Struggling with Pred Mood Swings

[renidrag]

Daggar: I am in drug free remission except for COPD and have been since June 2010. I keep up with blood and urine samples bi-monthly now. I do still take anti-anxiety med. Diagnosed in 09 but suffered without knowing for at least two to three years. So yes drug free remission happens, but you still think every day if that little pain is a flare.
Dale

[Sangye]

Daggar, I don't remember if I mentioned this before but a few months ago I was asking Dr Seo some questions about kids with Wegs. He said it's much harder to get Wegs under control in kids, and they have to use much higher doses of pred to do it. This should help settle your mind about Holly's high pred doses.

The 35mg is normal, but the additional monthly 1g (pulse steroids) is not. In adults, pulse steroids are only used for severe disease activity (eg, to stop lung hemorrhage). I can't imagine how hard it must be on Holly to get 1g a month on top of the 35 mg daily. I had pulse steroids for 3 days in a row when I began treatment. It's horrific!

Kudos to you, Holly for toughing it out. What an amazing kid you must be.

[Daggar]

Daggar: I am in drug free remission except for COPD and have been since June 2010

Hey Dale--It's nice to hear you're in "drug free remission".... coming up on a year now! Which drug cocktail did they use on you for initial treatment?

[Daggar]

Kudos to you, Holly for toughing it out. What an amazing kid you must be.

I try to tell her that every day...

[Palmyra]

Yes, to the end of your message. I can sooo... relate. So here is to empowerment for both of us. Confidence and the ability to act. The worst that can happen is that we learn from a mistake. I don't think of our sensitivity as a negitive...just something we need to recognize before we act. It is much like someone that is quick to judgement, only in reverse. You are mature for your years....and just the same age as my daughter! My daughter was diagnosed with Crohn's at 14...(so much like Holly) and Weg at 20. You ladies have much on the go...very smart.

~cheers

[drz]

We all know prednisone can cause mood swings and anxiety. Having a chronic disease that is unpredictable and always potentially dangerous and threatening also causes anxiety. We worry about our symptoms and our treatment which is natural. Learning to deal with all this is a great balancing act. Feelings of anger and impatience are likely. The key is learning how to manage our feelings and how to express them so we do not take them out on people who don't deserve them. Many of us here have a found a good therapist helpful in this regard. Sometimes some meds to reduce our anxiety or depress ion is also helpful. And posting a rant here or private message to another member are also good options. These are issues that are difficult for adults who have been or are professional care givers, so if you can handle it as teen with the extra burden of raging hormones and peer relationships, you are one remarkable young person we would all love to meet. thanks for being here and sharing!

[stikker]

I just wrote this long rant about how miserable I am and decided that it was too negative to post. I am very depressed. I will be seeing my primary care dr tommorrow. I hope she has a magic pill. I think I will request that she refer me to counseling. I never tried it. Maybe it will help. It can't hurt.

[Sangye]

Oh Stikker, please don't worry about being "negative"! It's most important to be honest about your feelings than to paste a fake smile on and pretend everything is fine. I also encourage you to see a psychiatrist before starting any meds for depression. There are too many complications, especially with our other treatments and pred usage. I think it's a great idea to start counseling. Hang in there and be kind to yourself. It can be hard to do that when you're depressed.

[Geoff]

I agree totally with Sangye's posting. I count myself very fortunate to have a very understanding family, and on top of that I had the good fortune to meet up with a very good counsellor who addressed the depression/ anger and mood swings that had crept into my life. There are so many facets to this illness which we have to confront, which is another good reason for being on this forum and within our extended family. Good luck Stikker!!

[Jack]

Never be afraid to post anything here, you'll only get good advice or sympathy in return.

We are probably all running a bit near to the edge. As an example, I was trying to wrap my daughter's birthday present yesterday - a heavy record player (she is currently into vinyl discs!), but I could not manage to do it due to my lack of strength and movement. My reaction was to break down in tears! Not my usual style and I was over it after a couple of minutes, but an indicator of my true mental state.