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View Full Version : Prednisone--What a Difference 0.5 mg Makes



Sangye
01-19-2010, 02:29 PM
I've been on 4 mg pred for the past several months. A couple weeks ago, I started tapering it. The plan was to taper 1mg/ month until I was off. My doc said I could go slower than that, but not faster.

I decided to begin by going to 3.5 mg. I couldn't believe how much more energy I had for the first week. However, Wegs symptoms were creeping in-- nothing major, just noticeable. By the end of the 2nd week I conceded that the symptoms were past my safety level. I went back up to 4 mg last week. That day I was incredibly exhausted and depressed. That continued for a couple more days.

I couldn't take it, so I decided to alternate days of 3.5 mg and 4 mg. I'm way better. The symptoms aren't firing up and I can function. I'm planning to stay at this level for at least 2 weeks.

I finally realized my body is so sensitized to pred (from prior massive doses) that each mg acts like 10. On 4mg I feel exactly how I felt on 40mg. Same facial swelling, etc... My JHU ENT agreed. It's amazing to think that 0.5 mg of pred can make such a difference.

pberggren1
01-19-2010, 03:13 PM
That is amazing Sangye. I'm sad to hear that just half a milligram of Pred can make such a difference. But if it means you can function from day to day then 4mg it is eod. I hope that at least you can feel half decent every day. I sent you a private message regarding my brother and Gout.

renidrag
01-19-2010, 08:16 PM
When you wean off Prednisone how slow should you go? I started at 80mgs in August 09 and am down to 5mgs today. I will stay here for another seven days and then go to 2.5mgs for two weeks. Then I am done. Is this a safe program?
Dale

Jack
01-19-2010, 09:53 PM
5 mg is where the problems tend to start (I can't even get that low). From 5mg down, I would only drop by 1mg every two weeks at most and keep a check on how you feel. Last time I tried to reduce from 10mg I dropped 0.5mg every two weeks, but after 3 months the problems were building up too much.

Sangye
01-20-2010, 03:29 AM
Dale, in addition to Jack's wisdom, Elephant posted a reply in the last few day (different thread) describing a good taper program in detail. When Andrew is back on, it'd be a good candidate for a Sticky.

TBulger
01-20-2010, 04:37 AM
I have been slowly weaning off of Prednisone for the past several months. I've been on for over a year with a high of 40mg per day. I've just dropped from 2mg to 1mg three days ago and I am really feeling it.

Sangye
01-20-2010, 05:48 AM
I assume you mean you're not feeling good after dropping it from 2 to 1 mg? Can you try 1/2 mg? Let your doctor know, though.

TBulger
01-20-2010, 11:03 AM
I have pain in both feet, knees and left arm. Since this is how my first experience with Wegs started, I'm beginning to wonder if it is the start of a flare. I've only been diagnosed a few months ago and am trying to figure the whole thing out. I'll drop in to see the doctor tomorrow.

elephant
01-20-2010, 11:24 AM
It could be a start of a Wegeners flare. Glad you see the doctor tomorrow and make sure you mention this is how you felt when the Wegs started. I wish you luck.

Sangye
01-20-2010, 03:22 PM
I second that. My symptoms of a flare are exactly the same as how it started in the first place. They progress the same way, too. That's not true for everyone, but any "original" symptoms should ring an alarm for you. The sooner you take care of it, the easier the treatment. (ie, you don't necessarily have to start all over again with the high doses)

berylj
01-21-2010, 07:14 AM
i had a clinic visit yesterday,ive been on 5mg pred for a while,( had a flareup) doc told me to reduce pred by taking half the dose alternate days
for 1 month, then continue with half dose until next clinic app in 3 mths, they like to reduce pred as slow as poss. i feel a bit panicky as last
year when i came off pred, within months i had a flare, i suppose i must keep trying! docs here dont like to keep patients on preds too long
but i am making sure i have some spare!
berylj

Jack
01-21-2010, 08:22 AM
It can never be a good thing to take steroids long term, but many of us Wegies are stuck with it as the lesser of the two evils. :(

elephant
01-21-2010, 08:33 AM
I have a feeling, I will be part of that lesser than the two evil program of prednisone.

