Does anyone else hate prednisone?

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dianne052506
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Does anyone else hate prednisone?

Postby dianne052506 » Tue Apr 22, 2014 10:17 am

When the CT on April 7th showed there was still some inflammation in my left lung where I had pneumonia in February, my onc prescribed a course of prednisone - 40 mg a day for 7 days, then 20 mg a day for 30 days. This was also when he pointed out that a lot of my pain was possibly coming from the rib fracture he could feel, so prednisone might also help there.
I took the first two weeks' worth faithfully, and actually did feel some better, plus put back on some much-needed weight (about 2.5 kg). Into this third week, however, I am feeling like a raving maniac. I can't control my temper; I can't sleep; and I can't stop eating. (The eating part wouldn't be too bad, except I need to baby my stomach with all the pain meds I am taking).
The side effects bother me so much that I skipped the prednisone for a couple of days. My cough started right back up, so I guess the inflammation still isn't gone.
Do steroids do this to everyone, or is this just in my head?
May 06 Stage IV CC: liver,ovarian mets
Oct 07 inoperable lung mets
Feb 08 - Apr'12 chemo
allergic to oxaliplatin, irinotecan
Aug '12-Feb'14 Genentech PD-L1/Avastin trial
Mar '14 -radiation to largest lung nodule
still recovering; looking at trials again

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CRguy
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Re: Does anyone else hate prednisone?

Postby CRguy » Tue Apr 22, 2014 11:34 am

dianne052506 wrote:Do steroids do this to everyone, or is this just in my head?

Howz about my response to dexamethasone, from my " Hi I'm FOLFOX " topic a while ago :
I have distilled a perfect description of my response to dex :
think...puberty, PMS, hangover, sugar high, manic-depressive, narcolepsy... all nicely rolled into one cute little tablet (or infusion)

hate the stuff myself, BUTT sometimes we gotta do what we gotta do :shock:
Talk to the Onc and see if a dose reduction to a lower maintenance dose would help ????


Cheers
CRguy
Caregiver x 4
Stage IV A rectal cancer/lung met
12 Year survivor
my life is an ongoing totally randomized UNcontrolled experiment with N=1 !
Review of my Journey so far

Ron50
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Re: Does anyone else hate prednisone?

Postby Ron50 » Tue Apr 22, 2014 5:58 pm

When I started developing edeema they did a kidney biopsy and decided I had a kidney disease called minimal change disease. The treatment is high dose prednisone. I was on 75mg a day for nearly eighteen months. I got all of the classic side effects ,moon face ect plus I was like a wind up toy . I could not relax, I was uptight 24/7 and getting little or no sleep. I Was weaned off it over a three month period and then suffered a major psoriatic arthritis flare. I had two more kidney biopsies which have failed to provide a diagnosis. I am now listed as having an auto-immune disease of unknown nature and cause . I am also suffering mild chronic auto-immune hepatitis. I have been on numerous immuno-suppressants . I have just stopped methotrexate after a couple of years and have reached nephrotic syndrome with my kidneys, I now take cyclosporine twice a day. Of all the drugs I have been on I consider prednisone the worst. It has left me with a legacy of osteoporosis. It was suggested that I go on a short burst to help with the hepatitis . All of my liver functions have returned to the black on cyclosporine so I declined the pred. All the best Ron.
dx 1/98
st 3 c 6 nodes
48 sessions 5Fu/levamisole
no recurrence cea <.5
numerous l/t side effects of chemo

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Guinevere
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Re: Does anyone else hate prednisone?

Postby Guinevere » Tue Apr 22, 2014 11:29 pm

I had my onc reduce my steroids because of insomnia and ridiculous weight gain (50 pounds since I started in 2011!) I'm still gaining some weight but not like I was before. So, you might look into a reduction.

God bless~
Guinevere
Hrt atk - Feb 11
CRC4 DX - Apr 11
APR liver rsct, procto - Jul 11
Folfox/Avastin - Sep 11
Xeliri - Nov 11
Iritux - Jun 12
Break - Jan - Mar 13
Iritux - Mar 13
Stivarga - Aug 13
Folfiri - Oct 13
Exhausted treatment options - May 14

dianne052506
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Location: North Carolina

Re: Does anyone else hate prednisone?

