Grumblings

So I have a huge problem (literally).

I gotta get this weight off ASAP. Especially the moonface and buffalo hump.

I work in the beauty industry, and have been asked to do a gala like I did last christmas. It's not a nice industry but essentially I am selling myself (indirectly through make up - not that kind of selling yourself) and they are remembering me from last Christmas, and I can't say "yea Ive gained 65lbs and my face is a fishbowl"... Long story short, they don't want anyone selling their make up.. Essentially they want you to look good so other people will buy their make up.. lol.. marketing.. dirty world.

I'm not sure how much physical activity I can do (joints swell) but at this point I am eating very little, and starting Imuran next week.. Speaking of which, how will I tolerate this? I already have a sick stomach most of the time, so I hope it doesn't worsen for me. Essentially I told my rheumy that unless he was going to start paying my bills, I need to get off the prednisone. My body has been destroyed. I will never wear shorts, tshirts, or anything in public ever again. I have purple striae from head to toe. Even places I didn't even gain weight. (like my neck??? wtf??? there is no fat on my neck!)

I'm down to 10mg pred starting Monday... I need this to go... Even if I could lose 15lbs.. Anything at this point. I'm already sensitive about it and I'm scared they are going to make a stink over it.

I am so whiney about this.. lol.. My husband is ready to throw me to the birds! Me and my erratic panic posts!

It sounds like a real stressful situation for you. My thoughts are that trying to lose a lot of weight real quickly is usually a big health risk. Throw in meds that make it hard and Wegs waiting to flare and the risks are much greater.

I think most of us have days often when we rue the things we have lost from Wegs or other things. Acceptance and adjusting to my losses and my new"normal" is tough, but often it is the best way and easier than banging my head against the wall. It doesn't mean giving up and I can still work toward further recovery while also accepting current limitations even though this is often very hard. I am still struggling with these issues two and half years after diagnosis with the past year and half being in drug induced remission.

What is most important to me is trying to enjoy the extra time I was given for as long as possible. That means trying to preserve my health as much as possible so I can stay out hospitals if possible and to include as many fun things as i can into my life without over taxing myself or endangering myself by making poor choices. I often do anyway since this involves lots of trial and error but I try to learn from my mistakes and focus on what is most important to me.

Hi Carrie,

Would agree with Drz about being very careful health-wise with any diet.
I hated being on prednisone too. So really understand how you feel about the side-effects. Unfortunately for us it is a necessary evil.
When I was down to about 10mg, I started the Paleo diet. It's is a good diet for us weggies as it reduces inflammation in the body.
It is a tough though. Need to cut out all wheat and dairy. But it does work and you will see the effects quickly. Check out Rob Wolff website for good advice.
I also walk the dog every day for an hour... don't push myself, just a gentle stroll, and that helps too.
As for the imuran, I have been on that for eight years with no problems. Could tolerate it much better than MTX.
Would advise that you talk to your Doc before you do any diet...the most important thing is that you stay well, and get off the prednisone at a sensible rate.
Yvonne

Carrie, I can understand how you feel.

If it were me I would drop that marketing job. Too much stress. Beauty is on the inside, not the outside.

Please do not eat less than what is healthy. You need your nurishment and nutrition. Eating less is not a good idea at all unless you are overeating of course.

Pres is nasty for sure. Everyone wants to get off it. But you cant rush it unfortunately.

I have been on Imuran for about 18 months this time around. I seem to tolerate it quite well. No outward side effects that seem to bother me anyway.

As far as exercise, just do what you can. Sit in a chair and so some arm stretches for 5 minutes or so. Even that will help. I know cardio is the weight loss exercise but you have to start somewhere. I got a treadmill this summer and have not used it yet. I am in too poor of shape yet to use it. Hopefully some time this winter I can get on it for a few minutes each day to help build up my stamina.

Hi Carrie,

I have to agree with Phil and Drz.

Not eating much is not going to help you lose weight. Your body is going to store the fat because it wont know when it is going to get food next.
Try eating small meals at least six times a day so that you can trick your body into thinking more food is coming and therefore wont store the fat.

I know this is easier said than done........ and I should be listening to my own advice, because I do none of this (except some walking).

