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Old Wed Feb 17, 2016, 03:26 PM
Ashleigh K. Ashleigh K. is offline
Join Date: Jan 2016
Location: Birmingham UK
Posts: 21
Thumbs down Prednisone side effects??

Hi! I'm currently on prednisone (30mg once a day, halving the dose tomorrow)
And i find its giving me some really annoying side effects

The most prominent is weight gain, I've been constantly hungry over the past few days (currently craving yogurt lol) however the prednisone makes food taste really funny so I try not to eat too much because it just doesn't taste nice
I'm also getting really bad acne and a "moon face" yikes

I also find that i have trouble sleeping, which with AA is never helpful. Even if i do get to sleep its for max 4 hours maybe??
I also reckon its affecting my mood because last night i woke up about 4am in a fit of uncontrollable crying which is something thats never happened before

What would be the best way to tackle the sleeplessness and weight gain apart from the slow taper??
Diagnosed AA in 2009;treated rabbit ATG+Cyclosporin the same year, taken off Cyclosporin in 2011; Relapsed AA in 2015 and had horse ATG as of 08/02/16. I have copy neutral loss of heterozygosity in chromosome 6p, affecting the HLA region.
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Old Wed Feb 17, 2016, 04:29 PM
triumphe64 triumphe64 is offline
Join Date: Feb 2008
Location: Dallas, Texas
Posts: 439
Those are all very common.

I recommend you take it in the morning. Then you will be awake when you want. I was told that is the normal time your body makes it.
Dallas, Texas - Age 76 - Pure Red Cell Aplasia began March 2005 - Tried IVIG - Then cyclosporine and prednisone. Then Danazol, was added. Then only Danazol . HG reached 16.3 March 2015. Taken off all meds. Facebook PRCA group https://www.facebook.com/groups/PureRedCellAplasia/
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Old Wed Feb 17, 2016, 05:24 PM
GoodDay5150 GoodDay5150 is offline
Join Date: Sep 2014
Location: Centennial, CO
Posts: 126
Hi Ashleigh. AA is pretty hard to go through, as you know. I was on prednisone for a while after having my transplant, and I'm pretty sure that I took mine in the morning. I rem having some weight gain, swollen ankles from it, as well as sweating. I don't rem my sense of taste being effected, but I was taking a lot of meds at that time in addition to the prednisone. Prednisone and some of the other meds that you are taking, and or may take in the future will have side effects that can't be avoided. Good luck in your treatment.

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Old Wed Feb 17, 2016, 06:47 PM
rar rar is offline
Join Date: Mar 2014
Location: colorado
Posts: 211
I was on 120 mg. prednosine. I was getting very little sleep. I took the half the dose at night. I switched all the pred in the morning. A half hour before sleep time I took 1.5 mg melatonin and 1.5 mg generic lunesta. That greatly helped the sleep problem. On the few occasions when I couldn't get to sleep 5 mg oxycodone put me out.

I never get hungry, I went for 3 months without eating solid food and did not get hungry and lost 40 pounds. The last 6 weeks I was on TPN. The pred caused me to loose weight, about 15 pounds in a month. I started eating 5 full meals a day and in a month was able to put the weight back on. A lot of food tasted bad, even chocolate. I had a lot of eggs, yogurt and ice cream. Waist gained 3 inches even as the weight went down. Face got real puffy.

Don't despair. I am down to 5 mg pred and most of the symptoms have improved. I will likely be on it forever.

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Old Wed Feb 17, 2016, 07:48 PM
PaulS PaulS is offline
Join Date: Sep 2014
Location: New York
Posts: 247
Prednisone is a great and terrible medication. After getting some GVHD I was on about 160 mg prednisone - quickly tapered to 50 - and then on fifty for a couple few weeks - gradually tapering - I'm now on alternating doses of 10/20 mg and the plan is to keep tapering as long as the gvhd is relatively under control.

When I was on 50 and a bit less - I was ravenously hungry all the time - particularly craved onion flavors potato chips - which was bad because my potassium was also high -

prednisone also made me diabetic (taking insulin) high blood pressure (on meds for that) and made my muscles wither - also bloated red face, which may be partly gvhd.

