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Starting Prednisone again


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#1 Bird Lady

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Posted 31 May 2008 - 10:33 AM

I'm starting Predisone again but at a low dose for joint and muscle pain. I've heard some of you say you didn't want to take this drug. I'm not sure what its side effects are. Is it worth taking just to relieve some pain? Does it cause irriatiability? Does anyone have experience with it? Thanks for your input, Birdman
Hugs for All,

Julie (Bird Lady)

#2 Margaret

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Posted 31 May 2008 - 11:21 AM

Hi Birdman ,

Gareth was on Prednisone in Dec-Jan for only 21 days. They started at 60 mg and weaned him off from there. The kid had the worst nightmares.......I felt so bad for him!!! He would come screaming down the hall and grab me like something was after him. He would lay down in bed and you could just see the fear in his eyes.....not wanting to go to sleep. With the DS&Autism, though, it was hard for him to understand the drug/nightmare relationship. He will have to be awful sick before I go that route again.

Take care, Everyone.
Margaret

#3 janey

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Posted 31 May 2008 - 11:37 AM

Birdman,
I've been on 2.5 to 5 mg/day of predinose for almost 5 years. 2.5 mg/day is about as low as I can go without the return of pain and muscle soreness. I really haven't noticed any side effects. My bone density has remained high. At that low of a dosage I never got the moon face or the irritability that some suffer. I did experience some side effects from it last year when they had me on 100 mg/day for 10 ten days. My hubby starting calling me "She, who must be obeyed." :lol: Thank goodness for us both that was short term and I was back to 5 mg/day within a couple of months.

I hope it works for your pain. It's help me with the pain and the fatigue.

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Janey Willis
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#4 JudithL

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Posted 31 May 2008 - 12:30 PM

Hi Birdman. I've taken two courses of Prednisone, each time starting at 40mg and tapering down to zero over a few weeks. During the first course I experienced bursts of energy ... found myself cleaning the house at all hours. The second course made me very emotional; situations I would normally take in stride suddenly reduced me to tears. Both courses achieved their goal of reducing inflammation in my feet.

I hope the Prednisone brings you relief.

#5 barefut

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Posted 31 May 2008 - 06:49 PM

Hi Birdman,

I started out on 5mg about a year and a half ago. It was a tremendous help with my muscle pain and stiffness as well as the fatigue.

After about a year, I tried to taper off and within a week of going down to 4mg I really felt it. I was surprised that such a small amount could make such a difference. I knew it's normal to feel some increased pain and stiffness for awhile while tapering so I stuck with it.

I stayed at 4 for a long time until I started having real trouble getting up in the mornings and getting through a days work so my rheumatologist said to go to 10mg for awhile. I did and then got worried about weight gain and other nasty side effects and eventually weaned all the way off - which only lasted a month before I was back to 5 mg again. It seems this is a good dosage for me to stay at. I still have pain and stiffness but it's bearable.

I am interested in other medications that will do the same thing as prednisone for me. I don't know what the risks and side effects of other meds are as compared to the low dose pred. I think there must be something else out there that will do an even better job with less risk and side effects so I keep my ears open and ask my rheumatologist about anything new.

#6 CraigR

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Posted 03 June 2008 - 09:54 AM

There are many reasons why you might want to avoid Prednisone. Unfortunately, nothing else seems to be so effective at reducing inflammation. You may want to do further research on this site, since one of the dangers is increased kidney trouble in scleroderma patients.

I had a complete hip replacement done a few years ago due to an avascular necrosis, and was told that it was probably caused by Prednisone therapy. There are many other possible side effects, including reduced bone density, tendency to gain weight, diabetes. It can effect your mood- especially in the higher doses (as others have mentioned above, I also tended to be short tempered and very energetic - so energetic that I would forget to take it easy).

Doctors usually want to get you off of it (or at the lowest dose) as soon as possible, due to the possible side effects. I won't touch it, and use pain killers instead.

Good Luck,

Craig

#7 Leslie R.

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Posted 03 June 2008 - 01:08 PM

Hi Birdman,

I just recently went back to 20 mg from 5 mg Prednisone, because I was experiencing pain and swelling on my right hand. My Rheumatologist told me that with my Scleroderma I am experiencing muscle joint pains and with my Lupus I have inflammation. He said that with the 20 mg until this Saturday go back to 10 mg, and if I do experience any swelling and pain he will have to put me on a anthihistamine blocker. I don't like taking it because it makes me eat alot but will have to, since I have both autoimmune disease, the only way to deal with this is to treat each symptoms. Good luck and hang in there you can beat this.

