Moon face causes

[katarzena]

I haven't been on the site for some time, so I've decided to write again. :)
I have been quite busy with school, I was out of school for (all together) I'd say 3 months. It was hard but you know what.. I managed to get almost all A grades and I'm really surprised and happy about it! It wasn't easy but I did it.. (not braging just..happy :) )

Anyways, what I've wanted to ask is if anyone has noticed how not enough sleep and salt make your water retention even worse? WOAH!

My wegener's is okay now, I'm still on IV cytoxan (only 3 left!) and steroids 10mg. It's been two weeks since I've been on this dose but I don't see any decrease in my side effects (moon face, hot flashes, big belly etc)
Does anyone know how long approximately it takes for it to decrease even a bit? Hm I hope I'm not that UNLUCKY after all not to loose moon face even a BIT while on low dose.
Btw - hot flashes are driving my crazy!


Have a nice day everyone :*

[Jack]

Congratulations on your good results! :)

I'm sure someone will be along soon with more recent knowledge, but I seem to remember it taking several months on 10mg of pred before I lost my moon face. I still had a slightly more round face than I used to have, perhaps because I was a bit overweight, but it was nothing that anyone noticed. In fact, people who did not know me well did not notice the moon face either. I think we are just very sensitive to changes that we see in our own appearance.

[DEE]

congratulations on your results
dont worry about moonface it will gradually go done but it is not an instant thing
i find that the hot flushes seem alittle worse when i change preds but soon settle down water retention is about the same for me no matter what amount i take but as we all say its different for us all
glad to hear things are beginning to work out for you
DEEx :)

[elephant]

Congrats on getting A's, you worked hard to get those...your not bragging! It took me a month or two to notice a decrease in the moon face. I really had one too!

[MCC]

Well done on your results!

I've been down to 10mg pred for a week and a half now and I noticed the difference after just a few days and my boyfriend says he has too. I feel more like me now.
Maybe you don't notice the difference but others do?

[csgaippe]

I too still have the moon face, so misery loves company! Congrats on all your hard work!
Cathie

[Sangye]

Katarzena, even though I don't have the moon face anymore, my face still swells up if I have a lot of stress, overexert or don't sleep well. It did that for the 2.5 yrs I was off pred, too. The sweats and hot flashes are all much worse if you eat salty foods.

I've noticed that if I take a small dose of a diuretic (20mg furosemide) it really cuts down on the sweats and hot flashes. Made a big difference when I was on the higher doses during ritux infusions.

Congratulations on your A's! Atta girl! :D

[katarzena]

Okay thanks for answering :) So there is a hope that I will feel more like myself after a long time. :D

[Jack]

Definitely! :)

But this may well be a combination of the reduced effects on your body plus coming to terms with your New Normal. So perhaps not all the way back to your old self, but good enough, considering what you have been through.

[Carol]

I lost my moonface somewhere between 6 and 7 mgs. It was almost as much a shock losing it as getting it. I looked in the mirror one day and it was gone. Best of luck. Carol

[brocky99]

I had a moonface when first diagnosed for about 3 months or so but it went as they reduced the pred to 5mg, when I had the flare in Jan they upped pred to 60mg again and the moonface returned now on 25mg of pred and its still there but not as bad. The swelling was so bad that people I have known for years walked past me because they didnt recognise me. Thankfully I look nearer to my old self again now. I have been back on the aza 6 days now and do I feel sick all the time for last 2 days even with anti sickness tablets its doin my head in but im sure it will settle down again.

[marta]

I lost my moonface somewhere between 6 and 7 mgs. It was almost as much a shock losing it as getting it. I looked in the mirror one day and it was gone. Best of luck. Carol

That is music to my ears (or eyes as the case may be.) I have a ways to go yet, but the idea of the face (and perhaps trunk area) getting back to normal, even if it's the 'new normal' as Jack put it, is awesome. I really don't like the feeling of the 'stranger' looking back at me in the mirror, or the stranger playing with my kid and husband when I look at photos of us doing stuff. I avoid reflective surfaces and am constantly shocked when I see them and that silly looking 'stranger'. I'm not a vain person, it's just shocking and weird.

I was about to throw in a couple of pics to prove my point, and after looking through them have changed my mind... eeeek.

[pberggren1]

I think people would be interested in those photos Marta. I know what you mean about the stranger in the mirror. I look at old photos and easily identify with them but when I look at post Wegs ones I think yuck.

[Jack]

I think we all live with the problem of self image, even those who would insist that they are not vain. I've never spent too much time on my appearance, but I do find myself avoiding reflections and photographs.

[pberggren1]

I hear ya Jack!

[elephant]

My face blew up on prednisone, but I still smiled a big one. When someone would take a picture I visioned myself a "Supermodel", and the pictures didn't come out so bad.

