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JOESMASH's Photo JOESMASH Posts: 380
8/31/11 5:44 P

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I'm with Margaret!

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MARGARETK1969 SparkPoints: (0)
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8/25/11 6:55 P

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Did anyone tell you that it also can cause early stages of osteoporosis? (osteopena)
i have had it for 8 or more years. i got all the symptoms leg cramps, thrush, etc.
i finally told my doc i wouldnt take it anymore... not to mention weight gain i had never had
a weight problem til i started the stuff and now i can't loose it.

NEED2MOVE2's Photo NEED2MOVE2 Posts: 1,128
8/21/11 9:12 P

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It drives me nuts to, BUT it makes me feel better. For me.. I get the night sweats, afternoon shakes, red ( looks like wind burn face), facial hair, weight gain.....
So when the doctor says that forbidden word.. I shutter think NO.. but know it will help get me out of the flare - up.

All I can say.. if you are on Prednisone.. you will feel better.
Stay strong everyone! emoticon

Edited by: NEED2MOVE2 at: 8/21/2011 (21:12)
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VWLOVER71 Posts: 13
9/13/09 9:59 A

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Jeeze. At least we are together. I have been on the 'sone off and on for 21 years. Other meds work for a while but soon enough I'm bleeding again. I have had 23 ortho operations because of aseptic necrosis, diabetes, cataracts the works. I had been doing great lost 32 pounds and this week I gained 5 with no change in diet. Not to mention hot flashes. emoticon

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ADOPTMOM1 Posts: 8,660
8/22/09 10:12 P

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OMG Mekitty! Just hearing about that makes me ache all over for you. Miserable doesn't even begin to do it justice. Hopefully you're beginning to mend now?

Tami

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DREANIGIRL8's Photo DREANIGIRL8 Posts: 119
8/20/09 2:44 P

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I can relate.

I usually start on 50mg which causes me to do crazy things like rearrange cupboards at 3am. My kids once got up in the morning and I'd made every package of Jell-o in the house. They had to eat it for three weeks.

At 40mg the fatigue sets in because I've been awake for a month. At this point my doctor usually prescibes trazodone to take off the edge. It doesn't make me want to stop eating, but at least I'm a little more relaxed about it.

By 30mg I've usually regained my mental strength to remind myself I just ate by placing sticky notes on the fridge and cupoboards marked with the time I just ate. It can be quite the fire hazard.

At 20 mg my doctor starts talking about taking me off prednisone as my flare is healing well and I get excited until I realize I still have two weeks per 5mg until I'm off it and that's only if I stay symptom free. He prescribes something for the heartburn that comes from EVERYTHING including water.

At 15mg I know the end is near, but I'm still sick of everyone asking how I'm doing. I also go through a vicious beef craving cycle (I don't normally eat red meat) which puts Alberta cows in danger.

At 10mg I dream of not looking like a puffer fish because the prednisone has made me so puffy people think I've been in a front end collision and bashed my head against an airbag.

At 5mg I pray for the end and try to trick myself into thinking I'm no longer sick. Sometimes it works, but a trip to the bathroom scale usually knocks the wind out of me. By this time I'm usually off the other medications that I take for the side-effects.

That's my predisone story and I dedicate it to all the other puffy people.
emoticon

DEANNROSSETTI Posts: 64
3/8/09 1:02 P

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MeKitty, I am so sorry to hear about your post op flu bug...and I had to LOL about it being one of Dantes circles of hades, I think you are right about that. But I hope that if you do have to be on prednisone for awhile that you are able to go back off soon. I really empathize with you, as I was on steroids for 15 years, most of my childhood, and it was not fun. I understand the dread of taking it all too well. But you are obviously a survivor and a strong person, so I bet you will get through this just fine.
I'll say a prayer for you today.
Take care

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MEKITTY626's Photo MEKITTY626 Posts: 5
3/5/09 1:21 P

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I think I might be in the same boat as almmonk3. I was tapered off of prednisone prior to surgery, and I though "Yay!!! no more pred head!". But it seems like I'm gonna be back on much sooner than I had hoped. Before I had even been released from the hospital my tummy was hurting after I ate food, and everything coming out of my ostomy was getting looser and looser. The night I came home from the hospital I ended up having a nasty bout with the stomach flu (I do not recomend it post op. Vomiting with a tummy full of staples is an activity best reserved for one of Dante's circles of hell). I am hoping that all of my possible flare up symptoms are because I was coming down with the flu, but experience and reality force me to take the more cynical perspective on it all. I don't want more prednisone....weight gain, insomnia, anxiety attacks, mood swings, forgetfulness, and the health risks...... I truly dread it.

