Yeap the moon face,the wanting to eat, lets not forget the mood slings and sweating. i was wondering about eye sight changes? Muscles being effected? I already learned about the ligament stretching at about 6 monthes. Skin changes took about 3 monthes for me. The brusing was only a month or 2 into it. What else? Trying to remember.
Dee I have the neck hump too, although it has gone down a little bit - it's actually quite uncomfortable at times when lying in certain positions. It's also got a lovely coat of downy white fur - how very attractive!
Downy hair on my lovely moon face too, and I still overeat despite only being on 7.5mg of pred. When I was first admitted to hospital I'd gone completely off my food and had only been eating porridge for 2 weeks beforehand, chucking my sandwiches at work and skipping dinner. I also had IV pred and within a week in hospital my husband was smuggling in share bags of Doritos and sausage sandwiches! However I wasn't getting fed much hospital food as there was an awful lot of fish on offer which I just cannot stand.
The other side effect I notice the most is leg cramps, usually in bed in the middle of the night which disrupts my sleep and my husband's when I start wriggling around and yelping in pain.
Luce keep an eye on those leg cramps.....they could be caused by low potassium or calcium or magnesium. Another cause that we been talking about is blood clots. I did have some cramping in my calves when I was on high doses, and I did sweat alot. I think it could be due to having low potassium, so I ate a orange and banana a day.
I developed a hump in my back and other places.
I sweat so much on the pred that I have to carry around a washcloth at work just to wipe my face. I am not exagerating--the sweat RUNS out of me. It's diagusting!
Hey Duane, know the feeling. there is nothing as lovely as speaking to a client and first feeling the lip dew form, then the sides of the nose go moist and finally the rivulets of sweat pouring off the temples. Then trying to invisibally dry off the sweat. I just keep going as if nothing happened.
Jolanta
I'm doing alright. I did spend a week in the hospital over Easter though. I had been tapering off the pred from the original 50mg a year ago and was down to 10 mg pred and 15 mg mtx when I started getting sick. The good news is that the wegs IS in remission. All my bloodwork and markers came back excellent and had none of the wegs symptoms. It was my Ulcerative Colitis/Crohns Disease that came OUT of remission after 13 years. So now they have increased the pred up tp 60 mg and the mtx to 25 mg. Now also having problems with my knee (ligament problems from the pred) so am having an MRI done today to see how much damage is done with that. I feel like a snowball that is just getting bigger and bigger (actually 65 lbs bigger than a year ago!) and rolling out of control. But, I trust my team of docs here at Mayo and know that things will get better. I have also purchased TWO of the "Body by Prednisone" shirts that Doug had come up with on Zazzle.com and have had sooo many comments when I got to my appointments. THe doctors, nurses, other patients all think it is one of the best shirts they have seen! You have to try to keep a positive attitude about things though it is difficult at times. I hope everyone else in this wonderful group is doing good. I haven't been on in a while so I've been out of touch. Talk soon.
I forgot you have UC to deal with too. I sure hope they get it under control quickly. Have you ever sought holistic help for it? There's a lot they can do that won't interfere with Wegs treatment and might keep you lower on the dreaded pred. A naturopathic physician (ND) would be the best.
The sweat rag is like taking the keys out the door. hand in hand. I worked one firemens breakfast to help the boyscouts and everyone was very concerned about me. My prim doc was there and didnt say anything but " it is a workout ? isn't it?" My reply was anything seems to make me sweat so......... The hump is no fun and the white fuze I use the clippers on now. It grows more than my 14 year olds fuzz stash.
I am glad that everyone is getting a bit better than the winter. It did seem rough for everyone.
Hey, Duane! Thanks for your contribution to Vasculitis Foundation! I happen to be sitting in my "Body By Prednisone" t-shirt at this very moment. I wondered who bought those t's. Zazzle has a strange way of handling purchases. They let you know of individual purchases by e-mail, but the exact amount of the "profit" (in this case, the contribution to VF) isn't known until you reach a certain dollar amount. I've decided the easiest way to handle it is just send a check to VF, hoping I didn't short them. Another thing, Zazzle lumps all profit/contribution funds into one lump, so that makes it difficult to keep things separate.
Oh yes, sweat! I'm not on Prednisone any longer (last time I was was April 2005), but I still have the sweat issue. Perhaps it is a result of damage done to the vascular system (or brain!?) by all of the high fevers up till diagnosis (roughly 10 months from onset to diagnosis, a period during which I frequently woke up in clothes and bedding so wet I had to change out both to get back to sleep. Even now, little exertion results in big sweat. It bothers me alot, and has affected my willingness to do things in public if there is some likelihood I'll be drenched in sweat for the greater part of the time I'm in public.
Last edited by Doug; 05-06-2010 at 01:49 AM.
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