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.

[Jack]

Looking forward to your posts Sangye.
I've had weight gain, weight loss (muscle wastage), cataracts, osteoporosis, thin skin, darkened skin, sweating, moon face, joint pain and mood swings. Probably a load of other stuff too, but at least I'm still here. I'm not sure that I could have done much about any of these.

Edit: and of course, my adrenals will never work properly again.

[misskay]

oh boy... can I relate. I gained 6 pounds in 6 days on 60mg daily of Pred. I'm just starting to get puffy faced though. The sweats!!! OMG, cannot stand it. Feels as though I'm burning from the inside out. And the mood swings. I've told my husband that if something is actually wrong I'll tell him, but until then to just ignore the crazy lady in the corner who may burst into tears for no apparent reason.

Luckily my doc has warned me about the weight gain, but says until I'm back to my original (pre-sick) weight not to stress too much about it, but when I crave something to try to go for carrot sticks or something as often as possible. Not sure how I'll do trying to 'diet' while on the Pred, I've always been very thin and been able to eat whatever I wanted with no worries. I'm 5' 8" and pre sick weight was 130. (was at 104 2 weeks ago) So now that I may have to actually watch what I eat and be conscious of my caloric intake... yikes!

[Sangye]

Luckily my doc has warned me about the weight gain, but says until I'm back to my original (pre-sick) weight not to stress too much about it, but when I crave something to try to go for carrot sticks or something as often as possible.

Unfortunately, that weight gain will all be fat. Pred destroys muscle and causes fat to be added. S/he is right about the carrots, though.

[Jack]

oh boy... can I relate. I gained 6 pounds in 6 days on 60mg daily of Pred.

That sort of weight gain is fluid retention rather than fat. This can be caused by steroids, but you should also be having your kidney function monitored. If you are retaining too much fluid, you may need something like Furosemide to sort it.

[Sangye]

The key is realizing that pred causes imbalances in certain elements that make up the body.

(If you're not familiar with such things, I did a thread about Ayurveda that has links to easy, background info. http://www.wegeners-granulomatosis.c...-ayurveda.html )

Basically our bodies are made of 5 different elements-- air, fire, water, earth and space. To use this info about pred, you really only need to know about Fire and Earth/Water and I'll explain what you need to do.

The two major imbalances that pred causes are:
1) Increase in the Fire element (Pitta) and
2) Increase in the Earth/Water element (Kapha).

Signs of excessive Fire (Pitta):
anger, impatience, frustration, short temper, voracious appetite, fluid retention, sweats, hot flashes and insomnia.

Signs of excessive Earth/Water (Kapha):
fluid retention, weight gain, depression, desire for heavy foods, desire to eat often

Doesn't that sound just like pred?

If you pacify excess Pitta while on pred you get:
calmer mind, ability to cope, patience, normal appetite, greatly reduced sweats, normal fluid retention, minimal hot flashes, sound sleep.

If you pacify excess Kapha while on pred you get:
normal fluid retention, minimal weight gain (if any), only hungry at mealtimes.

(Note: Both Pitta and Kapha excess will cause fluid retention.)

Okay. Just sit with that info for a bit and I'll be back on to explain what the heck to do with it.

[Jack]

Its like being at school isn't it?

[drz]

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.

As Garfield said "I can resemble your comments". The doctors have generally acknowledge these symptoms when i ask about them, well most of them. One physician tries to blame my symptoms from RX with Prednisone and Cytoxan on my worrying excessively which he thinks causes me stress.