Sangye
01-21-2010, 01:26 PM
Beryl, if you do alternate days of 5--2.5--5 and you get ANY increase in Wegs symptoms, you might try going even slower. (Check with your doc first, though) That's a big jump for someone who's been on pred for awhile. I've only been on 4mg for a few months (was on massive doses in 2006/7) but I notice a huge difference between 4mg and 3.5 mg!

coffeelover
01-21-2010, 01:34 PM
I have recently been told I am in remission. YEAH! But, still dropping the pred. so a bit nervous about possible flares? My rheumy told be to go down 2 and 1/2 every week until I am off it? Is this the best scenario do you suppose? I went from 10 to 7and 1/2 and today started on my week of 5.
So far,so good. But it has only been a week since the good news.
LIsa Coffeelover

Sangye
01-21-2010, 01:38 PM
Alright, I don't think alternating days of 4mg and 3.5mg is cutting it for me. Sort of maybe kinda. Yesterday was a 3.5mg day, and I woke up today with some joint pain. It passed pretty quickly, but I was glad to get 4mg in me. I'm giving it another 2 days. If it continues then I'll try 2 or 3 days at 4mg for every one at 3.5 mg. I think the occasional break of 3.5 mg will help reduce side effects.

Meanwhile, my EKG was normal today--no heart symptoms since. I'm doing a 3-week heart monitor, though, just to make sure everything is okay. A little pain in the neck, but better than, you know, death....

elephant
01-21-2010, 01:39 PM
That is great news. Yahoo! I personally think that it is too fast. Actually my Rheumy thought that was a good idea to decrease the prednisone 1 mg/month. I am on 5, but I might stay on it longer than a month. Starting at 10 mg of prednisone, just decrease down to 1 mg a month. I personally think that way you can monitor yourself if a flare is coming. If you go to fast, you could possible get a flare quickly. Everyone is different, maybe you won't have any of those issues. So do what is best for you.

elephant
01-21-2010, 01:43 PM
Sangye, glad your ECG went well. I wore those halter monitors and they are a pain. That prednisone has gotten most of us in a slump...trying to wean off it. Hope your plan works.

Sangye
01-21-2010, 01:44 PM
Lisa-- what great news!!! I agree with Elephant. My Wegs doc also said when you get to 5 mg, don't drop faster than 1 mg per month. Slower than that is okay, but not faster.

coffeelover
01-21-2010, 01:46 PM
Thanks Elephant
I am going possibly slow down more than she requested from the 5 mg phase. Your advice is good. btw-I was at a store the other day and saw some ceramic elephants that were beuatiful and immediately thought of you. Was going to take a pic with my phone and send it to you...but didn't/
SANGYE-So glad your EKG was normal. I have missed quite a few days and it is exhausting to try to catch up on everything, but I hope you are doing OK and glad your test came back normal. Normal is sooooo good.

pberggren1
01-21-2010, 04:30 PM
Oh Sangye! The dreaded Pred dilema! We want to get off of it yet we want to feel half decent so we stay on it. I feel sorry for people like Jack that have to be on Pred continuously in which case Jack is right about the meds catching up to him.

moyan
01-22-2010, 03:00 AM
I found a way to get along with pred: You can blame just about anything on it! Even tripping on plushmice in the dark. :)

Sangye
01-22-2010, 03:06 AM
I can deal with the symptoms I get when decreasing the pred. The only reason I'm staying on it is to keep the Wegs from flaring up so badly that we'd have to seriously increase the pred. I have to wait about 3 months for more rtx, so the only variable is pred.

GARYfromBOSTON
01-22-2010, 03:47 AM
I found a way to get along with pred: You can blame just about anything on it! Even tripping on plushmice in the dark. :)


moyan, that made me laugh :D

elephant
01-22-2010, 05:28 AM
Moyan, so true...when I was on prednisone over 20! Wow, I was a completely different human being....I blamed everything on the Prednisone and my family and friends were there to back me up on that one. Once in a while I still blame it on the prednisone.

Sangye
01-22-2010, 03:59 PM
Mood changes are a side effect of Pred :

http://icanhascheezburger.files.wordpress.com/2010/01/funny-pictures-cat-hates-outfit.jpg (http://www.wegeners-granulomatosis.com/forum/%3Ca%20href=)

elephant
01-22-2010, 10:24 PM
Sangye how did you get that picture of me? Heee, Heee, so funny!

TBulger
01-23-2010, 04:22 AM
The first question my employees ask when I return from the doctors office is "Did she increase your Prednisone?" - They know to stay away when the dose goes up.

Doug
01-23-2010, 11:32 AM
elephant and Sangye are right. I make it three who are glad you had a doctor's appointment the day after you posted. How did it go? Did he/she answer your questiona, have you get tests to establish one way or other where your WG is headed?

TBulger
01-24-2010, 02:07 AM
It is anther flare. Prednisone has been pushed to 10mg. Lots of tests being run.

Still new to all this, but it is very disappointing to do everything the docs say and have another flare. For the first time in my life I can appreciate those that have dealt with depression. This makes you feel so helpless at times.

Thanks for the support and concern.

