PDA

View Full Version : wg



JennyT
04-04-2009, 06:52 AM
Hi
I am Jenny T. 52 years old and have been diagnosed with wg in december 2008.
It affected my sinus, lungs and kidney failure. Thanks to the meds and
dialisys my kidneys are function again so I don't need dyalisis anymore:)
I like to know more about this this wg and what are the long term prognoses
are. Can somebody help me out?

Thanks Jenny T

crackers
04-04-2009, 07:28 AM
hi jenny and welcome.there are no hard and fast rules where WG is concerned.it affects everyone differently.if you read through the experiences of fellow sufferers,posted here in this forum,you will see what i mean.please come back with any comments or questions you may have.there are a lot of good,knowledgable people here who will be more than happy to help.come back soon.
john

andrew
04-04-2009, 01:58 PM
Hey there Jenny...

The WG hit you in the same areas as it hit me. It sure is tough, especially when first diagnosed and you have no real idea what's going on. These days, the prognosis for WG sufferers is better but it still depends on the individual, how he or she has been affected and to a large extent, how treated as well. Glad to see that your kidneys are back online. I assume you're on Cytoxan (Cyclophosphamide) and Prednisone? Are you on anything for blood pressure?

You'll find in many ways you'll have to get used to a 'new normal' where perhaps you won't be able to achieve as much as you used to or you get tired quicker etc etc. Again, it's an individual thing but common across the vast majority of us Weggies is that we need our rest. You've probably realised already that you need to take it easy :D The more rest you give your body, the better chance it has of recuperating as much as it can.

I wish I could give you something more specific :)

have you found your day to day life to be much different after diagnosis? How long were you sick for before you got diagnosed?

Jack
04-04-2009, 05:47 PM
Hi Jenny,
As the others have said, there is no single set of symptoms, treatment or outcome for this disease. My own experience is that I had similar symptoms to your own at the age of 30, but lost my kidneys. However, that was well over 20 years ago and I have managed to hold down a good job all that time in spite of some periods of sickness. Getting a transplant 19 years ago was the breakthrough for me. I could not have done it on dialysis. I recently retired, mainly due to all the drug side effects catching up with me!

coffeelover
04-06-2009, 01:06 PM
HI Jenny,

I was diagonosed in Jan of 2009 at age 50. From what I read that is a common age for this to attack, although you will hear from all on this forum that it can affect many age levels.

We have that Old lady diagnosis in common anyway.
Lisa

Cindy M
04-06-2009, 05:24 PM
Hi Jenny,

I have also been newly diagnosed in Jan/09 at the age of 45. I started feeling sick in November and after one doctors appt after another I went into emergency on Jan 1/09 and was recommended to ENT Specialist by the doctor on call. That was the best thing that happened, after reading my charts and history since November he felt that this was not a typical sinus infection but that I had Wegener's. I seen him on Jan 5th, he set me up for a sinus biopsy on Jan 13th, had an appt with a Rhuematologist on the 14th and got the results back by the 15th. I have been up and down since then, changing my predisone amounts (having to go back up) and changing from methatrexate to cyclophosphamid. I am looking forward to the day that I can lower the preds and hopefully lose puffy round face look

Also, I live in Alberta, is there anyone else out there from this area?

Cindy M

coffeelover
04-07-2009, 11:20 AM
Cindy,

I have been mis diagnosed many times with sinus infections when really I had sinus difficulty due to Wegeners. Do you and any of the other girls over 40 think our women hormones have anything to do with the appearance of Wegeners? I know it is not the cause, but could it have contributed to the symptoms? I am just curious.