I took in the morning and slept best I could - sometimes taking ambient or ativan - Eventually I gave up, and just tried to enjoy the awake time - extra snack at night an a big cup of coffee and big breakfast somewhere between 4 and 6 am. I particularly enjoyed the quiet morning time and would listen to music, read and do email. Not altogether bad - sometimes I'd fall back asleep around 9.

As I taper I'm less hungry, gaining muscle, blood pressure under control and diabetes improving - I'm really looking forward to getting off the stuff.

I was on 10mg daily for a couple of years prior to my BMT - to treat an autoimmune skin condition probably associated with mds - but the side effects weren't nearly as bad as with the higher doses.

Hope you can taper as soon as possible and the side effects go away.

Al the best,
Lower risk MDS diagnosed 2012. Recurring skin nodules treated with prednisone, otherwise watch and wait. HG dropped from 11.5 to 8.7. Kept going down to 5. Vidaza didn't work. BMT from MUD on September 10 2015
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Old Wed Feb 17, 2016, 09:33 PM
Ashleigh K. Ashleigh K. is offline
Join Date: Jan 2016
Location: Birmingham UK
Posts: 21

Thanks for all the info!
I do normally take my prednisone in the morning (around 9am) so there's that!

But another thing I've noticed is that it is painful to breathe, especially right now (its like 2:30am)
I did tell the doctors about this while I was in hospital having ATG and they did a chest x-ray which apparently was fine (i didn't actually see the x-ray though) so idk
But its strange, its not hard to breathe i can breathe fine but it just hurts??
I'm going to the young persons unit for bloods today anyway so I'll probably ask about it.
Diagnosed AA in 2009;treated rabbit ATG+Cyclosporin the same year, taken off Cyclosporin in 2011; Relapsed AA in 2015 and had horse ATG as of 08/02/16. I have copy neutral loss of heterozygosity in chromosome 6p, affecting the HLA region.
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Old Wed Feb 17, 2016, 10:43 PM
bailie bailie is offline
Join Date: Dec 2013
Location: McMinnville,OR
Posts: 825
I was on 160 mg/day. I had a good appetite but didn't sleep well. I did get diabetes that was wild. I was on insulin and my glucose levels ranged from 550 down to the 40s a couple of times. The diabetes went away after the taper. Doctors were surprised that I had no mental effects from the prednisone. I tried a lot of combinations for sleep. Nothing seemed to work well.
age 70, dx RAEB-2 on 11-26-2013 w/11% blasts. 8 cycles Vidaza 3w/Revlimid. SCT 8/15/2014, relapsed@Day+210 (AML). Now(SCT-Day+1005). Prepping w/ 10 days Dacogen for DLI on 6/9/2017.
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Old Thu Feb 18, 2016, 01:42 AM
Hopeful Hopeful is offline
Join Date: Jan 2009
Location: California, USA
Posts: 713
I highly recommend the book "Coping with Prednisone" by Eugenia Zukerman and Julie Ingelfinger, MD for any one on high dose or long-term prednisone therapy.

It lays out what to expect with this "necessary evil" and has excellent suggestions on how to mitigate some of the nasty side effects.

It has been a while since I read it, but one thing I remember is that you want to eat a very low salt diet.
52 yo female, dx 9/08, AA/hypo-MDS, subclinical PNH, ATG/CsA 12/08, partial response. Tried slow cyclosporine taper over 4+ years. Platelets fell, so back on cyclosporine. Trisomy 6 clone in 5% of cells.
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Old Tue Feb 23, 2016, 02:13 PM
johnwc johnwc is offline
Join Date: Dec 2013
Location: PORTLAND
Posts: 42
Prednisone is a deal with the devil!!!
I'm surprised your oncologist or pharmacist didn't tell you of these common side effects.
I have ambien, Kolonopin, ativan, and pot at my disposal for sleep. If I don't do something, I'll hover all night. I'm down to 10mg and will continue to reduce over the next months.

It's a nasty medicine. Ask my wife
John, 68, Portland, Or. Dx with CMML on 12/1/2013, 3 days before admission for SCT, blasts went to 23%, AML. Did 7+3 chemo regimen. The chemo worked and blasts are 1% and did BMT on 1/1/15.- 12/2/15, ongoing GVHD in eyes. Lung fungus and Bronchiolitis Obliterans (BO).
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