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[marta]

This is so good to hear Suzanne. I too can't stand pics of myself right now. It's not only the distorted pred face, but also that deathly look, it's quite disturbing.

Are you following any particular diet or just omitting said foods. I eat pretty clean, and cook everything from scratch, and have only gained an extra 15lbs above my normal weight, but it sure has done a number on my body appearance/distribution wise. I'm hoping that once I get the rtx, I might have more energy and can start doing some exercise that will strengthen and shed some of the unwanted evil I've accumulated over the last 10ish months.

[alhartzler]

Angela,
Glad to hear your Cleveland visit was a success. I hope you rec'd my other private message responses to your questions....I wasn't sure if I did it right?

Sounds like you have a good plan and am happy you went straight to the specialist....so much time can be wasted and incredible amounts of damage done to our bodies messing around w/ docs who don't know what to do with us (unfortunately much of my hearing is gone due to this fact). I was also on CTX last year and did not experience a whole lot of problems w/ it while I was on it, however when I view pics of myself from that time...I appear rather deathly and I think my family was quite worried. Quite a lot of hair was lost, luckily I had a lot to loose. I have also been a lucky one who has not gained a lot of weight on pred. ( I have been on 60mg a day, 3 separate times over the last 1.5 years)....actually since dx I have lost weight. This is due to the fact I completely changed my diet....I have been gluten-free, whole, fresh foods for almost 2 years (don't get me wrong I still indulge in desserts, wine, chips, etc. every now and again).

Good luck and keep us posted. Cheers~ Suzanne

Hi Suzanne,
I will look into the private messages. I am not sure if I received, and am so sorry I have not yet responded if I did! I am seriously thinking about changing my entire way of eating. I'll have to do something to keep the weight down for sure. I'm already feeling bloated after only being on it for a week. Thanks for your warm wishes. I will be in touch, and check on those messages.
Angela

[alhartzler]

Angela, not to worry. I write train of thought style, without ever really going back and checking out if what I wrote makes sense... which is why I often cringe when I read some of my posts. Thoughts like - " I hope I didn't offend someone " , "Oh, that can be interpreted about five different ways", "Man do I sound like a goober" - often go through my head as I re-read posts that I have already allowed to 'go live'. I just wanted to let you know that we all feel that feeling of 'Why now, Wegener's?' and let you know you're not alone in feeling that.

After reading some of the other posts on here, I should mention that when I say I'm back to normal, I mean Weggie normal, not pre diagnosis normal (as far as energy goes). Pre diagnosis I could do a lot of things, now I go to the ski hill and do a few runs with my little girl - here we are skiing a couple of days ago (I'm the one in the green jacket constantly hoovering behind her) YouTube - TheJasperlife's Channel but can't do a full day of skiing the bumps and bowls like I use to. Oh yeah, my hair is quite the joke too. I call it 'my three hairs', but oh well, at least I get to hang out with my beautiful family, so all is good.

Thanks for the reassurance on my posting. I appreciate so much knowing that I am not alone in all my thoughts, doubts, frustrations, etc. I really thank everyone for sharing their stories. I think it's great you can still ski, and enjoy some normalcy, especially with your family. Regarding hair, I'm waiting on mine to fall out.....BooHoo. Hope it doesn't happen, but had some hair loss with methotrexate the first go around, so I've got a sneaky suspicion it'll happen with CTX too. Keep in touch. Love to hear from everyone.

[alhartzler]

Just an update. I've been on the CTX for almost 2 weeks now. Not any major problems so far, just increasingly more tired than usual, and a little nausea off and on. Drinking tons of water. Can't really complain too much. Here's the greatest news though.....My nose miraculously seems to be getting a little better for the first time since diagnosis. I am not having near as much crusting or spontaneous bleeding. My sense of smell even seems to be improving. I am ecstatic! Can this be a result of the cytoxan already? I didn't expect that really. I just hope I can stay infection free and that my lab work stays ok. Anyway, hope all my fellow weggies are doing well out there.

[Sangye]

Angela, that is great to hear!

[alhartzler]

Sangye, Yes, thank you. I am wondering if it's cytoxan or prednisone, or a combination? I am just so happy that the nose seems to be improving. I hope you are well also. Thanks for noticing my small victory, even if it may be short-lived?!
Angela

[Sangye]

It's probably mostly due to the pred at this point. As you get closer to 4 wks the ctx starts to kick in more. Rather than it being a short-lived thing, it bodes well for you that you are having good improvement so soon.

[alhartzler]

Sangye, I am also hoping it means I am responding well and will continue to respond well. Had some nose bleeding today, but still minimal as compared to in the past. Had labs today, so will see how things are looking hopefully by Friday. Today, my chest feels a little heavy and tight. I'm not sure what this is all about?? I had some small granulomas on my lung CT a few weeks ago when I went to CC. Very small, and was just told I would need another CT in about 2 months to compare. But, I never felt anything abnormal with my breathing/respiratory. So, I'm kind of baffled by this, as this is somewhat a new thing. I have had asthma in the past, mainly as a child, but this is different. I can kind of hear it in my voice also, if that makes sense. I guess if this persists, it will be back to the doctor I go. How are you?

[Sangye]

Angela, please call your doctor today about the new lung symptoms. It's very easy to develop lung infections while on ctx, and pred masks symptoms like fever.

[alhartzler]

Thanks. Chest feels better this morning. I should correct myself also, that when I went to CC I did feel a little different in the chest, but not quite as heavy or tight. Anyway, if this persists beyond today, I am going to head back to my rheumy. Thanks for bringing that to my attention.