Sorry guys to talk this girl talk. I would be glad to have your responses as well
Lisa coffeelover

Doug
04-07-2009, 12:52 PM
We've speculated on many things: would any of us be surprised? Jenny T., welcome to the forum! Isn't Phil a Saquatchian!? No. Let me know what people are called from the province next to Alberta. Your symptoms match many of ours, as noted above. You mention kidney involvement, which is the "severe" form of Wegeners. Read through this forum, and you will find lots of things to be mindful of. I have the severe form of WG myself, but am in remission. I was diagnosed in December of 2003. I'm still dealing with follow-up visits with my pulmonologist, still taking a few medications, but only one directly tied to WG. There's been some serious silliness in some parts of this forum lately, but don't let that get in the way of reading the seriously serious parts where we each share our histories with WG and what we've learned about dealing with it. Sangye brought up the best way of thinking of WG: you aren't fighting it (it's for life), you are floating from one "new normal" to the next. Look for her words as I think she put it a lot better! Like Jack, I recently retired at just short of 61 (which mean the Social Security checks won't come until after March of 2010- never mind, I held back enough money to live modestly and to afford a few luxuries). The vicissitudes of WG and some health issues that came out of my WG-weakened state didn't break me down- I'm generally a very up-beat, happy person- but it did remind me that I may not live into my 90's, like many on both sides of my family did or do. I retired so I could do volunteer work in my community and other things I want to do before (if) I reach a point where I no longer can these things or am (sorry!) dead. As for retirement: I LOVE it!! Being a Weggie isn't all fun and games, so learn to deal with the lows, knowing that you can ask us how we deal with things, what might be the next stage you experience.

Sangye
04-07-2009, 11:30 PM
Hi Jenny and Cindy,
It's nice to have you in the group. Glad you're here, but sorry you're here. The most important thing for newly diagnosed folks to know is that you must have docs who are very skilled in treating Wegs. I and countless others have made the mistake of staying with docs who were okay for more typical autoimmune diseases (eg, MS, RA), but never or rarely treated Wegs. Mine almost killed me.

The Vasculitis Foundation has a list of docs who will consult with your docs for free, and help them manage your care.

The thing I said once that Doug was referring to is that I've learned to float instead of fight. I didn't learn that until pretty recently, and it's not been my natural tendency in life, so I have to constantly remind myself. Wegs is like being in a washing machine sometimes, so just roll with it a bit and you'll get through each spin cycle.

Lisa, though Wegs isn't one of them, most AI diseases affect women beginning in their teens, early 20's or 40's. So the Hormone theory is certainly a likely one. There are many explanations for why that might be. With Wegs, I dunno. It affects men and women equally. Of course, the amount of estrogen exposure we all have could explain that. My guess is they're eventually going to find several causative factors, hormones among them.

coffeelover
04-09-2009, 01:09 AM
Yes, hormones! Well, some of the readings I have done on WEGS says that it affects women mainly in their 50's, right around that life altering "time of life" and that is exactly when I started to "go downhill" as it were.
On another note...I seemy rhuemy tomorrow. Wish me luck! I am feeling good, but in fear that she will find things that I don't feel.
LIsa

JennyT
04-09-2009, 01:27 AM
Hi Coffeelover,
Good luck tomorrow hope everything goes well with rheumy.
I am very tired hemo is way down again.

Jenny T

Cindy M
04-09-2009, 05:49 AM
Yes, it could be the cause, I know that there are times that I am just sitting here and sweating. Not sure if its because of WG or the start of menopause. I will be turning 46 this month so it could very well be the beginning of menopause.

I also wonder if I got this disease because at the beginning of November/08 I went in for dental surgery, I wasn't feeling very well, I was at the beginning of a cold and sniffles. After that surgery I just never fully recovered, took forever for the gums to heal, the aching to stop, then I started to get the sinus pressure, headaches and it was down hill from there. At times I even thought that I had an abscessed tooth. Just wondering that if I had put off the surgery that maybe things would be different.

I went to my ENT Specialist and he was happy with the way my sinuses looked. I was seeing him about every 2 weeks but now I don't have to see him until the middle of June. About 2 weeks ago I started taking cyclophosphamide instead of methatrexate so maybe something is finally working.

Best of luck to you, with this time of year, spring coming....we really don't want to be cooped up in the house all the time. Take if easy and get lots of rest.