Postby dianne052506 » Wed Apr 23, 2014 4:29 am

The lack of sleep must be getting to me; I hadn't even thought about cutting the dosage. I'll call as soon as the office opens. This is existing, not living.
Dianne
May 06 Stage IV CC: liver,ovarian mets
Oct 07 inoperable lung mets
Feb 08 - Apr'12 chemo
allergic to oxaliplatin, irinotecan
Aug '12-Feb'14 Genentech PD-L1/Avastin trial
Mar '14 -radiation to largest lung nodule
still recovering; looking at trials again

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Maia
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Re: Does anyone else hate prednisone?

Postby Maia » Wed Apr 23, 2014 6:53 am

Dianne, definitely, ask your doctor for a reduction (or, better for a slow tapering off, and a switch to other agents). BUT do not skip doses by yourself! It's better if you take less (tapering down) BUT at the same times that were prescribed and you were taking it. The adrenal glands may suffer big time, if you just skip doses.
A combination of celecoxib (Celebrex) and boswellia (a 'supplement') could be an alternative to fight inflammation, *if* your doctor considers it's safe for you (yes, I remember your sulfa allergies... I insist anyway).
Boswellia may look like a silly supplement but is so potent that it's compared to dexamethasone ("could potentially be steroid-sparing for patients receiving brain irradiation" Boswellia serrata acts on cerebral edema in patients irradiated for brain tumors: a prospective, randomized, placebo-controlled, double-blind pilot trial (2011). In your case, not only it's safe for your kidneys but may help them (The use of an anti-inflammatory supplement in patients with chronic kidney disease).

Just as a plus, boswellia has anticancer effects too, in vitro and in mice (Boswellic acid induces epigenetic alterations by modulating DNA methylation in colorectal cancer cells 2012; Boswellic acid exerts antitumor effects in colorectal cancer cells by modulating expression of the let-7 and miR-200 microRNA family 2012; Boswellic acid suppresses growth and metastasis of human pancreatic tumors in an orthotopic nude mouse model through modulation of multiple targets 2011; Boswellic acid inhibits growth and metastasis of human colorectal cancer in orthotopic mouse model by downregulating inflammatory, proliferative, invasive and angiogenic biomarkers 2011 and too many to quote. (Of course, the supplements are not regulated so who knows what concentration you get from what you buy, who knows how it compares with what was used in these studies, etc. The point is that it *probably* doesn't hurt -consult your case, with your doctor- and may help : )

Prednisone and dexamethasone are not something to fool around with; too many side effects, some of them serious.

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elise
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Re: Does anyone else hate prednisone?

Postby elise » Wed Apr 23, 2014 7:33 am

yes yes yes. I HATE PRED :evil:

Try to get through the course to get the inflammation down. Then hope to never see it again!

Elise
2012
Feb - Stage 2 (T3 N0 M0) CC @ 30
Mar - R hemicolectomy, 18 LN
May-Nov 6 - Chemo (8 Xeloda)
2013
Feb - NED
2014
Feb - NED
May - Stage 4 - 1 liver met @ 32
Jun - Liver resection
Oct - CLEAN SCAN
Aug-Jan - FOLFOX 5 rounds, 5FU X 6
2015
Ap, Oct - NED
2016
Mar - NED

dianne052506
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Re: Does anyone else hate prednisone?

Postby dianne052506 » Wed Apr 23, 2014 7:54 am

Maia,
Can I nominate you for a prize or something? I think the Nobel would be appropriate. I can't just lay riches at your feet - I don't have any. Your information and help is priceless, as always.
Just know that you have my enduring thanks.
Dianne
May 06 Stage IV CC: liver,ovarian mets
Oct 07 inoperable lung mets
Feb 08 - Apr'12 chemo
allergic to oxaliplatin, irinotecan
Aug '12-Feb'14 Genentech PD-L1/Avastin trial
Mar '14 -radiation to largest lung nodule
still recovering; looking at trials again

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Maia
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Re: Does anyone else hate prednisone?

Postby Maia » Wed Apr 23, 2014 8:37 am

LOL Image

NWgirl
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Re: Does anyone else hate prednisone?

