Prednisone questions

[linda1226]

A couple prednisone questions, I am on 40mg a day (2 @ 20mg)

I only have taken this once before and it was a 6 day course of Medrol @ 4mg, at the time I remember thinking it was awful and I would never go on it again, oh my that was nothing!

side effects I am having is nausea and diarrhea (but is that from the cyclophosphamide?) I started taking these pills with milk and a banana. I am NOT a morning person and definitely not a breakfast person so having to get up early and put something in my stomach is really difficult. Thoughts on making this easier?

I am not sleeping at all, last night I laid awake for hours! I tried reading some but my mind just kept racing. Hubby is a light sleeper so I just tried to lay there and not bother him, but I may need to try something else.

I have been getting really bloated in the evenings, like a balloon being inflated in my belly. I am trying not too eat too much, but oh my goodness,, insatiable appetite! I've been trying to go more healthy by eating more fruits and veggies, so maybe that is contributing to the bloating, my system is not used to that much fiber.

The other thing is blood sugar levels. Several times I have felt so shaky and almost passing out. Is that too high or too low blood sugar? As I said I am trying to eat more healthy and trying to get enough protein in my diet and not eating things like sweets or processed foods. I have been on a low salt diet for 4 years, so I don't generally eat things like chips or salty snacks, but I'm wondering if with all this fluid I am drinking if my levels my be off some? and would that contribute to being so shaky?

I go for my 1st followup labs tomorrow and see the dr on Mon so will definitely ask these questions..

I went through menopause several years ago and with that all the night sweats, hot flashes etc. I thought I was over that until I started on Prednisone. Waking up in the middle of the night (after finally getting to sleep) drenched in sweat I am normally a hot weather loving person, but just thinking about going outside in this heat makes me sweat. Does this stay the whole course of the drug or does it eventually go away as my system reacts?

Dr said best case scenario is 6-8 weeks and I have done 2 already, I can do this right?

Linda

[Pete]

Ah, the Devil’s tic tacs. You’re doing mostly good things while on pred. Diet wise, you may want to start eating breakfast to keep your blood sugar levels more constant. The shakes you’re experiencing sound like hypoglycemia to me.

You’ll probably gain weight. I regained the 25 I lost at disease onset plus another 20. A side effect is Cushing’s syndrome. It’s characterized by either a moon face or a buffalo hump. I hope that doesn’t happen to you.

I had night sweats (sometimes two or three a night) before I was diagnosed. They went away once I started treatment and never returned.

You may want to get some exercise to burn off some of the extra calories and maintain fitness. I gradually worked up to walking 2-3 miles 4-5 times a week. Now, I play a little (bad) golf and do my own lawn maintenance. During the winter, I swim once or twice a week at the Y.

Now, for the good news. It is possible to lead a near normal life with wegs. It may take awhile — took me about 18 months to feel consistently healthy and act like it.

Good luck!!!

[MikeG-2012]

Kudos to Pete for already mentioning a lot of what I would say.

You might want to pick up a copy of Coping with Prednisone (https://www.amazon.com/Coping-Prednisone-Revised-Updated-Cortisone-Related/dp/0312375603/ref=sr_1_1?ie=UTF8&qid=1530221332&sr=8-1&keywords=coping+with+prednisone) It is a really good read for people taking the dreaded prednisone.

I did switch to a better meal for breakfast after diagnosis. Today, it is still a bigger meal for me than my lunch.

You may want to ask your doctor if you could be referred to a nutritionist. That helped me greatly to know what calories were giving me energy, what was adding to my fat, and not just filling my stomach so I felt full--and there is a difference.

Lastly, I learned to not drink sugary drinks with High Fructose Corn Syrup. Everything I read about HFCS said it is bad for your system, is artificial and a person's body is not able to process it naturally, and all of it goes directly to fat. If I do pick up something sweet to drink, I stick with something that has real sugar.

Good luck, and hang in there. It does get better over time. I've been off pred for over 4 years now and have been doing very well with regular RTX infusions (every 6 months).

Keep a positive attitude, and above all try to laugh as often as you can. Staying positive is horribly hard, but it will benefit you in the long haul that is GPA/Wegs.

[seied]

Please make sure that you don't have a deficit of vitamin D, that you are taking in at least 100% of calcium dose every day, that you're prescribed enough alendronate a week, and that you're also taking Nexium everyday to protect your stomach.

Ed.