Sangye
04-09-2009, 08:27 AM
Good luck tomorrow, Lisa. I hope you get a good report!

jola57
04-09-2009, 06:12 PM
Hi Lisa, how did it go? I hope it's good news.
Talking about hormones, all you men cover your ears :), a friend told me that her daughter in law started feeling pain in joints after hysterectomy, was diagnosed with an autoimmine disorder, then found she was gluten intolerant (and something else which I will try to find out to what)changed her diet and after 2 months all is well.
I will find out more about this and report. wouldn't it be great if all this was about was our intollerance to different substances and once they were eliminated from our diets or surroundings all this would go away. Ah I know its just wishfull thinking but one can dream ;)

Jack
04-09-2009, 08:50 PM
I was diagnosed with borderline Gluten intolerance. I put myself on a gluten free diet and never felt worse! :(

Cindy M
04-10-2009, 10:38 AM
How was your appointment? I hope everything went okay. I have my next appointment with my rhuemy on April 15th. I have to go down to 9 preds a day from 10 which scares me. Last time I went down to 8 I started getting more symptons and felt really weak and tired.

coffeelover
04-10-2009, 11:20 AM
Hello everyone!
thanks for your well wishes. My appt today went as I expected. Or course, I still have WG, but have made small strides toward improvement. I will continue on the MXT for now, but she did lower my pred from 20mg to 17 and 1/2. That I am thankful for as I hate the pred!
She is concerned that my swelling in my trachea will increase, so she wants me to see the ENT soon and not wait until my May appt. Easy for her to say. There is always a long wait to see the ENT. Too many kids need tubes in their ears, I guess!
I asked about taking more calcium supplemnets with magnesium as suggested by my WEG friends and she agreed. I asked about the drug that starts with an A that some of you are taking instead of MXT and she prefers the MXT as the "A" drug has proven in some of her cases to be a partial cause to cancer symptoms. But....she said if the MXT does not continue to work or if my symptoms start to spiral downhill, she that "A" drug will be the next drug of choice she will put me on.
I told her about my anti inflamatory (Dr Weils) diet and we discussed that and even talked a bit about the gluten free diet, as well as the veggan diet. Neither my doc or I are ready for either of those diets yet, at least not in full.
BTW-I lost 4.2 pounds in 2 weeks just by eating the anti inflamatory foods! I am now very comitted to this new way of eating and really do feel better than I have in a long time. It is just too bad that I did not have this dedication before symptoms of WG occurred.
Speaking of symptom...to respond to Cindy...I had the same problem with a business trip to Florida. It was cold, rainy, windy while I was there and the humidity was high, so consequently I got a cold while there that never seemed to go away. I think that was the start of my WG. (OK boys...close your eyes) That and the start of what I would consider para menopause. YOU guys are so lucky you don't have to deal with this girl stuff!
I am anxious to hear jola's report on her friend's new diet.

Doug
04-10-2009, 04:00 PM
:) ...every little step! I can appreciate how frustrating it is to have just little steps, but the weight loss can only be helpful (especially if the diet agrees with you!), giving you just one more reason to cheer for yourself and feel good- better... (that old "new norm" thing, you know!)- in the morning. As a person who spent his work years analyzing data, I wish I had charted my various measures of progress (bloodwork numbers, cANCA) because trends are easier to see. I know. That's what I did for a living! But a person graphing her or his numbers doesn't have to be a statistician to see trends down on a chart. I've used simple graphs to chart weight loss, ignoring the statistical analysis part, just watching the progress, generally down, and it was very encouraging. May you have that point in your treatment where you say, "Man, I feel great today! It took me three years, then I had a severe bought with a herpes zoster infection that still has a grip on me, for pain, for impact. I was hospitalized three times with WG, five (!) with herpes zoster and complications. What's the saying? "That which doesn't kill me makes me stronger"? Mentally, anyway. Haw!

Cindy M
04-10-2009, 06:22 PM
Reading about dieting and watching your weight has given me alot to think about. I must say that I have been feeling quite sorry for myself and eating everying and anything in sight. Not thinking at all about how this would make me feel or its affect on WG's. I want to thank you guys and I am going to make a great effect to change my eating habits and way of thinking.

coffeelover
04-11-2009, 06:41 AM
Good luck wih changing your eating habits. I do recommend it. I do want you to know that I tend to obsess over things and right now my obsession is what I am eating (not a bad thing to obsess about) so what works for me may not be the true alternative for others. Any encouraging I can do along the way, do not be afraid to ask.

