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Prednisone
Oh the dreaded side effects of prednisone!!! What ones do you struggle with the most? And how do you deal with each one as it comes?
I'll start off - thankfully I haven't had too much trouble with a huge appetite, which I've heard touted as one of the biggest side effects. Maybe I'm just too stubborn to let myself overeat, and have learned to "go to bed hungry"... maybe it just didn't hit me as hard as it does some people. However, the 2 that I have the hardest time with are not sleeping and weight gain.
As far as the weight gain goes, I found that it helps to re-do my wardrobe as the finances allow, so I actually have clothes that fit and make me feel attractive. My friends and family know why I look chubby and they don't care (as in, they love me anyway) so I've found that when I take time for myself and work on my appearance - but don't slave over it - I feel so much better usually. Still have my days, but when my esteem is up it doesn't bother me as much.
But for the lack of sleep - I had chronic insomnia before the WG started, and was able to mostly keep it under control with melatonin. Now that barely even does anything. I hate taking sleeping pills because I feel even more drowsy the next day - and you all know the constant level of fatigue we have anyway, so that doesn't help at all. I still take the melatonin, because it at least aids in the quality of my sleep, although not in the quantity... any suggestions other than sleeping pills?? I am not an emotional person, but some days it's almost more than I can handle to go without good sleep for so long. Having my hubby to snuggle against helps tremendously, but he sometimes has to work 24 hours shifts or go away for military duty.... Suggestions??
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Steroids... Oh lovely.
Oh, steroids. Why else am I awake at this time while my family has been in bed for at least a good hour and a half?
Lets just state that my family is a sleeping family. On a healthy day, as in when not in relapse mode, I need at least 8-10 hours of solid sleep to function well; but this round of drugs have done a doozy on my body. I now can go to sleep whenever, but I am pretty much guaranteed to wake up every hour (1, 2, 3, 4) until morning. And I wish I was able to function well without the sleep, but for some reason I wake up tired and take naps during the day. Sleep has definitely been an issue with the steroids. I tried sleeping pills also, for about a month, but over the last week I have dropped them because, like you said, they made me feel even more tired the next day. Not to mention, between the sleeping pills and the pain killers (Darvocet because of the Sinus pain and headaches caused by the steroids) I wasn't able to function on a decent level, and my ability to articulate verbally was very low. I am a blonde naturally, but man, I was beyond ditzy on those drugs.
And yes, the weight gain. I had problems with steroids and weight gain in my previous years (mainly in high school) but for some reason this bout didn't cause any irrational cravings... yet. It was actually when they put me on the cytoxan daily that my stomach became unsettled and made me want to eat.
I guess those are my major three this time: insomnia, headaches, scatterbrainedness. Then again, i have been getting so used to the way i feel on these drugs, everything seems normal.
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I was chatting to my mum once, and I described steroids to her as 'my friend, my enemy.'
I absolutely HATE steroids. I first went on them when I was 14 years old, and I hated the side effects so much, that once I came off them I told the doctors I never wanted steroids again, and to put my request down in my notes "do not give this patient steroids.'
I did however, when I started to lose my sight in 2007 following the birth of my daughter. The weight gain was sooo depressing, I just couldn't stand it. And the insomnia was awful too, - I would be up at 3am doing all the ironing, like a crazy woman!
The urge to eat though, is absolutely incredible. I feel so strongly about steroids, that it drives my consultant crazy.
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Gwenllian - you are so right when you say "my friend, my enemy"! An amazingly powerful drug, but boy, does it mess with you!
It was great to get an appetite back (I hardly ate for a couple of weeks before I was diagnosed) but it was just insatiable! In the 4 month period after coming out of hospital, I gained about 15 kilos and had a real moon face.
Since tapering onto a lower dose, the weight gain has levelled off and now I'm swimming and running again, it does seem to be coming off, but oh so slowly!
On higher doses, I had muscle twitches at night, insomnia and terrible trembling. I remember shortly after coming out of hospital, I had to write a cheque for some repairs to the house - my handwriting was so shaky! I ended up paying by online banking, because I just couldn't do it.
And then there's the mood swings - over emotional, euphoric - you just never know.
Now I'm on 12.5mg every other day, and not suffering any side effects. Probably still a bit over-emotional at times, but I was a bit like that "before pred" anyway. Hopefully, in September they will decide I'm well enough and can come off altogether...
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Hi Witho
I didn't know you could take pred every other day, my doctor never gave me that option! Do you find the weight gain/side effects are much less now?
Wegeners Granulomatosis diagnosed May 1995. Tracheal Stenosis since 2000.
Proud mum of 3 beautiful girls, post cyclophosphamide (so it really can happen!) xxx
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Yes, I think the weight gain has lessened. I'm hoping that by keeping up the running and swimming, I can start to lose weight again in earnest. It does seem to be very slow progress though.
Regarding alternate days - well, I guess they know what they're doing! I've been on alternate days for several months now and it hasn't been a problem for me. Not sure why he chose that instead of, say, 5mg per day... maybe it's a good way to get your body used to being without it?
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Originally Posted by
witho
y... maybe it's a good way to get your body used to being without it?
I think that is the case. I was tapered off the Pred this way.
Forum Administrator
Diagnosed March 2003.
Currently but not permanetly residing in Canberra, Australia.
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My side effects are much the same....the weight gain is what I had the most problems dealing with...which I am sure contibuted to the mood swings. But now that I have somewhat accepted my moon face and that someday my face will hopefully go back to normal, I am a happier person, which I have also found I am sleeping much better.
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I am really frustrated right now with prednisone!! I finally got down to 20 mg, which means the weight gain is supposed to stop (according to my doctor)... and it did for a while. I actually lost about 4 pounds. But all of a sudden in the last 2 weeks I've gained it all back - now my shorts that I bought a month ago don't even fit anymore! And the mood swings have come back worse than before!!
I feel bad, because my husband just got back from spending 2 months in boot camp, and I'm crabby so much of the time (totally abnormal for me)... I cannot WAIT to get off the pred!!
Sorry, just needed to vent to people who would understand....
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