April 22th
2009
11:27 PM
I started taking prednisone along with Cytoxan, a chemotherapy drug 15 years ago when I was diagnosed with an undifferentiated connective tissue disorder that led to symptoms like idiopathic pulmonary fibrosis. After a couple of years, the inflammation cooled off and I no longer had increasing scar tissue in my lungs (IPF is almost always terminal) so I was glad of that. However, sometime in that first year or so I developed hardish lumps under my skin and severe pain that felt like it was "under my skin" but not my muscles, as in fibromyalgia. The lumps are even more painful, and the skin feels as if someone tried to "skin" me and then just llay the skin back down.
I have had to be on timed-release morphine for years in order to function with this pain, as it is especially painful if I brush up against something or sitting or lying down pressure is intense. Also the skin on my tongue gets so tender I have to use kids' toothpaste or it burns terribly.
After 15 years some of the lumps have gone away, but I've recently had to go back on the prednisone for my lung inflammation.
The last time I got a new prescription for prednisone I read the tissue-paper printout (not the short one you get with every Rx, the one written for professionals which includes all the new data, tests, side effects, etc.) What I want to point out, as I've not read one person saying this, is that to avoid a lot of the side effects and the harm to the glands which produce our own natural steroids, is that they are now recommending that it is taken only EVERY OTHER DAY. They say there may be some slight increase in symptoms on the "off" day, but that this keeps the natural cycle in place in bodies subjected to this drug and therefore reduces symptoms.
This is what my last pulmonologist prescribed for me and so far I have had minimal side effects--no ravenous appetite and weight gain, no "moon face" and it has still helped my symptoms.
Please ask your pharmacist for the flyer that comes with the new package and read this for yourself and then take it to your doctor. It may not work for those in dire need of the prednisone but could perhaps be tapered to this once the first lethal symptoms die down. ASK YOUR DOC--I cannot believe I have not heard more about this as it's right on the flyer--but docs are so busy, it's understandable. I'm grateful my doctor is up on the new research because I don't mind taking the prednisone this time, and I used to HATE it!
Good living to all and I wish you all the healthiest life possible.
August 4th
2008
2:38 PM
hi all. thanks for writing your comments here. it has helped me today, another HORRIBLE day of prednisone hell. i have been seriously ill for 8 months been told ever other week I'm likely going to die from lung disease (i'm 35) and after a painful lung biopsy have been told my lung problems are almost all reversible... after a year on high dose prednisone. i was on 40mg a day for a month a while back and was so out of control from rage and crying and insomnia and panic/suicidality, ravenous appetite, that they lowered me to 30. then after biopsy they said i should be on 100mg to cure me, we settled at 60mg. it's been 24 days. The moon face started about one week in. i've gained 8 lbs. i am an emotional wreck. i have at least one rage filled attack per day where i am screaming and want to kill somebody or destroy something. some days i am so filled with hopelessness and worry i just want to die. my body changes (after just losing 30 lbs and being a work out fanatic my shortness of breath makes it impossible to walk up 2 flights of stairs without resting) face changes, acne, excess body hair (oh my god please make it stop i'm like a chia pet and i'm so afraid it is going to get worse) double chin, puffy eyes and cheeks, absolutely uncontrollable emotions and mood swings, inability to be logical or reasonable. i don't want to leave the house, i'm panicked and scared all the time. i never sleep. ambian gives me minimal relief (just started taking it) i feel like i'm losing everything, except my lung functioning is returning and i'm not going to die from this illness (they assure me THIS week) i understand light at the end of the tunnel, but living like this is unbearable most days, almost impossible the rest of the time. am i alone with the severity of this? or are all the others like me too busy hiding the sharps and crying in a corner to write on this board? thanks for listening :)
figures, forgot to mention what HELPS. no eating after 8 (7pm is better) no salt, no sugar, exercise, even just a walk every day, anything physical, i walk like a grandma on the treadmill but i still do it, sometimes it is the only thing that stops my crying. no alcohol, support and understanding from loved ones, it's not you, its the drugs. good luck.
figures, forgot to mention what HELPS. no eating after 8 (7pm is better) no salt, no sugar, exercise, even just a walk every day, anything physical, i walk like a grandma on the treadmill but i still do it, sometimes it is the only thing that stops my crying. no alcohol, support and understanding from loved ones, it's not you, its the drugs. good luck.