Also...thanks Doug for telling me about charting your steps. My husband is always tell me to "write it down and keep track of your pain etc" so of course us wives are not always listening the way we should to our spouses and hearing it from another source just confirms it, so I am going to try. I can only obesess over one thing at a time though, so....wish me luck
LIsa

Doug
04-11-2009, 08:17 AM
:p Lisa- Graphing your numbers is a great way to work off obsessiveness, it's so anal! But in the good sense of the word, of course!

Cindy M
04-15-2009, 10:06 AM
I would take any encouragement I can get, I tend to eat out of stress, boredom, etc. I keep waiting for life to become alittle more stress free to make changes. I think I have to realize that waiting around does not always work.

JennyT
04-15-2009, 11:23 AM
Hi Cindy
You're right I have the same thing to much stress really puts me down and i have one of those feel sorry for myself days. But its easier said then done.
Hope to hear from you
Jenny T

coffeelover
04-16-2009, 12:31 AM
I, too work with too much sress. It seems to be a part of my personlaity, but trying to exercise and working on the anti inflam diet, I am hoping to bring that stress level down.
This week I had to fire someone from work and this causes me great stress and it is not something I enjoy doing. Plus covering the shifts becomes a problem and this has caused me great stressors this week. Consequently, I am not feeling well this week, but hoping it calms down here shortly.
If anyone out there has suggestions (other than yoga....I would need time to get to a yoga class) let me know!

Lisa Coffeelover

Doug
04-16-2009, 01:00 AM
Deep breathing exercises worked for me, but the greatest stress reducer was taking early retirement. That may not be possible for you, but keep it in mind for the future.

Firing someone has to be the worst thing there is to do in a job. No wonder you are stressed this week. Picking up the work they did afterwards is stress on stress because you almost never truly know everything you need to know about how someone else's job is done until you try to do it.

Cindy M
04-16-2009, 06:19 AM
I guess our stress comes from all different angles. I haven't been working since November 2008. I am having alot of trouble with my eyes...double vision, blurred vision, they are red and very sensitive and my right eye has a mass that has developed so it has alot of pressure that is pushing on it. The majority of my stress comes from my children. My husband passed away in 2000 when my daughters were 9 and 10. They are now 18 and 19 and having a hard time with my illness. Some days they see me doing alot around the house, shopping etc. and then cannot understand how I can be sick and not go to work. After my husband passed away I made the mistake of doing everything for them and now I am having a hard time getting them to help without an arguement. Then they tend to fight amongst themselves and put me in the middle. Sorry for blabbing on and on about this but some days I could just go on and on. Thanks for listening.

Sangye
04-16-2009, 07:10 AM
You can go on and on. We'll listen. :)

crackers
04-16-2009, 07:41 AM
cindy you blab all you want.that's what we're here for.and don't get me started on teenage children:eek:john

Doug
04-16-2009, 09:22 AM
Cindy, Cindy. I'm so sorry about your husband. And make it two for not getting me started on teenage children. Furthermore, it's unanimous: we're here to do what we can to help you, to help each other. I doubt anyone can appreciate what it's like to be a Weggie and try to have a "normal" life.

Cindy M
04-16-2009, 01:29 PM
Thank you all for your kind words. And yes teenage kids are at times a breed of their own. I try not to get to stressed but some days it is very trying. Don't get me wrong, they are good girls, I think that we have been through so much that they don't know how to deal with things, feeling, anger etc. we have tried counselling but in the end we go back to the same ways or use what we learned to further our own side of things. They have both graduated high school, the younger one this year, hold down jobs, have many friends, play sports etc so not all is lost. But again, thank you for listening...I must say that I do feel a little guilty about complaining but again thanks for listening.