Postby NWgirl » Wed Apr 23, 2014 8:58 am

I absolutely hate steroids. Last week I had dex on Monday - plus whatever steroid they pumped me full of when I had the reaction to oxi - then dex again on Wednesday for my 5FU and Avastin infusion which I wasn't able to receive on Monday. So 3 doses in a 3 day time frame - yuck! If I just have the one dose of dex with my infusion, it makes me feel like I've had too much coffee - jittery, hard to sleep. But with the 3 rounds last week, it threw me into a depression, which was not a surprise - that's happened before when we tried upping the dex dose in an attempt to control nausea. For me, steroids do not help with my nausea and since we've dropped the oxi from my regimen, I'm going to ask my oncologist to drop the dex altogether going forward.

I get very emotional, weepy, cry a lot. I KNOW it's the steroids, but knowing what's causing it doesn't make it any better or help me control my emotions any better. It's very frustrating. I've only had prednisone once - for about a week. It was a miracle drug as far as inflammation, but my oncologist made it clear that it was for short term use and I didn't want to be on it for any period of time.

Yup, steroids really screw with your mind and emotions - they serve their purpose - but they are a nasty drug!
Belle - "Don't Retreat - Reload"DX 10/07 Stage III Rectal
Surgery 11/07; 27 of 38 nodes
Perm Colostomy 8/11
12/10 recurrence lungs & LN's
VATS Jan 2011
Radiation Oct 2013
Chemo for Life
2012 Colondar Model

orcasres
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Re: Does anyone else hate prednisone?

Postby orcasres » Wed Apr 23, 2014 1:03 pm

We adopted a puppy mill boxer from our island shelter in October and after a lot of misdiagnosis it was determined she has pemphigus foliaceus an autoimmune disease and she was put on 20 mg of pred twice a day initially, from which she became ravenously hungry, incontinent from all of the water consumption, and more aggressive. Diane, there are two reasons I bring this up. The first is that it took us over 3 months to get her off the medicine because she had to be weaned off gradually after it looked it had checked the disease (she will never be cured; the disease has a 50% euthanasia rate). Dramatic changes in prednisone is dangerous for dogs in that it can have a very bad effect on their adrenal systems. Based on Maia's comment above this applies to humans as well so you need to make sure that you coordinate any dosage changes with your doctor so you do not risk serious harm.

The second is that while we were dealing with her physical and emotional changes, we heard a lot of comments from our human friends who HATE prednisone for the exact reasons that you mentioned. A number of them refused to continue taking it and in some cases other steroids were substituted. Again, taking the dog example, prednisone is cheap so they always start with that. If it does not work or the animal cannot tolerate it (we were almost there; I had to sleep with her next to the bed with a leash on her attached to my arm so I could jump up an put her out any time she stirred) they try other things but they are always more expensive and take more blood monitoring.

The only thing I can say is that it did control her problem and hopefully it will stay controlled for a while. I am enjoying more sleep these days.

Take care, Lois
63 yo F
Colon resection Sept. 2010
pT3N0M0 Stage 2A
Medullary Tumor 6.5cm long
Lymphovascular invasion
Lynch negative
12 FOLFOX 11/2010 to 5/2011 8 w/Oxi
NED so far

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Icesk8tr
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Re: Does anyone else hate prednisone?

Postby Icesk8tr » Thu Apr 24, 2014 9:15 pm

Dianne,
I hate all steroids. I'm on Decadron all the time. Every 2-3 months when I go for my CT scans I take 150 mg. of Prednisone in 13 hours. I get sad and mad. My family laughs at me and says " stay away from Mom", she'll take your head off. I hate the way I feel on it....and crashing from such a high dose.

Christine
Stage IV CC 2010

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Cherie
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Re: Does anyone else hate prednisone?

Postby Cherie » Fri Apr 25, 2014 1:17 am

I was on Prenisone for 15 years. Its like you turned the volume up on all you bad emotions... anxiety, depression, anger and then there is the constant eating, loads of energy and the inability to shut your mind off at night. I dealt with all this by demanding some sleeping pills and being on the LOWEST does possible so that my inflammation was under control and I wasn't totally crazy. I found I could get away with 5-10mg and still have all the benefits without the craziness.

This stuff sucks!!
36Yo F
2000 UC
2013 Stage 4 CC 15/126 LN spread to the omentum
June Collectomy all visible cancer removed
July Folfox + Avastin
2/14 clean scan
8/14 Ileo-anal pouch surgery still NED
1/15 Emergency illeostomy spread to peritoneum and small bowel


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