How to Beat Some of Pred's Side Effects

[Sangye]

When I was first dx'ed in 2006, I was started on "pulse" steroids--1,000 mg IV solumedrol (equiv 1,560 mg oral pred) for 3 days. It was dropped to 60mg from there and gradually tapered off within about 8 months. I gained 40lbs in 4 months, was constantly soaked in sweat, constant hot flashes, had an unstoppable appetite (especially for salt, fat, dairy and heavy foods), alternated between rage and depression, couldn't sleep at all, had difficulty concentrating due to racing thoughts and retained enormous amounts of fluid. Typical list for someone on high-dose pred.

If you can believe it, my original local docs never told me about a single one of these side-effects. As a chiropractor (a physician not trained in drugs), I only knew pred would give me a moon face, make my tendons/ligaments more susceptible to injury, cause bone loss and damage my adrenals. None of my patients had been on high-dose steroids or I would have known more. I also had no internet access to support groups or google for the first 2.5 years after dx.

Once I was discharged on 60 mg pred, I noticed a huge increase in my appetite but thought it was because I was so depleted from the prolonged lung hemorrhaging and being on chemo, etc.... I thought it was like how cancer patients have to eat so much to keep up with chemo. So I ate what I craved, thinking I was feeding my body what it needed. It had always been accurate before.

The weight gain was unbearable and fast. Even when I asked my docs about what was happening to me, they dismissed it and told me I was overreacting. My leg literally burst open due to fluid retention and they still said it was all in my head. I've borne a considerable amount of resentment these 4 years about it, always wondering what it might have been like if I had just been informed. And maybe I wouldn't still have all that weight and another 20 lbs. I bet some of you can relate to being totally in the dark about these changes.

I never had the chance for a do-over (and was terrified to need one, of course), until now. But I've been back on high-doses the past 2 weeks and it's a different world because of what I now know. We can't beat all the side effects, no way. But I'm surprised at how much we can. I'm going to use this thread to list what I'm doing to get through this. It's working. And it ain't rocket science.