jola57
04-16-2009, 04:45 PM
Never feel guilty, we are all here for the same reason - we are listened to by friends who understand and listen without judgement, laugh and cry together, and give good advice.
I always say little children small problems big children large problems. I am sorry that you have had such tough times. Having two boys, 22 and 24, I can't relate to having girls but from what I hear its a lot tougher raising them at this age. With WG, we don't necessarily look sick so it's hard for those around us to thinks of us as sick. Maybe have the girls read some of our stories on this forum.

coffeelover
04-17-2009, 04:41 AM
Cindy,

I am the mother of three girls. All Complete opposites and very demanding of my time and attention. I was a teacher in my "first life" and understand the teen years well, but still found some times with girls difficult to deal with. I am so sorry you lost your husband, because doing it alone can be so demanding and difficult. But WE are here to help and vent all you want, we all can understand.
Your girls probably do understand and are just as frustrated with your disease as you are. Occassionally my youngest (18 yrs old) will ask a random question about my illness and I then take that opportunity to teach her something new about this disease. She seems to be getting it. My oldest (age 22) tends to ignore my disease altogether, but she no longer lives with me so it is easier for her to avoid it. My middle girl (age 19) is the most sympathetic and understanding. She got her information right away and now deals with it along with compassion and understanding for her Mom.
I feel lucky to have great children and accept them for who they are. I am sure your children have these same caring characteristics and your constant reminders of your life as it is now will eventually sink in.
Any girl questions you may have, please feel free to ask. I am sure I have been through it all.
Lisa coffeelover

crackers
04-17-2009, 04:56 AM
also i think where the children,of any age,are concerned a state of denial is entered.this type of thing doesn't happen to THEIR mum or dad and the fact that there are no major visual symptoms only backs up their denial.
john.

Doug
04-17-2009, 05:07 AM
also i think where the children,of any age,are concerned a state of denial is entered.this type of thing doesn't happen to THEIR mum or dad and the fact that there are no major visual symptoms only backs up their denial.
john.

Point well taken, John. How long did it take for each of us to accept the fact that our disease is for life, that our daily patterns would involve genuflecting to WG first and foremost, then the rest of the day we could work and play at the "new normal" until WG threw us a new loop to jump through. And so on and so on. Right now I feel great, yet there are moments each day that bring me back to Weggie reality. That family members experience what could be a tragedy until medicine brings us back to the next "new normal" is an area I've not seen explored. Somebody suggested the girls be asked to contribute their thoughts in this forum. I think we Weggies would benefit, too, to hear an outsider's view of how Weggies are perceived by family members. How do they adjust to the parent's illness, knowing the parent will never be the same, can even die from WG?

Cindy M
04-18-2009, 06:04 AM
You're right, small children little problems, big kids big problems. Thanks for the kind words, I have been doing alot of talking with them so I am hoping for smoother waters.

Carol
04-22-2009, 07:38 AM
When I first got sick people would say How are you? That's what Aussies say when they greet you and don't really expect a reply. I'd say Ok thanks. Then after some time I realised that they actually wanted to know HOW I actually was and I would tell them. I've learnt alot from having this wegs ... I'm more compassionate now hearing others woes and I make that phonecall if someones sick or I ask now wanting to know. I've learnt how much I appreciate people asking and sometimes it surprises me who does the caring asking thing. Some people are much better than others. It has angered me that a few "friends" did nothing when I was so sick. I have learnt that I myself wasn't very good at this. Regards Ausssie Carol

Cindy M
04-22-2009, 08:13 AM
I think now a days life is so busy that weeks can go by and you haven't talked to a friend. I know when I was really sick I spent about 1 1/2 to 2 months with no or little contact with some of my closes friends. I never reached out to them because I was pretty much house bound except for doctor's appt and I was in so much pain that I didn't even realize how much time went by. There are times that you do feel pretty lonely with this disease because life is going on around you and you do not have the energy to be part of it. Sometimes I would like to be normal again and be in that circle again. Good for you for making the effort to show care for individuals who need it, that in itself says what a caring and thoughtful person you are. :)

Terri
04-22-2009, 10:33 AM
Carol and Cindy,
I understand fully what you are talking about.
Before Wegs, I always would say , "I'm fine or ok". Now, when somebody asks, and like you say, if they seem truly concerned, I say if it is a bad day. I usually don't go into details but I seem to be more honest about things like that.
Before I was diagnosed in Aug.07, I had a sense about me that I would not live through the next year, it was just how I was feeling.
My brother was diagnosed with multiple myeloma in Oct,07. In April he developed Guillain-Barr'e Syndrome and Nov.08 plasma cell leukemia. He passed away Nov.16th. The whole time he was always concerned about me. I would have done anything to take more of some disease so he would have had less. It just didn't turn out that way.

