a little different. The rheumatologist at Emory told me they used to do it over 4 weeks, but found it did just as well or better and was easier doing the treatments a longer day the first week and then coming back in two weeks. Same dosage but 2 times rather than 4. My rheumatologist also said it may take a few treatments to see if it works for me.

I did the cytoxan methotrexate steroids infusions back in the late 90’s and it did put me in remission for a couple of years, but I had terrible side effects. A doctor in Chattanooga was afraid to treat me with it again because of the cancer risks. Knock on wood, the Rituxan has been easier on my system.


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[Masha]

Hang in there Gilded Cage Lady. The oral surgeon just removed my second molar of the week this afternoon. These two are so far back I am not having implants. Last year was my year of implants and crowns. If yours are upfront, just think of it as having a movie star smile. I keep trying to look on the bright side, and hearing about the traveling some of the guys on this site are doing it gives me hope. Pete is part of my ‘grey group’ and he sounds wonderful, my hero.
I haven’t taken anything other than my regular Prednisone during oral surgery, but you may want to run it past your rheumatologist to see if he wants you on antibiotics. I was coincidentally on some for sinus during last extraction.
With the killer flu going around this year and my resistance being so low we put a medical alert sign on our front door.
It reads, ‘A person with a compromised immune system resides here. If you have a cold, cough, flu or sniffles please do not enter.’ If a repair person is coming they will think twice, especially when my husband goes to the door wearing a mask and gloves. The flu has just about ended, but it took the lives of 500 people in the Carolinas, and I fell into two categories-comprised immune system and over 65.
Second series of infusions start a week from tomorrow. From all the people on this site who have helped me, I now understand and accept that I cannot conquer the world the next day. After the first series I thought it would be like a penicillin shot in the 1950’s and I could ice skate away in a day or two. But this time I will be patient and not overdo things.
I think maybe a person or two at your big holiday gatherings may have a bug. I will no longer do buffets. Think of all the hands that touched that serving spoon. Wegeners has turned me into a germafobe. My plan is to put Mupirocin in my nose before I go out and Sinu-pulse when I get home. A dear friend who has had lung and breast cancer told me she feels much safer with outdoor parties.
As I have said before, things could be worse. Last week, in my development, a walker threw his cigarette on dry grass. Winds were high, very high. Three house are now ashes. People and pets made it out OK, but they didn’t even have time to get their cars out. All I could think about was how do they get their medication for the night. Next day I read that the Red Cross saw that they had their prescriptions. Now, could you imagine, having our disease and your home is a total loss. I am sure they had insurance, but I don’t want to digress too much. I just tell myself there are things worse than Wegeners, ie. Wegeners and no home....
Masha

[whatthewhat]

A more educational/factual description appeared in the Sunday New York Times magazine section some time ago. I may have posted a link to it. They have a feature where they describe a patient with a mystery illness and then reveal the diagnosis at the end. I only had to read a few paragraphs to know what was going on! if it's the same article I am thinking of, with the dad, that was a pediatric -onset Wegener's, a teenager. (I know the mom.) As far as I know it was the first mainstream media mention of a child or adolescent having Wegener's!