[Sangye]

I avoid cameras and mirrors like the plague. I still don't recognize this as my body. It doesn't match the body in my mind!

I've always been self-conscious about my appearance, though. I think that's different from vanity.

[Col 23]

I have no vanity left, its just about being comfortable and going to tent land to see if I can find something to wear. Down to 13mg of Pred this week, but noticed I swell more when I take the Methotrexate for a few days. Just trying to keep the grooming up but even thats hard some days. I am sleeping a lot more every time I taper by 1mg and have no energy everything is hard to do. Sorry just had to have a whine..
Col 23

[Lightwarrior]

I've never really been concerned about appearance, but I do avoid mirrors and find it odd that when I catch my reflection it doesn't look like me.

[elephant]

Don't be afraid, my face was so big that when I got my picture taken at the doctors office a year ago, the new nurses thought they were taking care of a different patient ( kept looking at me and then they look at the picture of me on the computer), kept asking are you so and so? Have you lost weight? Your hair is brown in this picture. It was quite funny.

[Sangye]

I have no vanity left, its just about being comfortable and going to tent land to see if I can find something to wear. Down to 13mg of Pred this week, but noticed I swell more when I take the Methotrexate for a few days. Just trying to keep the grooming up but even thats hard some days. I am sleeping a lot more every time I taper by 1mg and have no energy everything is hard to do. Sorry just had to have a whine..
Col 23
Col, how frequently are you decreasing the pred by 1mg?

[Col 23]

Every 3 weeks as advised by Rhuemy
cheers Col 23

[Sangye]

Well, that's certainly slow enough. Do you notice that the sleepiness and fatigue ease up after about a week at the new level?

[Col 23]

The doc said that I have to suffer for about 4 days after tapering, I usually taper on a Saturday and then its MTX on Tuesdays and I always feel tired and yuk after that for a couple of days.
Just no energy, no motivation, if I get one or two days out of a fortnight that are good I feel lucky. Been tapering for last couple months.

[Sangye]

Yes, I was thinking it might be the case that you just have to wait it out for a few days each time. You're at the point where you really start to feel the effect pred has had on the adrenal glands. At higher doses that was masked. It's also at this point where you can see how much you're really exerting yourself. Before you might have been able to get away with more because the pred was giving you a boost--masking the exhaustion.

Don't lose hope. Assuming the Wegs is getting under control, you'll get through this. Avoid the temptation to boost your energy with caffeine or sugar-- then you'll really suffer when you taper even more. And ease up on any exercise and exertion.

[Col 23]

Thanks for the feedback. Wed to Sunday has been complete wipe out, sleeping all the time and no go. Having my monthly blood test on Monday so Ill know where Im at.
cheers Col 23

[Sangye]

I hope they can help you somehow.

[DEE]

Thanks for the feedback. Wed to Sunday has been complete wipe out, sleeping all the time and no go. Having my monthly blood test on Monday so Ill know where Im at.
cheers Col 23

hi col
must have been the week for total wipeout mine was mon to wed tappered by 2,5 mg the week before to get me down to 20mg by body didnt like it at all symptoms starting to appear back !!!
but people at birthday bash said that they thought i look better face not soo round !! famous last words as when i look well its usually when somethings about to go wrong if you know what i mean it always sets alarm bells ringing
i got use to tent department as everybody keeps tellig me least of my worrrries
well heres to another week brighter and better i hope
take care of you DEEx

[Col 23]

Hi Dee
Dont feel so alone, sorry your suffering too. Still so fatigued cant move, blood pressure down to 102/50, I think my adrenal glands have stopped working.
Im only tapering by 1mg every three weeks, this has been the longest wipe out so far. Feel so weak.
cheers Col 23

[pberggren1]

That sounds like too low a blood pressure to me Col.

[elephant]

Col the blood pressure is low, but acceptable. Maybe you need to taper slower...instead of tapering every three weeks...try six weeks. Ask your doctor. Feeling run down is a sign that you probably need to stop the taper...but always talk with your doctor.

[Deanne Hull]

Congratulations Katarzena on your A's. thanks for asking those questions, i was curious as well as to how long it takes to lose all the side effects.

[DEE]

col when i felt wipeout for those days last week wg told me to put back to were theyb were to give my body recovery time as symptoms stared to appear again DEEx

[Doug]

Me, too, Col23. I used to have naturally low blood pressure like that (100/67 was typical, with 97/59 once before I had to be taken home from work when I felt weak and asked the plant nurse to check my bp: 75/50! I'm not sure how I maintained consciousness! Once there, I leaned over to pick something up, passed out briefly, then found the guy who drove me home wanted me to go to the hospital emergency room. Glad I did go: I ended up needing two transfusions to deal with a low red blood cell count that was related to anemia brought on by Cytoxin. They kept me in hospital for six or seven days.