New here!

[marta]

Hey Angela,

Glad you're on the heavy hitter. At least things can start moving in a positive direction now. I found that when I first started taking the drugs, they would knock me out for a few hours each day as my body was getting used to them. My GP at the time told me that they shouldn't be doing that, but she didn't tell the drugs or my body that because I was still getting knocked out each day. I liked it though, as it gave me a much needed solid nap each day. Eventually the pred took over and no more naps, no more getting knocked out. My body got used to it within a couple of weeks. I also increased my cytox by 50% this January and again felt a little whomped for the first week or so, but then it goes back to normal for me.

Yes, lots of water. I wasn't a big water drinker before, but boy oh boy I am now.

I also have a four year old at home who goes to the petry dish known as pre-school, so I'm always a little afraid of what's going to come home with her. We have disinfectant gel bottles all over our house, and all of our hands are dry and cracking from all of the washing we do. I too keep a low profile these days, which is OK because I want to keep my pred moon face outta sight.

Take care, best of luck, and a quick remission.

By the way, Wegener's always has bad timing. Ask anyone on here. I feel the same way.

[alhartzler]

I started on Ctx last April - initially had some nausea but that calmed down after a few weeks. I did lose quite a bit of hair - big bald patches - so I ended up shaving it pretty short and wore cute hats my mom made for awhile. Definitely tired and lots less energy than before - I have to be careful of my to-do lists getting overwhelming...and not feeling guilty when I just need a nap. I drink about a gallon of water a day to keep the ctx flushed through my system - that was the recommended amount I was given when I started (200mg ctx daily.)

As far as the exposure, I would be as careful as you can. That said, I have six children and they bring home every germ imaginable! I couldn't really stay away from them while being treated I wore a mask for awhile when going out, especially to church or the kids' schools, but that got to be a pain and I don't anymore. I've been pretty lucky as far as other illnesses go - a couple of bad ones this winter, but I decided as a mom, I couldn't live my life in a bubble and I just deal with whatever comes.

Wow, and I thought 3 kids was alot! Good for you on staying healthy and active! Yes, I will play it by ear for now on making a decision on work. Thanks for the info on water and your experiences with hair loss. Not looking forward to that. But I have to keep reminding myself that it's all better than going into kidney failure!!! So, I'm gonna try to keep as positive an outlook as I can. I feel as you do about living life in a bubble--I just have too much to do for that! I will be careful, but not to the extent that I shut myself off completely from some sense of a normal life. I may have to stay out of the O.R. for a while, but that can wait. At least I can still be active with my family life. Thanks again for sharing your story and experiences.

[alhartzler]

Hey Angela,

Glad you're on the heavy hitter. At least things can start moving in a positive direction now. I found that when I first started taking the drugs, they would knock me out for a few hours each day as my body was getting used to them. My GP at the time told me that they shouldn't be doing that, but she didn't tell the drugs or my body that because I was still getting knocked out each day. I liked it though, as it gave me a much needed solid nap each day. Eventually the pred took over and no more naps, no more getting knocked out. My body got used to it within a couple of weeks. I also increased my cytox by 50% this January and again felt a little whomped for the first week or so, but then it goes back to normal for me.

Yes, lots of water. I wasn't a big water drinker before, but boy oh boy I am now.

I also have a four year old at home who goes to the petry dish known as pre-school, so I'm always a little afraid of what's going to come home with her. We have disinfectant gel bottles all over our house, and all of our hands are dry and cracking from all of the washing we do. I too keep a low profile these days, which is OK because I want to keep my pred moon face outta sight.

Take care, best of luck, and a quick remission.

By the way, Wegener's always has bad timing. Ask anyone on here. I feel the same way.

Thanks Marta,
I hope this puts me into remission quickly. And, after I write stuff, I think about how silly it sometimes sounds. Like bad timing. There is NEVER any GOOD timing with a disease such as Wegener's or any other. But, I get carried away with my thoughts and venting, etc. as I'm sure everyone does from time to time. Yes, I'm not looking forward to the puffy face again either. My face puffed up like a balloon the last time I was on prednisone. And now, I'm at an all-time high dose personally, at 60 mg per day. I really despise prednisone, as I'm sure everyone else does too. Is there ANYTHING I can do to prevent the weight gain with this stuff???? Frustrating. Good to hear your thoughts. I hope you also can get off all this toxic stuff once and for all, and achieve a long-lasting remission!!!

[ArlaMo]

Angela,

This was a helpful book Amazon.com: Coping with Prednisone, Revised and Updated: (*and Other Cortisone-Related Medicines) (9780312375607): Eugenia Zukerman, Dr. Julie R. Ingelfinger M.D.: Books

I wish I had known more about the effects of pred when I first started on it. My (ex) Reumy told me almost nothing and I was a little unprepared going into it. Gained quite a bit of weight - ugh! I've also picked up a couple of anti-inflammation diet books, which have also been helpful. AVOID the salt!

[alhartzler]

Thanks, I will check into the book on prednisone. Hadn't really even thought of looking for a book on prednisone?! But what a great idea. Especially since it looks like I'll be on it for a while. Will also look into the diets on inflammation. Thanks again.

[Sangye]

Ditto to ArlaMo's book suggestion. I never knew anything about pred weight gain before it happened, either and I didn't have good internet access back then. Salt and sugar are the big no-no's.

I don't know how all of you folks with kids do it. I can barely manage with two dogs and a little bird. Kudos to you.

[marta]

Thanks Marta,
I hope this puts me into remission quickly. And, after I write stuff, I think about how silly it sometimes sounds. Like bad timing. There is NEVER any GOOD timing with a disease such as Wegener's or any other. But, I get carried away with my thoughts and venting, etc. as I'm sure everyone does from time to time. Yes, I'm not looking forward to the puffy face again either. My face puffed up like a balloon the last time I was on prednisone. And now, I'm at an all-time high dose personally, at 60 mg per day. I really despise prednisone, as I'm sure everyone else does too. Is there ANYTHING I can do to prevent the weight gain with this stuff???? Frustrating. Good to hear your thoughts. I hope you also can get off all this toxic stuff once and for all, and achieve a long-lasting remission!!!

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.

[drz]

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.

The little girl seems like a good skier. No falls! How old is she? Looks like nice ski area and lots of fun.

[marta]

Hey drz,

She just started skiing off the leash - the video was taken on her third time skiing solo (i.e. without one of us holding the leash). We're beaming proud parents.
She's four.
Yeah it is a beautiful ski area. One of my fave places in the world. I absolutely love spending my time up there. It's almost a spiritual experience for me.

[snooz23]

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