Sangye
04-22-2009, 11:52 AM
Wow, Terri, I'm so sorry to hear what your brother went through. I've never heard of someone having a series of diseases like that. And you newly diagnosed at the same time. I don't know how you did it. Kudos to you for having such compassion.

I still struggle with the "How are you?" thing. People just SO want and need to hear you're doing better. They don't get that Wegs is not linear, like getting over a heart attack or something.

I have a good idea of who really wants to know, and I give them a quick honest answer. The rest seem satisfied with "I'm okay." They feel better because they've asked, and I don't feel let down because they didn't really want to know.

coffeelover
04-22-2009, 12:30 PM
" I've learnt how much I appreciate people asking and sometimes it surprises me who does the caring asking thing. Some people are much better than others. It has angered me that a few "friends" did nothing when I was so sick. " Regards Ausssie Carol

I was just telling someone today how even the slightest recognition of my condition was very much appreciated by me. I was telling this same person that I was not afraid to reach out and ask for the support I needed to get through the beginning stages of this diagnosis. I feel for those who cannot or will not reach out. That is why this forum is so wonderful, we can reach out in a variety of ways and we each know what the others have gone through.
When others ask how you are doing, It kind of validates the reason for feeling ill.
I walk around every day with a trach in my neck and sometimes the first thing people say is "when do you think you can get that out?" I respond the same as Sangye. I figure out who really wants to know and I go from there. I know they ask out of genuine concern, but once I have explained what they wanted to hear, they move on and I am back to square one.

I do notice that with the trach people are nicer to me. Believe me, I have used that to my advantage at times. ha ha! Just for your information- I am hoping in one month, when I see my ENT, that I will be able to have the trach taken out, but it really is not that big of deal to me anymore.

quote from Sangye-"I have a good idea of who really wants to know, and I give them a quick honest answer. The rest seem satisfied with "I'm okay." They feel better because they've asked, and I don't feel let down because they didn't really want to know."

They want to know, because it reassures them that this disease will probably not happen to them, so they are affirmed in their safe and secure healthy world. You seem to be getting along OK, so again, they are OK. You can't blame them. As Carol said, unless we have experienced it, we probably were not good at being comapassionate to others with problems. I know I, too, am much better with compassion towards those who struggle.
However, as I ramble on, I have no, ZERO compassion for those who complain about nothing.....( like not liking a color of paint or not being first in line). Now that I am sick, I tend to let 'em know about my lack of tolerance. I highly recommend it!
LIsa

coffeelover
04-22-2009, 12:34 PM
Terri,

I am so sorry to hear about your brother. My thoughts are with you. I have lost a niece at age 8 to a rare liver disease and a nephew as a baby. I hope the stress of your loss does not bring your disease down. I am sure he wants you to continue to fight this disease with everything you got.
We are here for you!
Lisa

Doug
04-23-2009, 12:47 AM
You ladies tied it all together very nicely! I've pretty much sorted out who means "medically speaking, how you are" and the social, generic "how you are" people, yet there often is a sense I've either spoken too much or too little, that I haven't answered the question. Five-plus years past diagnosis, I am blessed with a tolerable plateau, an agreeable "new norm", so I don't have to fudge on how I'm doing or get into medical details unless asked specifically. I hope I remember the last few entries when and if I need good advice on how to answer "How are you!"