The most important thing is to look after yourself and not to do anything that will cause you to flair or even obtain an injury.......please don't resort to eating a very little amount as this wont help you to get through your days (we all need as many spoons as we can get to achieve this, right)

Take care

I agree with everyone's advice and just would add that they would have no right making a stink about you not losing weight or any of the effects of pred.... you did not ask to get this disease, you are under medical care, and they can't expect you to just fit into their mold. I do understand your disappointment that you can't be what you were before in appearance. But you are still a beautiful woman with a lot going for you, and I'll bet you'd be able to make yourself look glamorous, and do justice to their make-up, in spite of everything. If they don't like it, they'll have to find someone else. Or if you don't feel comfortable with it, you shouldn't do it. Christmas isn't long from now and I think it would be pretty hard on your body to try to lose weight that fast. I hope you will feel better on the Imuran than the MTX and perhaps other things will improve, too. I think with time you will look and feel like your old self again.

Carrie..here's the thing ..you are selling make-up. It doesn't matter how big you are ,by your pictures you are still a beautiful woman. So what if you have gained weight,it's something none of us can help and anymore they are showing more plus size models. So I wouldn't worry about it. Believe me I know its sad not to look the same as before but if people can't get passed it then that's there problem. Put on your best face and smile and be happy...you'll do good.

Don't sweat the weight.... Seriously, it's not a big deal -- especially for make-up. Trying to lose it quickly would be a big health issue, not to mention a big downer, because as long as you are on pred or any of the other weight gain stuff, it's just going to be frustrating. Accept the way things are (you look great btw) and press let the show go on.....

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Originally Posted by vdub

Don't sweat the weight.... Seriously, it's not a big deal -- especially for make-up. Trying to lose it quickly would be a big health issue, not to mention a big downer, because as long as you are on pred or any of the other weight gain stuff, it's just going to be frustrating. Accept the way things are (you look great btw) and press let the show go on.....

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I think everyone on here has given you excellent advice. The only thing I could add is that have you considered making lemonade out of your lemons? Tell them that you are going to teach women this year how to minimize their flaws, for example if they have a moon face from steroid use how do they shade with their makeup to make the best of it? If they have scarring, how do they hide it? How do they compensate for a too short, too long, nose , chin etc. get the drift??

Hi folks,

Thanks for all your advice and kind words. I wasn't sure how to reply, still not quite sure... I ended up turning down the gala this year, I just told them the truth - I am going through treatment for an autoimmune disease and I just am not feeling up to it. Not only would I have to deal with the stares from people I haven't seen since last year, but I just don't feel like plastering on a smile and doing it to be honest.. lol.. Call me the grinch, but I just can't deal with it this time around.

I am in a bit of a rut. I am over the weight thing sorta because once again I am feeling lousy. Really puts things in to perspective, when I feel good I start fussing about weight and appearance and how this disease has made me ugly. However the past week has been terrible. My doc had me TMPT (or tpmt.. I dont know.. something like that) to see if I could take Imuran and I can. So he put me on that.. AND YAK.. Hair is falling out, monster migraines... Like I'm talking about massive migraines that make me gag when I move they are so bad. Hopefully this goes away....

Wow, I'm so sorry to hear how bad you are feeling.... I hope you have told the doc, if you think it's from the Imuran! I hope those effects are only very temporary.

I'm SURE you made the right decision about the gala, given how you would have felt about doing it, how uncomfortable you would have felt. You are not the grinch!! Anything where you have to plaster on a smile doesn't sound like what any of us needs.

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Originally Posted by annekat

Wow, I'm so sorry to hear how bad you are feeling.... I hope you have told the doc, if you think it's from the Imuran! I hope those effects are only very temporary.

I'm SURE you made the right decision about the gala, given how you would have felt about doing it, how uncomfortable you would have felt. You are not the grinch!! Anything where you have to plaster on a smile doesn't sound like what any of us needs.

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I agree with Anne, but I am worried about your migraines. You need to be seen for these.

Carrie ...did you tell yr dr. about the headaches.just because the test says u can take it maybe this is a side effect you should mention to him. And maybe it's best yr not around a bunch of people right now..you don't want to catch something.lol
And about the weight thing,one of the drs. in the kidney group I see is into holistic medicine and nutrician (sp) instead of all the medicine so I went and had a consult with her Tues, nite. Now I am almost 5'2" and now way about 117 lbs ...gained 15 lbs through all this and she told me that alot was from the preds and also this is a inflamatory disease and some of the food we eat can cause inflamation.She did a bmi test on me and I am 42% body fat!!!!! and told me to stop eating sugar, wheat, corn,soy, dairy,meats..the things I can eat are freash or frozen fruits,veggies,nuts,seeds. I called my boyfriend when I left crying ...2 days before Thanksgiving and I can't eat. Well I threw that theory out the window.I am gonna watch more ( but not starve ) and start up a more excerise regiment along with yoga.
Sorry to ramble ..hope u start to feel better and really talk to the dr. about yr headaches and stop worring about yr weight. Stress and worring only makes things worse.