Sincerely,
Leslie R

#8 GocartMoz

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Posted 03 June 2008 - 03:49 PM

Hi Birdman,

I hope you are doing well aside from the joint and muscle pain. I was on Prednisone for a good 14 months or so during the end of 2006 and all of 2007. I can tell you there is alot of information out there that Prednisone has many side effects and use of it long term can lead to a number of problems. Thankfully my experience with it did not result in any side effects. Hopefully I will not see any fall out from it in the long run. Although I am very foggy about my hospital stay, I believe at one point I was on 80 mg. or possibly even more(I honestly don't remember, I only know it was alot). I was on 40mg for along time. I can tell you that in late 2006 I was experiencing horrible joint and muscle pain and ended up at a hospital for that along with dehydration and other issues. They put me on Prednisone and it was like magic when the joint and muscle pain began to fade within hours. That being said, I was always very scared of the drug. Most doctors don't like using it and only do so when it is absolutely necessary. There is some research out there that Prednisone use on patients with Scleroderma can be contraindicated. For me it worked, but make sure you talk to your doctor about it in depth. It can lead to bone density problems in the long run, I believe kidney issues and other problems. It can also result in significant weight gain. I was lucky not to experience that problem. Frankly, what is strange is that I continued to lose weight while on Prednisone. That is not the norm, however, I am told. Be careful and talk to your doctor about it. Good luck and I hope you get some relief soon.

#9 bmw

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Posted 05 June 2008 - 11:36 AM

Thank you everyone for all your input. Birdman

#10 Shelley Ensz

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Posted 05 June 2008 - 11:44 AM

Overview of Glucocorticoids, Steroids

Corticosteroids strongly increase the short-term risk of developing scleroderma renal crisis!

Glucocorticoids are any of a group of steroid hormones, such as cortisone, that are produced by the adrenal cortex and are involved in carbohydrate, protein, and fat metabolism. Glucocorticoids have anti-inflammatory properties. They can be prescribed to dampen or stop the chronic inflammatory chain of events. Depending on the particular glucocorticoid that is used, inflammation can be affected at different points in the inflammatory pathway.

Glucocorticoids and steroids should never be stopped suddenly. Drug dosage must be tapered over time in order to allow the adrenal cortex to start producing the hormones that have been replaced by the drug. Always follow your doctor's tapering schedule when coming off these drugs.

Corticosteroids (such as prednisone) strongly increase the short-term risk of developing scleroderma renal crisis (kidney failure). It also causes a 70 percent increased risk of developing pneumonia. It is crucial to avoid corticosteroids in patients with systemic scleroderma.

Read more on sclero.org at Glucocorticoids, Steroids (Prednisone) and Scleroderma.
 


Warm Hugs,

Shelley Ensz
Founder and President
International Scleroderma Network (ISN)
Hotline and Donations: 1-800-564-7099

The most important thing in the world to know about scleroderma is sclero.org.

#11 truman

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Posted 05 June 2008 - 12:55 PM

I had to start again in the hospital. Currently, I'm weaning off. It's a miracle drug in that it masks all symptoms which is not a good thing. The other detriment I heard is that once in, it never leaves your body. It's a decision that is worth weighing the pros and cons. Sometimes, there is no choice.
Tru

It is what it is...........

#12 bookworm

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Posted 05 June 2008 - 01:20 PM

Shelley,
Is this renal failure risk usually or always associated with high doses of steroids?
I've been on a 3-5 mg. dose of steroids for at least a year or two. I've talked to my doctor about the renal failure risk. She just says it''s not likely on such a low dose and that she has never had any of her sclero patients have renal failure. She also points out that many or even all the drugs we are given can have really awful side effects -- and we all know this is true!
My doctor is an expert on sclero and she consults with Dr. Mayes in Houston, who is listed on this website as a sclero expert. She just says that, unfortunately, we have to weigh the risks vs. the benefits of all of these drugs. I really couldn't be functioning without prednisone and my doctor tells me I probably will always be on 3-5 mg.. I do worry about it and about having my immune system suppressed, but I don't really know what else to do except stay informed and make sure I have a knowlegeable doctor abd then listen to what she says and decide how far to trust her!

Mary in Texas

#13 debonair susie

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Posted 06 June 2008 - 06:07 AM

Hi Birdman,

You've been given so muc h great, useful information... that I sure couldn't add anything more.

My husband takes Prednisone for COPD/lung issues. Of course, due to the length of time and doses, he just went this am... for a bone density scan, which is recommended anytime one is on it as he's been.

Years ago, I saw a rheumatologist who wanted me to go on Prednisone, but I chose not to and my personal choice is to continue without it.

I hope that you have success withyour pain control.

