Monday, November 15, 2010

Uh Oh

3mg isn't feeling so hot.

I'm going to try and stick it out as long as I can, although I can see how that may not be wise.

But I am determined to get off prednisone.

If I can.

I did exercise last night. It was fine. I would like to do it again tonight.

Today though is the fatigue and the nausea and all the other crap. Not sure if it was the exercise or all the errands I did this morning or both. It can't be withdrawal in the sense that I bumped up the dose, and, by definition, withdrawal is when you cut the dose. So my guess is I'm just not making enough cortisol for whatever reason.

All I know is suddenly I can't eat--the toddler is actually finishing up my soup as I type--and my energy is in the toilet.

Sigh. Will this ever end? Ever?

7 comments:

  1. You're probably getting sick of my comments, I'll try to be brief!

    Short answer? Probably not. Unless they find a cure. I understand your desperation to stop taking them, steroids are horrible. :(

    If this were me, I'd go up to 5mg for a few days then start tapering again.

    My disease is forever and coming off the steroids too soon makes my immune system start shutting down my organs again. So I am willing to stay on them [over three years now]. Not to say I don't want to get off them, I do! But not enough to be willing to risk my overall health. I am functioning reasonably well with my 2mg. I'm hoping to try going down to one next summer.

    If, hypothetically, your cortisol production doesn't wake up again is there an alternative to pred?

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  2. Just throwing this out there, I have no idea where you live, but when I called a certain hospital the other day for a cardiopulmonary exercise test (my pulmo was rather surprised in a not good way when I actually told him how much ventolin I used when I did a 5K last month, so he's sending me for this test, as we haven't done it... hopefully it will show something so I can get out of the "but you don't have asthma!" curse), one of the hold messages (they actually had interesting hold music mixed with information about the hospital) was about how that hospital was one of the top centers for endocrinology. You can send me an email if you want to know what hospital it was.

    Dealing with doctor's who don't know what to do with you is frustrating, and then having to deal with figuring out how to treat it when they are clueless or don't seem to care.... or want to care, but don't think there's anything more they can do to help you, even though you know they can be doing more.

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  3. Hey Ezekiel---Always good to read your comments, no worries. I may end up doing just as you've suggested.

    MC--I would be interested to know which system it was just out of curiousity. The thing with endo, is they actually need to have someone on staff who does adrenals. But I think adrenal problems are 'rare' enough that it's not a money maker. So you don't get a ton of docs.

    I've been on the Mayo site, all their endos do is thryoid and diabetes. Nary a mention of adrenal glands in their info. Hopkins has a specialist. Some of the world class systems in my area pay lip service to adrenal care, but don't actually do much at least not when I'm their patient.

    It's funny when you go on a world class medical system website and they don't have adrenal insufficiency or secondary adrenal insufficiency listed at all in their diagnosis database. I believe a few don't even list Addison's.

    Basically, as far as I can tell, my medical karma sucks.

    M

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  4. I think you're trying to taper too fast. I know most docs say to drop every two weeks, but for some of us it appears we are much, much more sensitive to the drops and the side effects of tapering make it soooooo hard to get through the days. I really think you need to stay at each dose longer and also go down by smaller amounts than 1 mg. Also, I've read that if you use your rescue inhaler more than twice a week, your asthma is not well controlled.

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  5. Mayo's endos in Minnesota do adrenals just fine in person - we've seen them for secondary adrenal suppression among other things. In fact, Mayo has one of (if not the) top experts in the world in adrenal tumors.

    Anyway, here's a good source on secondary adrenal insufficiency:

    http://www.merckmanuals.com/professional/sec12/ch153/ch153c.html

    Why aren't they using hydrocortisone instead of prednisone? It suppresses the adrenals much less than prednisone. I understand you need the pred for the asthma exacerbations, but once that's over they could switch to hydrocortisone to try to get the adrenals to wake up.

    I believe 5mg of prednisone is a physiologic dose (i.e. replaces what your body would make if it worked properly. 15mg is the usual hydrocortisone physiologic dose. (typing this before coffee, so not 100% sure of the numbers, but about 99% sure)

    Tracy

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  6. I'm certainly not pushing the Mayo Clinic because I have no experience there, but I went to their endocrine site and looked at the doctor's profiles http://www.mayoclinic.org/endocrinology-rst/doctors.html There are some with adrenal function/dysfunction listed under "interests" and in their list of publications. E.g., this guy: http://www.mayoclinic.org/bio/10024956.html

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  7. Here's their list of docs in the department... not sure exactly their specialty, but I thought I'd throw it out there and let you dig deeper as you know better what kind of doc you need. http://www.whcenter.org/aspframe.cfm?id=555712

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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/