Cindy- when I needed to use a cane, people (even younger ones, in their teens) opened doors for me, addressed me as "sir" (!), and offered to do small favors. Once, when waiting for public transportation, in the days before I could drive again, an absolute stranger offered to drive me wherever I needed to go. At work, in one hallway where certain people took your half of the narrow passage, people slowed down and twisted sideways to avoid bumping me, especially after one of the almost knocked me down because I couldn't move out of her way fast enough. The day I came in without the cane, as an experiment to see if I could get along without it, one of the hallway hoggers actually ran me into a brick wall because I wasn't stable enough yet to twist to avoid her. When I hit the wall, you'd have thought I was a footballer (your kind, not mine) the howl I put up. "Oh, did I hurt you?" ""Yes!" Red carded her, I did!

Cindy M
04-23-2009, 02:08 PM
Hi, I have a question but I am not sure how to start a new thread. I guess I am a little computer illiterate. If anyone could help me with my questions that would be great.

I am currently taking 9 Prednisone a day, and 2 cyclophosphamid a day. I will be going down to 8 prednisone on May 13 and my question is "At what point shall I notice the puffiness going away?" Or will I be like this until I am off the prednisone all together? Could anyone answer these question PLEASE.

pberggren1
04-23-2009, 04:54 PM
You may have to be off the Pred completely for about at least 6 months before you start to notice the puffiness going away. At least thats the way it was for me.

Jack
04-23-2009, 05:11 PM
My moon face reduced to the level where I did not notice it at 10 mg, but it took quite a while. I'm on 10 mg now and look thin and drawn! :(
Be careful what you wish for. ;)

pberggren1
04-23-2009, 06:26 PM
Oh, to be thin and drawn again. Those were the days. Though my picture was taken when I had been off the Pred for about 2 years.

Jack
04-23-2009, 08:31 PM
The trouble is that I look "ill" thin rather than "lean and fit" thin.

pberggren1
04-23-2009, 09:34 PM
I see what you mean Jack. I would rather look healthy as well.

Cindy M
04-24-2009, 07:53 AM
Thanks for your help, I guess I was just hoping that the puffiness would go down as I decrease the preds. Also, how close to the time do you need to take the preds. My mom has me a little worried because if I don't take them within 10 minutes of the time she becomes a little worried. I sometimes take them within the hour depending on whether I am sleeping or where I am.

Sangye
04-24-2009, 08:25 AM
Cindy, you don't need to worry about getting the exact time of the pred. It doesn't stay in the body for long, but it keeps working past the 24 mark. Most of us have discovered it's best to take pred in the morning-- decreases your insomnia.

I think my moonface went down around 10 mg, but can't remember for sure.

Cindy M
04-24-2009, 08:27 AM
Thanks for the quick reply, it's a question that I always wanted to ask but one that I kept forgetting.

andrew
04-26-2009, 02:02 PM
My Moonface stayed with me at least 6 months after I stopped. It went as it came, almost ovenight.

Cindy M
04-27-2009, 11:05 AM
Thanks, I am still taking 9 per day and have been on preds since Jan 13/09. Not sure how long I will be on them, hoping to go down to 8 on May 13th. Can't wait to be off of them. Hate looking into the mirror. Much easier if you can pretend that you still look normal.

coffeelover
04-28-2009, 07:32 AM
Cindy,

I started taking pred in October after trach surgery. I started at 80 mg and am now down to 17 1/2. I too can't wait to look at a normal face in the mirror, but I know the pred helped me get over over a rough patch and I have accepted my look. My rhuemy is taking down my dose at a very slow pace and I do not anticipate getting off pred completely for quite some time, if at all!
I hope you get off the pred sooner than I will and I hope you come to accept that beautiful "moon face" we all know so well.
It took me 6 months months to come to that acceptance stage....I wish you a quicker acceptance rate.
LIsa

Terri
04-28-2009, 11:12 AM
In Aug will be two years for my moon face and I'm down to 5mg.
I've noticed certain foods make me feel more swollen. Especially if I eat pasta of some kind:confused: I've been trying to cut out sugars and seem to have more energy. I'm still not losing any weight .:mad:
Hope everyone is doing well today.:)

andrew
04-28-2009, 07:04 PM
Trying to lose weight on Pred is diabolical! I really hope things start moving in the right direction for you soon! Anything with Sodium in it makes me feel swollen. Also anything highly processed makes me blow up something fierce. White bread for example.