Sangye
01-24-2010, 02:36 AM
I'm so sorry. I know exactly what you mean by doing everything right and it still goes wrong. I've never been in remission and I've followed their instructions to a tee. I've also experienced a fair amount of depression with it. Never had that before. You can feel helpless and hopeless about ever digging out of the hole.

Hang in there and keep posting. It does help to talk to others who understand.

Jack
01-24-2010, 03:44 AM
I've never had what I would consider to be depression and I seem to be fairly immune to the steroid mood swings even on high doses, but I know that I am living near the edge. I used to be such a positive and strong person who could take on board others problems if called upon and also deal with anything that life threw at me. I now try to remain positive, but find myself alarmingly at ease with the thought of dying and unable to discus my own situation without getting a bit choked up. Maybe I'm just coping with it by blanking it out.

Jack
01-24-2010, 06:57 AM
I personally just keep thinking I need to live another 10 years...by then my kids will be 14 and 18
Yes, I also secretly set myself targets of how long to live. My youngest daughter is just 14 (eldest is coming up to 19). I would like to teach her to drive and see her through university if that is what she decides to do. That seems to be achievable. :)

jola57
01-24-2010, 07:11 AM
Jack no word can express huw much I hope your target comes true. Both my sons are independent (mostly) one finished BSc and is working in research with plans on PhD he is 25, and younger 22 in his 3rd year medicine. I am forever grateful to the fates and the Good Lord to let me be there for them and I hope to be here for a long long time. I've had this dreaded disease for 3 years now and my humor is still with me. I hope to be upbeat like you after having it for so many years. You are a wonderful example of steady and easy does it and a wonderful dad and family man.

Jack
01-24-2010, 07:22 AM
They both take advantage of me and my wife says I'm too soft on them, but I've developed a bit of a "life's too short" attitude, so if its not that important I let it pass. They still think I moan at them too much! ;)

jola57
01-24-2010, 07:31 AM
Jack I have always had that approach and it paid in spades, I have good children and never had any worries. But while being soft and over giving I still new who their friends were and new the parents. I credit this as one of the reasons they turned out great.

moyan
01-24-2010, 09:19 AM
Hi all, it seems an epidemic midwinterblues is lurking. It found me too, so I wernt groceryshopping by myself today. They have chairs, so 3 min shopping and rest. Got help to pack and load the car but still think :" I made it!!" Tomorrow's task is to cook those turkeynecks, make the best stoup (stew, soup). I find with little goals, I feel better when I manage.

snooz23
01-24-2010, 01:23 PM
Agreed. The blues are in every joint....I always take my weekly dose of metho. on Fri. evenings so that I can recover on Sat. and Sun. before returning to work Mon. So what this means is my only days w/ my kids are spent laying on the couch feeling miserable. And I have this to look forward to for the next 1-2 years!! And that is only if I am one of the lucky, since you never know what will happen in remission or if you ever make it to that point. Well today was particularly difficult--slept away most of it, w/ extreme nausea, lots of head pain and lower back pain. I just hate the way these toxins move through your system, it is very disturbing to me and today I have actually been considering how I never want to put this in my body again (however I do know it is necessary if I want a chance at any kind of success). It is just really hard to not want to give up. I have a few good days and then there is always the one that puts me back in place.

pberggren1
01-24-2010, 08:21 PM
I know what you mean Susanne. I can only imagine what it is like to go through having 2 young children to look after and having to work all week. I hope it gets better for you so you can cope better. I'll keep you in my prayers. Sorry I didn't call this week but I'm not doing so hot either - I seem to be going down hill again. I see my Rheumy on the 29th so hopefully will get some answers as to what is going on with me then. You have Carol Langford as your Rheumy right?

moyan
01-25-2010, 12:06 AM
Would it help a little to think nature is soon awakening? Flowers in colour, no sweaters and ice milk!

elephant
01-25-2010, 12:52 AM
Hey snooz, hope your feeling better soon.
Phil Feb 29 can't come soon enough. Sorry your going down hill.
Looking forward to spring!

Sangye
01-25-2010, 01:21 AM
Phil, I'm so sorry to hear you're not doing well. I think once you see your rheumy you'll get on the right treatment.

I hope you mean Jan 29? Feb 29 is way too far off to be assessed.

elephant
01-25-2010, 01:40 AM
I hope it is Jan 29.

pberggren1
01-25-2010, 07:32 AM
Yes it is Jan. 29. But the last 2 days we have had quite the blizzard here with about 18 inches of snowfall so far and 30 to 40 mph winds and still going strong. I fear the weather will not be good enough to travel on the 29th.

elephant
01-25-2010, 08:15 AM
Hopefully the snow will melt by Friday. How far is it?

snooz23
01-25-2010, 08:33 AM
Phil...I am glad you are going in for an appt. (at least of the weather cooperates). After viewing your pics I had to wonder if that was something that is normal? I mean when you are in remission is that always presence? I am just happy you are going sooner than later.

