This is a thread for those who have not posted recently and want to update

[Lightwarrior]

Lightwarrior, glad you came out ok, we have had some here in Vancouver too, one a number of years ago has left permanent damage to our house, a deep crack in a wall that just will not stay repaired, how is your house?

The house we rent was only built 5 years ago so it is up to code. No damage at all, sidewalk though is buckled up in one place and 2 inch crack in another place. There was a 5.2 afterschock today, I was on the road between grocery store and home and didn't feel it, but Alexis and Christopher had to get under their desks at school.

[jola57]

Must have been scary for them.

[Lightwarrior]

I made a game of it when we rushed into the street so they wouldn't be scared, so they thought it was cool when they got under their desks in fact Alexis told her teacher that her Grandma told her to lie next to her desk because if the roof cave in the desk would crush her and the area next to her desk would give her space to survive. I learned this from a trainer we had for the Crisis Incident Stress Management (CISM) who was at 911 World Trade Centers, many major earthquakes around world. As things collapse you die if you are under something, but if you lie next to or curl up next to something that is substantial, a desk, a bed that will leave space beside it when it is crushed and compressed you stand a chance. He said he has found no live survivors who were under something. I suppose if it was mild and only ceiling tiles were falling, under would work.

Brianna, my 2 year old (soon to be 3) ran up to me Sunday night, turned around shook her little bootie and said, Grandma, look at me I'm an earthquake. What a character

[Sangye]

I'm an earthquake....hilarious!

[katwoman]

Hi Lisa, I haven't posted for a while either, there never seems enough hours in the day and life does not slow down for anyone!

I totally understand how you feel about pred & methotrexate, I was hoping that mine would be tapered down (since my flare up last november) but unfortunately my sinus aren't behaving and since being back to my ENT (now I see him on a weekly basis to have them cleaned out) he has decided that it needs to be increased and not decreased as my Rheumi had suggested :-( not happy about this as you can expect....

Anyway, just wanted to drop in and say hello to everyone and let you all know that I do constantly think of you all and hope you guys are all doing ok.

[elephant]

Katwoman, how much prednisone are you on? I am currently weaning off prednisone for the third time. The Rheumy thinks if I can't get off prednisone....that means I am having a WG flare...she wanted to increase my cellcept, but the other doctor does not think that is good. I am seeing my WG specialist in June. In the mean time I am on duty alert for ear,eye and sinus symptoms getting worse. I am guess when our sinuses are inflamed we can't smell. It is off and on with me. It is so annoying...especially if you go out to a fancy restaurant which I don't do much at all. Order food and can't taste it. Oh, I thought today was going to be the day that I tasted food!

[katwoman]

Hi Elephant, ENT wants me back on 20mg (was on 15mg hoping to reduce to 10mg). My sinuses are really taking a battering at the moment, it is so tender up there and like you I miss my sense of taste and smell, I take big sniffs when I am eating or drinking something nice, but alas it doesn't help, worth a try though, lol!!

Make sure you stay watchful of your ear/eye and sinus symptoms, you definitely don't want them getting worse, my recent sinus infection actually pushed the DCR tube I had in my left eye out, woke up in the morning with the tube sitting across my eye (very uncomfortable), unfortunately they couldn't save it, but the ENT said he isn't sorry it has come out as he thinks alot of the sinus infections is worsened by the tube being a foreign object in my sinus area.

[elephant]

Well Katwoman lets hope you and I can get off this stupid prednisone without flaring! I am hoping for some good answers when I go to Cleveland Clinic. Your on methotrexate too? I will keep you updated on the prednisone stuff. Let me know how your doing too.

[katwoman]

Yes Elephant, it would be wonderful to get off the Pred...it's not a friend I would like to keep in contact with ;-) hehehe. Yes i'm on 25mg of Methotrexate once a week, not a big fan of that one either, but at least my energy levels and joint pain have improved.

Please keep me updated on how you go, I read this web page pretty regularly but don't say much, which is unusual because in real life I always have heaps to say...lol much better verbally then with the written word!

[Sangye]

Kat, If you can't get below 20mg pred without major sinus issues, it makes me wonder if the mtx just isn't strong enough. Many docs increase the pred instead of changing the main immunosuppressant. Needing to have your sinuses cleaned out every week while on 15m-20mg pred doesn't seem right to me.