Looking for help

[danaeok]

After finally being told that I have pyoderma gangrenosum following breast surgery the obvious cause was found thankfully not to be crohns or for that matter anything else that they could find. I am being treated with prednisilone and imuran and the ulcerations seem to be surpressed. The condition did flare the first time we dropped the prednisilone back to 15mg but settled fairly quickly when we took the level back up. Am now tapering down much more slowly but the side effects of these drugs are really effecting me badly. It is like being on a roller coaster emotionally with the highs and then the lows. The doctors tell me that my conditions is caused by a compromised immume system as is yours and being that we seem to be on similar drug therapy I am hoping that someone may have some thoughts and some tips. I have had no luck in finding any support group for the pyoderma of the breast as it appears to be so rare that they don't have one.

Any help would be appreciated ....danaeok

 

[Crohn's 35]

Hi Danaeok, PG is not very common and never heard of it in the Breast area. Most places are in the shin area or ankles. I had a very small amount on my shins but luckily went away. There are some posts here about PG and I agree Prednisone is a bad drug as most of us have the experience. Comprimised immune systems can get alot of bad symptoms such as PG. I do know of my CCFC ex prez had a very bad case. I am sorry I am not much help, but seeing a dermatologist who specializes it can help, which is rare, of course. I will see what I can find. You are most welcome here, hope you get relief. Take care.

This was all I could find that could help you..read some of these posts, hope it helps.
http://www.crohnsforum.com/showthread.php?t=14004&highlight=pyoderma

 

[danaeok]

Thanks

Many thanks for your quick reply. I am sitting here feeling so isolated, licking at my mouth ulcers and not wanting to go to bed in fear of being jolted out of sleep by the usual nightmares. They seem to crank up ever time I change the dose of the prednisilone. I sometimes want to just stop taking it all but know you just can't do that. The imuran caused me so much reflux that I could not eat at all and lost 16kg (48lb) in 3 months. Eventually settled down and I started to eat again. Has flared up again in the last few weeks even though I have not changed the dose on that one.

I have been so focused on stopping this thing in its tracks that I have in a way blocked out the terrible disfiguring of my breasts with the thoughts that there would be reconstructive surgery and in my mind somehow I was in time going to be alright. The problem is that the doctors do not really know themselves and now think that my imune system will not be up for it until I get the pred. down to 0 for at least 3 months with no flare ups.

I tried to conect with a support group for breast cancer survivors thinking that women who have has mastectomy's might be able to give me some council but was rejected as I did not have cancer. This is the first chat forum that I have ever been on so do not really know much about how it works but I really do appreciate your welcoming thoughts.

 

[David]

Greetings and welcome

You're welcome HERE even though you don't have IBD.

I'm a little confused though, WHERE is the PG located on your body?

 

[xJillx]

Hi and welcome. Pred can have some nasty side effects, hence why they can only be used short term. I have not taken oral steroid, but I do take cortisone enemas when I am flaring. Even these (though only 10% is absorbed) have caused me issues with water retention and sleeping. But I have read many stories on the forum of complaints with the emotional side effects of pred. Some forum members sometimes take antidepressants while on pred to counter act the side effects.

I sure hope you can soon wean off successfully!