July 24th
2006
10:56 PM
I started at 25mcg, then my doc raised it to 75 mcg. I had no trouble before other than lab results were high. With meds I had a few problems. With increased dose I have nervousness, feel almost like I am on speed when the meds kick in for about 7 hours, then I am so tired I can't keep my eyes open. I have a ravenous appetite and yet, have lost 15 lbs. Not good since I only weigh 125. I have terrible abdominal pain, sweating, a lot of hair loss, leg cramps and headaches (something I never get). My doc wants to raise me to 88mcg. I don't think so!
What else can I take? I am checking into natural stuff now.
June 20th
2005
8:04 AM
I know this probably isn't "new"...started on 20 mg. daily after a severe asthma attack. Emergency room here had ALL my history. Doctor (?) should not have even given me this because I take Lamictal (an anti-convulsant) for bi-polar. I was never told about "weaning off" until I contacted an R.N. @ BC/BS of AL. I've had severe tremors, headaches, nausea, diarreha(sp?), black-tarry stool, buzzy-head, severe mood swings, blurred vision, swelling of all joints, sore throat, ear aches, very bad mouth sores, ravenous appetite, hot/cold flashes, dizziness, overall "where am I & what's going on" confusion, hysterical crying spells, racing heart, increased B/P...etc, etc, etc!! For me, there is NO good reason to take this demon drug!! I feel like I should be back in lock down and preparing for more ECT treatments. (Flashback from 6 yrs. ago) My prayers go out for anyone who takes this. From now on, I leave my asthma attacks to God and only God. Blessings to all.
-- By dsmax53 | Reply | Private Message me
April 29th
2005
12:11 PM
At 10 mg reduced to 5.. there probably aren't many side effects to speak of .. if any. Most of us were on some higher dosage (30 is considered moderate to high.. 40+ is considered high - i think). And for a month or more. I didnt notice any side effects the first month. The second month they started. I've just been reduced to 10 / day this week. It will take anywhere from a week to amonth or more for the effects to diminish.. if they are going to ! Sugar has already reduced a bit. Morning sugar was averaging 160-180. Since hiting 10 mg it's been running under 120 every morning.
Ravenous appetite ? I swear Im eating for a family of four. I have day dreams of walking thru the grocery store like it's my own personal buffet !! And yes.. it defies all logic. Ive managed to control it to the extent that Ive only gained 2 pounds in the last 2 months. I will lose it.. I will lose it .. I will go grazing for dinner later !
The puffiness is still there.. but it's not been a week on 10 yet so there is still an opportunity to lose some of it. we'll see.
-- By ericgoberman | Reply | Private Message me
April 22th
2009
11:36 PM
Lumps under the skin all over my body and severe pain that feels like it is under my skin--like I've been skinned and the skin just laid back down raw and bruised feeling. I have to take time-released morphine for this pain and no doctor can explain the lumps other than to say it might be a side effect of the prednisone. I have never heard of anyone else having these lumps and skin pain, though. One post I read said their tongue was sore, which mine also gets when I take it.
-- By mcfadden7204 | Reply | (1) replies | Private Message meOne thing I want to emphasize is that the last time I read the printout that comes with an unopened new bottle of prednisone and that the pharmacists don't give you unless you ask, it said that the newest research suggests that you take the prednisone only EVERY OTHER DAY. Some symptoms may become a bit worse on the day off, but unless you are dealing with a potentially lethal disease, this keeps your body on its regular rhythm of making its own form of prednisone and thus prevents many of the side effects. I have been back on prednisone for 3 months now with the new one day on, one day off schedule, prescribed by my pulmonologist, and have much less of the side effects--no ravenous appetite and thus no weight gain, no swelling, no "moon face" and my lungs are still functioning much much better.
Please ask your doc about this or get the info sheet from the pharmacist (it is the very long one on tissue paper, not the one-page info sheet they are now giving us with each Rx.)