I do agree sunshine will make life brighter. I cannot get used to these Ohio winters. I am from Colorado, where we have 360 days of sunshine. The sun literally has not shown it's face here in over 7 days. I almost subconsciously keep track, that is how much sunshine affects my mood.

I am seeing Dr. Langford on Feb. 2, so maybe I will ask for some uplifting, positive stories of weggies.

elephant
01-25-2010, 10:26 AM
Great Idea snooz. I love Colorado! If we could find a job there we live there.

Sangye
01-25-2010, 01:33 PM
Snooz, I feel the same way about Maryland. It's cloudy and/or rainy all the time. It feels much worse because I live in this basement and can't see the sky or trees from inside. I totally miss Arizona.

Sangye
01-26-2010, 01:33 PM
Well, I've been alternating days at 3.5 and 4 mg pred for a little over a week now and it's going fine. I'm going to keep this up for another week or so, and if it's still okay I'll try alternating 3.0 and 3.5 mg. Slow and steady wins the race with pred tapering.

elephant
01-26-2010, 01:55 PM
How are you feeling Sangye with the tapering?

snooz23
01-26-2010, 02:00 PM
I am on my way down from 10mg and like the idea of slow and steady and the alternating days. I will have been at 10 for 2 weeks when I see Dr. Langford next Tuesday so I will ask her suggestion and have a few of my own.

Sangye
01-26-2010, 02:18 PM
I'm doing okay. No sustained increase in symptoms. I'm keeping a close eye on it, though and won't hesitate to bump it back up to 4mg if it looks like the Wegs is waking up. My energy is going back up, too. Pred and my body just don't get along at all.

pberggren1
01-26-2010, 03:19 PM
Elephant - I live about 170 miles from my Rheumy.

Sun affects me in the opposite way - I get depressed. I love winter.

elephant
01-26-2010, 10:37 PM
Sangye- glad you are ok. Wish I lived closer to you. I take you to Whole Foods and we would have a ball!
Phil- I am from the north and love the snow, but love the ocean better. The snow is beautiful and love the sound when you step on it.

Sangye
01-27-2010, 02:20 AM
The other day I was feeling a bit more unwell than usual and figured I'd have to go back onto 4mg pred daily. It was a pool day, and even though I felt lousy I was excited to get out of this basement and do something fun. It felt so good, and most of the Wegs symptoms decreased afterwards. The next day was a 3.5mg day, and I felt well enough to stay on the alternate day plan.

I learned something unpleasant while in the pool that day. I do some exercising in the 4-5 ft pool-- walking, leg and arm exercises-- and then go in the diving pool to do water running. There are buoyancy belts you can wear that keep you upright in the pool so you can actually run, simulate cross-country skiing or move your arms and legs in any direction. It's an amazing little invention. I usually wear one the whole time I'm in the diving pool, but that day I decided to try and swim a little so I took it off. I discovered that I was barely having to do anything to stay afloat while treading water. Then I realized every girl's nightmare-- I had way more fat on me than muscle and was completely buoyant. I laughed at first and then felt crushed. I used to have so much muscle I'd sink like a stone. No wonder I'm exhausted by the smallest physical exertion on land!

I'm going to try to get in the pool at least twice a week. I've gotta turn this around. Today is a pool day and I'm really looking forward to it.

elephant
01-27-2010, 05:57 AM
Sangye that is great that you are gettting out and going to the pool, I agree twice a week will be good for you. Don't mean to brag but 30 years ago I was pure muscle and it was hard for me to swim and stay afloat. So I became a runner instead.
Today I went to see my ENT so I increased my prednisone to 10 mg, will see if that works. I am hoping this is not a WG flare. I am not feeling that great. I left a message with my local rheumatologist and told her I upped my prednisone ( the ENT agreed) and so did my renal doctor. Now I am frusttered!

moyan
01-27-2010, 07:17 AM
Sangye, Elephant, Germaine and all of you that are in a downperiod, I wish you fast recovery and Phil who doesn\t like the sun, pull the curtains. :)

elephant
01-27-2010, 09:17 AM
Thanks Moyan, hope your doing well and recover fast. Right now it's a wait in see for a week and hopefully don't need to call the WG specialist.

Sangye
01-27-2010, 09:29 AM
Oh Elephant, I really hope it isn't a flare. The uncertainty factor really does us in with this stupid disease.

I've barely been able to make it once a week to the pool the past few months, but I'm determined to get there twice a week now. I love it so much.

elephant
01-27-2010, 10:31 AM
Sangye, I hope too. I have many things running through my mind....
Sangye, it will be accomplishment for you to make it there twice a week. You will do great!