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ADOPTMOM1 Posts: 8,660
3/5/09 11:07 A

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Bleh, I had to take a medrol dosepak for a bronchitis and asthma flare last week and I'm still having the after effects from it. Loads of acid reflux and bad skin around the ostomy. Plus, of course, I was ready to kill anyone around me by the second day. I can't imagine taking it for weeks on end. Yikes!

Tami

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ALMMONK3's Photo ALMMONK3 Posts: 32
3/4/09 6:28 P

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I know what you mean. After my last flare up and a weekend in the hospital my Dr. put my on 20mg prednisone. After a week of feeling better my Dr. said I could start cutting back. With in 3 days I had a major flare up and he increased my dose to 30 mgs. I have been taking 30mg for 3 weeks now. I feel great regarding the crohns but yucky from the side effect. My Dr. told me it could cut down now starting by cutting 5 mgs off a day. Yesterday I had bloating distention and at night stomache burning and cramping. I am working through it trying to be very careful with what I am eating, and Im working through the pain. I want off of this med so bad. I will ride it out. Wish me luck. Oh Today,I feel alot better. Hopefully it was just something I ate. At lease thats what I telling myself. Postive thinking can go along way. emoticon

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KITTYKATLOVER's Photo KITTYKATLOVER Posts: 165
3/4/09 3:52 P

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Oh yes ladies (and gents) I've got mood issues with pred too. When i'm on a high dossage I'm manicly happy, fully of energy (and insomnia.) When I'm on lower dosages, I'm snappy as heck. Mean even.

Right now I'm on 5mg. Guess where my mood is. emoticon

Another problem I have today is that after 3days on 5mg, I've started to flare again. This is my 3rd attempt at tapering down from 10. I'm still going to taper flare be damned.

I have to get off pred. I've been on it since early Dec.

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* Sheri *
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I love cats and art. I hate working out.
"Love all the Earth, every ray of light, every grain of sand or blade of grass, every living thing. If you love the Earth enough, you will know the Divine Mystery. ~-Dostoevsky-~"


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ADOPTMOM1 Posts: 8,660
2/15/09 9:02 A

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Yeah, my son has to take it occasionally for asthma, just 5 days worth at a time and he's a menace when he's on it. He's got a bad hack right now and I asked him if he wanted to take it since I have some and he said NO!!!! He already has that one figured out at 11.

Tami

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DEGRANA Posts: 5
2/14/09 5:51 P

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I hated prednisone when I was on it.. Not because of the weight issues..

I became moody like you can not believe. If someone didn't return my smile I would cry and a minute later I would want to kill someone...

I am thankful that I was taken off of it when I was. I was close to losing my job with my drastic mood swings. My step mother was put on it for her MS and had the same problems..

If you can get on another drug do it.. It is a very evil drug..

emoticon

ADOPTMOM1 Posts: 8,660
2/12/09 2:43 P

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AHHH! Understood. I'd better hope I don't run into needing to take meds then because I can't take the prednisone. Stuff like this is enough to make me go off on a tirade about the health care system but I'll spare you. You already know. I run into similiar issues with my ostomy supplies. Obviously those limits and allowables are set by some pinhead who doesn't have a clue what an ostomy is, let alone has ever had one.

Tami

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DEANNROSSETTI Posts: 64
2/12/09 11:38 A

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Tami, I know that there are other medication options than steroids, because I am on a bunch of those drugs for my Crohns, but the drugs that I take (Balsalazide, Azithioprine, Pentasa and Nortryptaline) cost in excess of a thousand dollars a month, and my crappy insurance does NOT cover it. I know I am not alone in having trouble affording my meds, though, because I have had others with Crohns email me about it. I also have heard my brother lament about how hard it has been for him to get his insurance co to pay for Humira, and before that, Remicade. He was on steroids for years because the meds I am on didn't work for his Crohns at all, or he had terrible side effects from them. So affordability is a factor here (prednisone is cheap) and the other drugs might not work for some Crohns patients.