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Originally Posted by carriej22

Hi folks,

Thanks for all your advice and kind words. I wasn't sure how to reply, still not quite sure... I ended up turning down the gala this year, I just told them the truth - I am going through treatment for an autoimmune disease and I just am not feeling up to it. Not only would I have to deal with the stares from people I haven't seen since last year, but I just don't feel like plastering on a smile and doing it to be honest.. lol.. Call me the grinch, but I just can't deal with it this time around.

I am in a bit of a rut. I am over the weight thing sorta because once again I am feeling lousy. Really puts things in to perspective, when I feel good I start fussing about weight and appearance and how this disease has made me ugly. However the past week has been terrible. My doc had me TMPT (or tpmt.. I dont know.. something like that) to see if I could take Imuran and I can. So he put me on that.. AND YAK.. Hair is falling out, monster migraines... Like I'm talking about massive migraines that make me gag when I move they are so bad. Hopefully this goes away....

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Sounds like you are making some progress in accepting some things. It is good that you have the enzymes needed to safely take Imuran but if you are still having serious side effects, there can be other issues that warrant attention. I have been on generic Imuran for almost two years now and do not having any discomfort from it or notice any thing other than my liver enzymes are more elevated so I had to cut back on my cholesterol meds.

Did you start with a small dosage and have a small taper up to therapeutic levels? I started at 50 mg and went up 50 every two weeks till I got to 200 mg daily. I had lab work weekly during this time too to be sure I was handling it OK? All our meds have risks and side effects so the goal is to find the ones that work best for you with least amount of problems. I hope they can find some thing for you that works well without lot of bad side effects. Best wishes for better health.

I started at 125mg and that's where I still am. Other than the hair loss and headaches I am not having any vomiting or anything (which is the one my doc seemed to be concerned about).

I go for bloodwork on Monday, so I guess I will find out what's up then. I am also going weekly, but since I started on a Saturday and the hospital where I live was overbooked I could not get in until Monday - So like.. 10 days on it.

My eyes have been bloodshot for a little while too (since before imuran) but appear to be getting worse.. Wonder what is going on there.

I'm just getting so frustrated. At this point, I feel like if I didn't care so much about my health I would be in a way worse state. I fight for every test, every appointment, every issue. I wish I lived in a bigger city with more available to me medical wise. It takes so long to get an appointment anywhere. For example I am seeing an eye specialist for my eyes on Dec 4. I want in NOW.. I am terrified of going blind with this disease, especially since my eyes have gone south on me a few times during this disease. God only knows what will transpire between now and Dec 4. There is only the 1 specialist in my city. He is a lovely man, but I understand he is swamped.

I know what it is like to wait and wait and wait Carrie. I am in a small city and find just the opposite now that my Wegs doc is right in my town. Just hang in there and continue to be persistent and fight for what you need. At the end of the day you have to be your own best doc, no way around it.

So how is your vision? Is it getting worse?

Preserving your vision is important and one can quickly go blind from Vasculitis damage. I was told at my first meeting with my Wegs doctor after discharge from the hospital that I needed to find an eye doctor that would see me within 24 hours if I had any serious changes in my vision. His comments made a big impression on me when he said you lost your hearing from the Wegs so we want to try preserve your vision. I found a local optometrist near my nursing home at the time who assured me she would see me in those circumstances in less than 24 hours and get an opthamologist involved for treatment (surgery) if that was necessary. Blood shot eyes can mean many things. I had scleritis as one of my first signs of Wegs before I had been diagnosed and I got treated by an optometrist who worked with my opthamologist who I saw regularly (every four months).

I would make sure they knew your diagnosis and symptoms and ask about their emergency services.

I don't think bigger cities always provide better services. I have a relative who almost died in the ER room of one of NYC biggest hospitals and had to fly back home very sick to get the care needed to save his life. I know when I was first admitted to local hospital with Wegs my daughter (big city girl) could not believe how quickly they did all the tests and put me into a room. Unfortunately they had no idea of what I had or how to treat it so I almost died, but I did get in quickly. And once they figured out my Weg diagnosis they had me transferred to a bigger hospital within a few hours where I could get proper treatment.

My eyes are nasty. They have been "goopy" since diagnosed with wegs. 3 months ago when I seen the ophthalmologist he said there was NO sign of vasculitis in eyes and I was relieved. He wanted to see me every 3 months to make sure it stayed that way (which is the appointment coming up on the 3rd). However one of the first things that happened to me was light sensitive, blurry bloodshot eyes. My eyes are not hurting me, but I do find myself rubbing them a lot and they are definitely blurry. HOWEVER - saying this I am not seeing double anymore like I was when I was on high doses of pred.

