Thursday, April 29, 2010

What I Wish Doctors Had Told Me About Steroid Withdrawal

1.That it happens. I know I'm behind the times. I seriously did not Google asthma hardly ever because it was a non-issue. My meds worked. I hadn't had a serious flare up in a long time, so who cared? Well, here I am finding out everything I never knew about asthma and prednisone.

It would've been nice to hear this from my doctor.

Of course, I have a sneaking suspicion that not many asthmatics have this kind of withdrawal. The 5 day burst is so common, how many asthma patients really end up taking prednisone for 30+ days and how many of those go on to have serious withdrawal symptoms?

My guess is not many simply because I'm treated like an over-functioning worrywart whenever I bring up any concerns, but I'm not over-functioning. Prednisone does weird shit to me. Maybe I wouldn't so hyper about it if someone would actually listen to what I was saying and look at how I went through a year of adrenal suppression with just medium term Prednisone use--similar to this latest episode.

I. am. not. making. this. up. There is a medical history there. Look at it. Please let's not repeat it.

2.What to do about it. I would've appreciated instructions on how to manage the pain and side effects. I don't like guessing or making things up on my own. Some self-care/home-care instructions would've been a huge help. Please tell me how to help myself--if I have a plan, I'm less likely to call and interrupt your day.

3.When is it an emergency? It would've been nice to have a run down of what constitutes an emergency during steroid withdrawal. Also, it may have made my ER trip a bit easier if I'd been aware of steroid withdrawal and been able to communicate that to the ER. I mean, I did ask about the steroids, however, with just a bit more information, I could've not only connected the dots myself, but helped them connect it all as well. Maybe I could've avoided the ER altogether.

4.What to do if I get sick. Everything I've read indicates additional steroids may be necessary during illness. I can see why--the stomach flu was brutal. Please tell me what to do. Should I call you when I get sick? At what point? Please tell me how we're going to work together to manage this.

5.Tell me the asthma can flare up during withdrawal and how you want me to manage it. This was really worrisome for me until I realized it was normal. Typically, I have a 5 day burst of prednisone on hand at all times to use at my discretion during flare ups, imagine if I had started that?

I would have been totally justified doing a 5 day burst too, as peak flows have dropped into the 350 range, which is baaaaad.

So don't leave me to my own devices, I might do something stupid. The asthma action plan has to be modified for the withdrawal period so oral steroids are avoided while also controlling flare up symptoms. I need you to tell me how we're going to manage this.

6.Tell me I may not feel well and may need more rest. Backsliding and going from lots of exercise and normal activity to zero was frightening. I lost all the ground I had gained and am now starting over. Again. This sucks. A heads up would've been nice, not to mention a kindness.

Right now I'm upset. I feel as if I was left to flounder and muddle through without any guidance.

Not cool.

Doctors don't like patients who Google, but, all too often, the patients have no other choice. It's not like their doctors are giving them good information.

1 comment:

  1. "Doctors don't like patients who Google, but, all too often, the patients have no other choice."

    Oh, how i can relate to this! I've been called a hypochondriac so often by my old therapists, psychiatrists, but more than anyone... my own mother.

    She always refused to believe something was really wrong, when something really WAS wrong! So, she left me to google it out also. Which is how I've managed pretty much all my illnesses since I've had the internet. At least up until the past year and a half - two years when I actually began being able to go to the doctors!

    I always google everything I am diagnosed with and I google / web-md every medication I am ever given because to me a well informed patient is the best patient simply because, you are right, doctors don't like to tell you all the details. Esp. the gory ones! And they leave us to wonder wtf is going on! But you just can't let them know that you google. You just have to "suggest" that you may "think" this could be a "possible" reason for whatever is going on.

    I hope things are starting to look upwards for you! =)

    -Kayla

    ReplyDelete

Thanks for your comment. I read all comments and do my best to respond to questions, usually in a new post.

If you have adrenal issues and want to connect with other patients the following message boards are wonderful resources:

http://www.mdjunction.com/forums/adrenal-insufficiency-discussions/general-support

http://www.addisonssupport.com/