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ADOPTMOM1 Posts: 8,660
2/12/09 8:30 A

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Ugh! aren't there way better medication options in 2008? I mean, I'm asking, not criticizing because I haven't had to take meds. I reacted to prednisone and azulfadine, the only two out in 1986 so they decided to see how I'd do without and that's how it's been ever since.

The new gastro I just went to told me there were alot of other medication options and he tried not to use prednisone any more. That's why I'm asking.

Tami

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KITTYKATLOVER's Photo KITTYKATLOVER Posts: 165
2/10/09 8:10 P

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Not to discourage you but it's pretty impossible to lose weight on Pred. =(

Best we can do is maintain.

Good luck!

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I love cats and art. I hate working out.
"Love all the Earth, every ray of light, every grain of sand or blade of grass, every living thing. If you love the Earth enough, you will know the Divine Mystery. ~-Dostoevsky-~"


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ALMMONK3's Photo ALMMONK3 Posts: 32
2/10/09 6:38 P

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wow, That information is scary. I was p[laced on prednisone about 2 weeks ago. Starting at 20 mg a day. I felt better shortly after and my Dr. wanted said I could start weaning off of it. I hate the way it makes me want to eat constantly. I was about 1 week into dropping the dose when i had another flare up with the pain returning in my right side. He immediatly up my dose to 30 mg and wants me to tkae that until I start the Humira injections. I was really hoping I could get off it right away, but it doenst look promising. I am feeling better now and im tring to journal my foods and how i react to them. I was diagnosis in May of 08 and since then have had 1 attack which sent me back to the hospital for a weekend. I consider my self lucky, my symptoms are still fairly mild compared to some of the blogs i have read. I am new to this and still confused about what i can and cannot eat. I have to retrain my brain to not eat fresh veggies and Finer. I dont want to regain any weight but i think its inevitable. I have been gpoing to the gym as much as I can. But that doesnt help when all I want to do is eat....

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DEANNROSSETTI Posts: 64
2/10/09 1:45 P

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Kittycatlover,
Honey, I can empathize with you like you would not believe. I was on prednisone or decadron or solumedrol almost continuously for 15 years, from the time I was 5 until I was 20 and in college, and I was very overweight throughout elementary, junior high and high school because of cortisone. I was always hungry, and never got that feeling of satiety that most people get when their stomachs are full. Steroids have brutal side effects, and I ended up with most of them, including excess facial hair, acne, delayed menstrual cycle (I didn't get my period until I was 17) round face and back hump and weight gain, periods of elation followed by depression, times when I had so much energy and anxiety that I couldn't sleep for days on end, and ruddy cheeks. There are people who have become suicidal on steroids, or developed diseases like Cushings Syndrome from the drug. So you can be glad you don't have that, at least.
But the hunger thing is a beast, I know. I do not know of any way to assuage or tone down that particular side effect without going off the prednisone entirely, and even then, it takes something like 6 months for it to get out of your system completely, because its a hormone.
I would recommend exercise, as much as you can tolerate, to keep yourself from gaining a lot of weight. Prednisone also used to make me potassium deficient and I'd always bloat up with water retention, too, which only added to the misery of being obese. The one good thing about having had so many steroids growing up was that I can get my muscles to respond to weight training a lot faster, and I build muscle easier than most women my size. That's not a lot of comfort, I know, but its the best I can offer. Try to eat healthy stuff, avoid too much salt, eat bananas to help your potassium and work out to try and maintain a healthy weight.
Hang in there!
DeAnn

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KITTYKATLOVER's Photo KITTYKATLOVER Posts: 165
2/10/09 1:19 P

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Pred effects me in stages...


Stage 1: 40mg Hyper! I cannot sleep, don't care about food, full of engery and I lose weight.

Stage 2: 20mg range. I'm tired. Gosh I just need to sleep.

Stage 3: 5-10mg. Can I eat the entire house? Are there any cows around? I could eat an entire cow? Do you have some chocolate? Please sir may I have some more?


Right now I'm on 10mg and I can eat and eat and eat....My appetite is out of control. What do you do to cope when pred makes you like this?



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* Sheri *
(. (.

I love cats and art. I hate working out.
"Love all the Earth, every ray of light, every grain of sand or blade of grass, every living thing. If you love the Earth enough, you will know the Divine Mystery. ~-Dostoevsky-~"


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