[Masha]

Hi Linda,
Welcome, and yes you can do this. I have never heard of anyone who likes prednisone, so all that you are feeling goes with the territory. I am a 68 year old female, and even now vanity is still present. My face looks like a balloon and my stomach like a beach ball. I have been on this drug for a year and a half, but I will not allow myself to go over the edge and buy bigger clothes, just a waistband extender. On my infusion days my medical cocktail has 100 mg of prednisone and I could come home and paint the house, then eat the contents of my pantry. Some days when I just have fish and vegetables I feel so saintly that I can almost hear the pope canonize me. Two days ago I walked into the grocery store, saw a coconut custard pie and said the hell with this and bought it. I stand not alone, another person on this site even posted pictures of pie.
Yes, my mind races. I try to read to fall asleep. Last week, my mind raced so fast I thought I should write my own book. So, as I lie sleepless, I wrote that book in my mind for seven nights. Now if only I could find a mind reading publisher on prednisone.
My husband and our dogs have all converted to my time schedule. The dogs think playtime starts at 1 in the morning.
My doctor warned me about the night sweats and nightmares. Sometimes I wake up so mad at my poor husband. He is 75 years old, and he can’t believe the trouble he gets into in my dreams.
Keep protein handy for that sugar drop in the afternoon. I don’t mean like a steak, just a piece of cheese will do it, ok, maybe some Brie covered in berries with crackers, oops there I go with those food fantasies....
Masha

[gilders]

You have my full sympathy while taking prednisone. Listen to the various advice given and see what helps you. But be prepared for the fact it's going to be tough while you're on high doses. I find the side effects are more manageable once you drop to 5mg/day.
Try to be strict on your diet and don't let any weight gain or moon face make you think you've lost the battle and get tempted to think I may as well eat what I want as I'm getting fat even on healthy diet. If you stick to healthy eating you'll lose weight a lot quicker as you reduce steroids as it will be water retention, rather than fat you're storing.

[linda1226]

Thanks all for the advice! I got my fitbit back out and charged up and am back to trying to up my steps every day, it has a reminder to move every hour and I'm hoping that the extra exercise will help some with the sleep issues. I'm eating breakfast now consisting of more protein, no sugary cereal! I think I get quite a bit of calcium but I will ask the dr about the alendronate. Plus I'm taking ranitidine (Zantac) for my stomach.

[Alias]

I thought the alendronate or equivalent went hand in hand with prednisone use, or at least that's what I was told when I was on pred.

The sleep issues and voracious appetite are hard to get past on those higher doses, so don't beat yourself up about it or worry too much. You need the drug to calm the flames, so you just have to get through it. Once you start to taper, those issues will go away. When I was diagnosed, I was started on 60mg per day. Sleep was quite elusive, partly because of pred and partly because of my upper respiratory symptoms. While I was awake for most of the night during those months I made myself some very creative snacks out of whatever was in the fridge, and definitely put on some weight. I found things got much easier to manage once I was below 20mg. And I did get to zero with no big problems.

[seied]

High-dose prednisone without Alendronate, Vitamin D2/D3, and calcium you'll end up with osteoporosis.

[Alysia]

I admit I LOVE my pred. I never had insomnia or weight gain with it. At WG onset I was 5 months on 60mg and then reduced gradually. I am on pred since 2008 mostly on 5mg but during flares on 30-20-10mg or so. Whenever I tried to go under 5mg I got severe headaches so I am not trying anymore. It's for life.

So I guess I am not the right person to give you advices about handling your pred issues.

Just few tips: moon face will start to disapear when you will start less then 20mg pred.
Take it with good breakfast and with omperadex/ losec to protect the stomach.
Diarrhea is not the result of pred. Prob the result of ctx.
Make a journal of what you eat and see what foods are making you feel better. Since I have, in addition to WG, also collagenous colitis, I have learned that "healthy food" is different from person to person. My advice is to abstain from milk.

Last one - not pred related - if you continue to have diarrhea maybe your dr. needs to consider giving you rituximab instead of ctx.

[richard052018]

If I was to give you some advice it would be as follows:

--Have your primary care prescribe you a Blood Sugar monitor. Test daily. Pred induced diabetes can hit any of us.
--Go see your eye doctor and have your ocular pressure checked. Mine is high, most likely due to the Pred(ator). Hoping it doesn't turn into Glaucoma.
--Benadryl gets me to sleep at night when all else fails and I really gotta sleep.

Best of luck!!

[linda1226]

Thanks for all the responses and advice. I get to start my taper next Monday dropping to 30mg per day for a week then then down to 20Mg per day after another week. Then I will retest labs and followup with dr once again to check progress.

I haven't noticed a "moon face" yet, but I definitely have a moon belly! I can't even button my fat girl jeans :ohmy: I gained 4 lbs in 3 weeks and it is all in my belly!

I am trying to walk more to help with the weight gain and possibly help my sleep better. But hopefully the reduction will help the most!

Thanks again!