It's complicated because I wear glasses (used to wear contacts, but too scared to irritate my eyes now) and I do have bad vision. I don't get up to pee during the night without putting on my glasses. So it's like.. is this normal vision loss (my prescription tends to go up every few years) or is this wegs related. Sometimes if I blink and rub my eyes my vision clears. I just find I'm always picking at them or digging at them because they're irritated.

On the plus side I did lose 10lbs.

After Wegs but before the cataract surgeries I had an extremely strong prescription for myopia. I couldn't look for my glasses till I found them. The meds missed up my vision a lot with excess dryness causing excess tears much of the time. The dryness would cause a film that sometimes got a bit better with blinking but generally returned with a few minutes or seconds. Artificial tears helped me a lot to reduce irritation caused by dryness. Refresh was the brand my optometrist recommended.

At your age, you may be getting a bit more myopic with the passage of time. I remember that my vision didn't fully stabilize until I was in my early 40s. Shortly after that, I developed the need to wear bifocals:wink1:. My concern for you would be if your eyes continued to be bloodshot and you continued to have a lot of matter forming in and around your eyes. I'm like you - very nearsighted. I don't think I can think without my glasses on.

My eyes are goopy and blurry as well, but that is not a sign that Wegs is affecting your eyes. At this point you probably don't have active Wegs.

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Originally Posted by pberggren1

My eyes are goopy and blurry as well, but that is not a sign that Wegs is affecting your eyes. At this point you probably don't have active Wegs.

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Phil, how much pred are you on now? I think that is what caused most of my vision problems until the cataracts got bad enough to require surgery. Now I got 20/40 vision and can get buy without any glasses for first time in 60 years.

Carrie, congrats on losing 10 pounds! That is an accomplishment. :thumbup: I'd love to lose 10 pounds right now. I, too, wear glasses and have for 50 years, and of course, now wear bifocals. I've had a bit of double vision off and on, which has been better lately. Maybe it was the pred, as you suggest. I also know I need a new glasses prescription, as it's been a LONG time. So I guess I'll start there. I had some problems similar to yours earlier in my treatment.... redness, watering, an overall tight feeling around my eyes. They are much better now.

I'm on 8mg of pred right now. Pred has affected my vision over the years but the CRVO has had the most effect.

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Originally Posted by annekat

Carrie, congrats on losing 10 pounds! That is an accomplishment. :thumbup: I'd love to lose 10 pounds right now. I, too, wear glasses and have for 50 years, and of course, now wear bifocals. I've had a bit of double vision off and on, which has been better lately. Maybe it was the pred, as you suggest. I also know I need a new glasses prescription, as it's been a LONG time. So I guess I'll start there. I had some problems similar to yours earlier in my treatment.... redness, watering, an overall tight feeling around my eyes. They are much better now.

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My optometrist told me it is hard to get an accurate correction when medical issues like varying blood glucose levels and pred meds are screwing up your vision. Cataract surgery really helped and so did getting down to lower pred level.

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Originally Posted by drz

My optometrist told me it is hard to get an accurate correction when medical issues like varying blood glucose levels and pred meds are screwing up your vision. Cataract surgery really helped and so did getting down to lower pred level.

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That's interesting. I'll definitely mention WG and the meds to the optometrist. I don't have the problem with blood glucose levels and am now at 10mg. pred. I probably won't even get around to making an appt. until sometime in the new year.

Guess who got the plague! *%+¥}£~*|*.

that is how I feel.

My husband drug it home Sunday. I woke up with it Monday morning. Went to the hospital for my weekly testing on Monday and got some "just incase" antibiotics. I take septra everyday anyway. Still coughing and stuffy but I think I'm going to live. Doctors scared the crap out of me though.

And here I was all eager to work this week.

Things happen so fast for you, Carrie! I hope you get over it as fast as you got it, and that hubby and you both feel better soon.

Hubs feels fine, didn't even miss a day of work. He slept all day Sunday, and Monday after work he slept, he's got a bit of a cough now but nothing like me. I spent a few days in what I like to call delirium...lol... Coughing up lots of stuff and lots of colored stuff coming out of my nose. A bit concerning but I have no fever, so I don't know what to think of it. I go see my doc on Monday anyway and more testing.

It hasn't been a good week. Sick to my stomach also, putting that on the Imuran.. Yakyak.