Mom of Newly Diagnosed 18 Year Old -- HELP!

[Sangye]

LOL-- just posted the reply above and saw the time 12:06 am. I thought, "Wow, I must have to change the time setting in this new program. It's way off." I was thinking it was around 11:00. Guess I'll just adjust my own head.

[pberggren1]

I get a little whacky sometimes being on Cellcept.

Bonnie, I was 26 when I was diagnosed. It came on very fast. Healthy one day and then 6 weeks later in the ER and couldn't breath through nose, massive pain like I have never had before or since, lost 40 pounds, couldn't walk, couldn't taste or smell, hard to swallow, etc. You get the idea. The ER doc, who is now my nephrologist, said that I probably had about another week to live. But thank God he was brilliant and had me diagnosed in 15 minutes.

Bonnie, I have a telephone with North American long distance bundle. You or your son can call me any time.

Home: 306-791-7086

Cell: 306-774-5801

Please don't hesitate to call. I don't think your son realizes the danger he is in. If you guys want me to call you, let me know on this site.

Over and Out,
Phil of the north

[Jack]

I've been on Cellcept for a long time now (probably one of the first to use it for Wegs in this country) and I like to think that my mental state is OK. I do get more emotional than I used to and don't handle stress anything like as well, but I allow myself that.

[elephant]

I myself know that I will have to be on cellcept for the rest of my life. I would like to stop the cyclosporine in the future, but need to talk to my rheumatologist about this or mabey even one that specializes in WG. I personally think that if I go off cellcept I will have a full blown flare of WG. The cyclosporine did not keep me in remission and of course no one knew (Docs) that I had WG . I will cross that bridge when it happens. I know I am anxious about my WG and hoping a flare doesn't happen.
It's like I go thruough a body check every morning.
eyes- not red
joints-not swollen or painful
lungs- not short of breath
nose- no blood or crusting or painful
how I feel today- ok
You all get the picture....

[Jack]

Cyclosporin did not keep me in remission either, hence the switch to Cellcept. No problems since.

[pberggren1]

How many years have you been on Cellcept Jack?

[Sangye]

I think the increased emotions are more likely due to pred than Cellcept.

Elephant, I know exactly what you mean by the full-body scan! When people ask me how I'm doing, I have to pause while I do a "system scan." They don't know what the pause is about, of course, so most interpret it as me being annoyed by the question.

Phil, I hope you get to talk to Bonnie's son. Because you were so young when you got Wegs, you can really help him.

[pberggren1]

So do I Sangye.

Bonnie, please respond - I'm extremely understanding and easy to talk to.

[BonnieB]

pberggren1- thanks for your insight, I do believe my son's age is both helpful and hurtful- he loathes the idea of "sickness" so its difficult to get him to get up n times for his med schedule- on the other hand he is very determined, which helps.
I try to respect his autonomy and still steer him to his meds. He does get hot swollen joints- one day his left foot the next day a thumb, etc- I think it s the wegenr's and he has fewer and fewer the last month , i think the rituxan has kicked in and his sed rate is down to 20- the lowest ever. We go back to mayo next month- the docs there he really likes and respects- i believe he'll listen to them. T he other "bonnie" is very lucky her son is doing so well- mine lost 30 lbs, is still skeletal despite all the steroids. This disease is so variable- reading everyone's experiences is so mind boggling , no two are alike, even faintly similar!
Thanks for all your help, thanks to all of you for sharing!

[Sangye]

The hot swollen joints are a Wegs thing. I'm glad to hear they're decreasing along with the sed rate. And really really glad he's got Wegs specialists at Mayo!