Susie
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Susie Kraft
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#14 Shelley Ensz

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Posted 06 June 2008 - 08:04 AM

Hi Birdman,

It is always difficult to assess the risks/benefits with drugs. Here is an excerpt from one of the studies on our Prednisone page:

Scleroderma Renal Crisis (SRC): Retrospective Multicenter Analysis of 50 Patients. EXCERPT:

At scleroderma renal crisis (SRC) diagnosis, the mean serum creatinine and creatinine clearance were 468 ± 293 mumol/l and 18.3 ± 15.3 ml/min; 56% of the patients required temporary or chronic hemodialysis.

During the 6 mo prior to SRC, 44% of the patients had been exposed to corticosteroids (CS) (mean maximal prednisone dose: 48 ± 25 mg/d).

Ace inhibotors (ACEI) were prescribed to 47 (94%) SRC patients, with 55% of them already taking this medication at standard dose at the time of SRC diagnosis.

After a mean follow-up of 47.0 ± 59.7 mo, 40% of the patients required chronic dialysis, 34% had died and 56% had been on chronic dialysis or died. *END OF EXCERPT*

I believe this means that the patients were taking 48 mg plus or minus 25 mg, which would be anywhere from 23 to 75 mg.

I have heard they generally recommend less than 2 weeks of prednisone treatment at the lowest doses possible in scleroderma patients, to try to minimize these risks. But you are right it is a tough decision, and sometimes there are no viable alternatives, either.

We all might want to make sure that our doctors are fully aware of the risks of prednisone and scleroderma, and discuss our concerns about it with them, as often as need be.


Warm Hugs,

Shelley Ensz
Founder and President
International Scleroderma Network (ISN)
Hotline and Donations: 1-800-564-7099

The most important thing in the world to know about scleroderma is sclero.org.

#15 Sam

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Posted 07 June 2008 - 11:41 AM

I have taken predisone and other steroid injections it had me gain weight I was very irritable and had other side effects like sweating day and night. I won't ever go on it again. If you are on it good luck. Sam
Sam

#16 MaryFanPhilly

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Posted 09 June 2008 - 11:10 AM

Ah, prednisone, how many of us have love/hate relationships with THAT one. I've been on it for 3 years now and the adrenals aren't kicking in to pick up the slack from six months of trying to wean off.... adrenal crisis is no joke, so beeeeeeeee careful with prednisone, treat it like dynamite. In other words don't mess with it unless you have to, use the smallest amount for the shortest amount of time you can, and be respectful of what it can do. I am now diabetic, have high blood pressure and high cholesterol thanks to prednisone. Desperate to go off it but can't....I'd like to have a waist back some day, too..... Love, Mary in Philly
Diffuse sclero; diabetes; hypertension; GERD with Barrett's

#17 Timo

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Posted 09 June 2008 - 01:22 PM

Hi Birdman and everyone!

I have been on high doses of prednisone for about five years now. While it has helped me greatly and allowed me to finish high school (i'm 20 now) it has caused a lot of damage to my bones that I am now fighting to repair. I have osteoporosis now with the bone density of a 90yr old. It really frustrates me that in trying to treat my illness I have added more complications, but I don't think I would be anywhere near this active if it weren't for the prednisone. Unfortunately, like many drugs available to us you must look at the risks against the pay offs.

#18 dmc929

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Posted 09 June 2008 - 02:41 PM

Hi Birdman, I've had scleroderma and prednsione for 28 years. I've been up and down, on and off the prednsone for all this time. I am currently on 15mgs because I've been extermely badly short of breath even though I am on oxygen 24/7.
I am here to tell you it is easier getting off a narcotic than it is prednisone. I can tell you first hand if you plan on staying taking the prednsione take as much calcium that you can, prednsone steals the calcuim from your blood. Because of the low calcium you will grow weak muscles. your lungs and heart are muscles too. I am here to tell you prednisone makes you feel good then coming off it makes you moody. I now have osteoprosis very badly and I am going through menapause which makes that worse.
Because I've been on the prednsone so long I can no longer get off it, it keeps me going. But I am hoping after this series of high doses I can get back down to my 5mgs that is not so much hassel. Check in with me in two weeks.

dmc929 from florida

#19 YFChoice

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Posted 09 June 2008 - 03:18 PM

I've been on 5mg of prednisone for 10 years. I've tried to get completely off but can feel the difference when I do. I can't and won't function without it. My rheumatologist is very good and says that at such a low dose, I'm ok with it. I don't have any of the problems others have. I took 70mg for a couple of months back when I was first diagnosed........that was horrible. But 5 is just fine with me.

Bookworm, I know Dr. Mayes. Her word is good as far as I'm concerned.

As Tru says (and welcome back by the way) "Sometimes there is no choice."
~ You have to think anyway.....you might as well think big