How to Beat Some of Pred's Side Effects

[Jack]

Everybody put the snacks away and sit down, she'll be back soon and then we'll all be in trouble.

(sorry Sangye, I know this is a really serious subject, we just can't help it sometimes)

[Sangye]

Jack and me2-- Absolutely hilarious. Now, where's my ruler?

[Sangye]

(sorry Sangye, I know this is a really serious subject, we just can't help it sometimes)

It's not that serious-- we can get some good giggles out of it. As you were.

[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.

[LisaMarie]

i use a milk dod and cheww a long time...i hate pred

[LisaMarie]

seriously though i greatly apprexiatw any help or advise with pred and weight gain ..funny at times i am soo hungry and at others can not stand to eat...try ro snack on health stuff or stuff i have to chew for a long long long time...like celery or a milk duds but only one at a time lol....i hate the fat pad distributation and the water retention ...on 60 mg of pred now for a week no moon face yet...yeah...hopefully it will not come....thanks for all ya a do

[elephant]

Just get some light exercise and not overdue it. Allow yourself something good to eat everyday, if you continue to resist then you end up eating a whole chocolate cake! I was on and off 60 of prednisone for a couple of years...and I ate three meals within three hours. I wrote it down and called my sister and said," guess what I just did?" She laughed when I told her how much I ate, but she was not judgemental...she new that I was having a hard time controlling my intake of food particles!

[Jack]

Where has the teacher gone?
I bet she's in the Staff Room filling up on cigarettes and coffee!

[Lightwarrior]

Where has the teacher gone?
I bet she's in the Staff Room filling up on cigarettes and coffee!

Or reinforcing her ruler lol. Poor Sangye, how did she get all of the troublemakers in one class??

[Sangye]

Okay, sit down you naughty kids.

I'm assuming everyone has thoroughly digested the info I already posted. I bet some of you are just waiting for me to list what to eat or not eat, but you've really got to understand the mechanics of the Fire and Earth/Water thing or you won't be able to make it work.

And it works, I can tell you that. I've lost 7 lbs in the last 2 weeks on 40-60mg pred (one week on each). I've hardly had any sweats, have slept soundly, have felt cheerful and hopeful, haven't swelled up, didn't get a moon face, my abdomen fat actually decreased, and I haven't had an increased appetite or any food cravings.

(For those who don't know, ever since the first course of pred in 2006 I've been extremely sensitive to it. Before this little experiment, even 5 mg gave me a moon face and all the other symptoms.)

Here's what I did:
1) I followed Ayurvedic principles (diet, lifestyle changes) that pacify both Fire and Earth/Water
I especially emphasized Fire reduction. I'll talk specifics later.

2) I eliminated all processed foods.
I had already been doing this for a few weeks, so that was a plus. (Processed = canned foods, pre-mixed things (eg rice mixes), pasta, etc....) I cooked like I used to-- real foods, my own spices, etc.... I did this while having ongoing vertigo and extreme weakness, a lousy refrigerator that kills fresh veggies in 3 days, no way to shop for myself and living on a very tight budget.

3) I eliminated all salty foods.
I added a very small amount of sea salt to one meal each day. I proved to myself that salt was a major culprit in the pred effects, because one day a friend treated me to Chinese food--full of salt. I kid you not, within 2 hours I got a moon face, swelled all over, was irritable all day, had major sweats all day and night and couldn't sleep that night. The next day I went back to no salt and it never happened again. Salt greatly increases both Fire and Earth/Water.

4) I didn't let myself even taste salty, dairy or sweet foods.
I had no desire for them, but on the 5th day a friend brought me some corn chips. While waiting for my dinner to cook I took a bite of one. I can't write WOW big enough. It lit up every pleasure center neuron in my brain, instantly. Like someone had given me a drug. I knew that if I ate another I wouldn't be able to stop. I got rid of them and never did it again. It was amazing to see that. If you are trying to eat healthier salty foods or just limit your salty snacks that's the trap. It'll keep you craving the salty foods, and it'll still make the pred side effects go wild.

Same with dairy and sweet foods. Pred stimulates the taste buds so if those foods hit your tongue, it's all over. The good thing is that if you avoid them for a day or two and follow the other guidelines, the cravings will disappear. Don't feed the stray cat and it won't keep coming back.

5) I took 40mg Lasix (furosemide) in the morning and evening.
Lasix is a common diuretic. It helps pull off some of the fluid retention with pred. Obviously talk this over with your doc. If you just take lasix but don't follow the other guidelines, it won't do much. The diet/ lifestyle stuff greatly outweighs what lasix can do. I was already on lasix to control lower extremity edema (from blood clots). Lasix depletes potassium so you need to know how to stay on top of that if you take it.

Okay. I know some of you are thinking exactly what I would have been if someone had posted this list a few months ago: "No way." or "I can't possibly do that." or "I can't white-knuckle the food cravings" or "Wegs has taken everything from me, and now you want me to give up my cookies?"

I might have even been nasty about it if someone had suggested all this to me! But I'm hoping that at least some of you will give it a try. I haven't had to use any will-power at all, I promise. And not having those hellish pred side effects has been amazing. Talk about quality of life.

I'll post next about the specifics of the Ayurvedic diet and lifestyle changes.