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Wired on Medications

Steroids

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#1 miocean

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Posted 26 May 2012 - 09:31 PM

Hello,
I have been up 14 hours today. I was up 19 hours yesterday and I really thought I would crash after that but here I am. This is besides taking medicine to control a rebounding headache that will hit 3 weeks tomorrow. So I was laying in bed, staring into space and bingo, I realized I am on a dose pack of steroids in addition to the one I take daily. Talk about the Energizer Bunny.

One more day and I am finished with it...wonder what will happen when it all kicks in. I have been taking it easy today because I expected to get hit with everything from yesterday and am now wondering what will happen when it does finally all hit.

The drug we love to hate.

Any advice or sympathy is welcome.

miocean
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#2 Joelf

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Posted 27 May 2012 - 06:42 AM

Hi Miocean,

I certainly have a love/hate relationship with steroids! They are a mood changing drug; thankfully, I've never felt angry or miserable on them......quite the opposite, most of the time in the beginning I was as high as a kite!!

When I first started taking them, I couldn't believe how much better I felt after a very short time, having felt lousy for probably 18 months before (I've found that I didn't realise how bad I felt until I felt better, if you catch my meaning! ;) ) Within days of starting Prednisolone I was literally bouncing around the place like Tigger, which I realise now was incredibly wearing for everyone else around, especially my long suffering husband who, whilst he welcomed the fact that I was no longer feeling so awful, found it hard going to keep up with my manic energy! (I tend to have a rather in-your-face extrovert personality at the best of times!! ;)) However, after having been on steroids for the last three years, I'm not so ecstatic about them as I was; they most definately do cause weight gain (I was very sniffy about that to start with and pooh-poohed the thought of it! :P ) My mother has been on them for the last sixteen years and her skin is literally like tissue paper (mind you, she's ninety so they don't appear to have shortened her life! :lol:) Interestingly, my consultant suggested that I reduce my steroids to 5mgs (down from 7.5mgs) with a view to eventually coming off them altogether and unfortunately within 4-5 weeks I had a flare up with my lungs again, so I've increased the dose back up to 10mgs, pending an appointment with my consultant. It just shows that in my case Scleroderma is still in the active stage and serves me right for feeling smug and complacent!! ;) :lol:

I've just included our warning for any of our new members who are not aware of the danger of steroids for Scleroderma patients.

I'm so sorry that you've been kept awake by the steroids and I do hope that you'll soon feel better and that your headache will perhaps not be as bad as you fear (the eternal optimist, that's me! ;) ) I'm assuming that you'll go back on the lower dose of steroids that you were on before and that hopefully things will settle down again.

My best wishes to you,

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#3 Shelley Ensz

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Posted 29 May 2012 - 08:58 AM

Hi Miocean,

Properly taken, steroids are supposed to give the user all the energy needed to do a spring housecleaning from floor to ceiling.

So, as the old saying goes, I strongly recommend that you lay down, until that feeling passes!

Have you had your headache looked into? I had a nonstop headache for a month which it turned out was due to a soy allergy; and four weeks prior, I had begun using some soy creamer every day. Remember, of course, to always consult your doctor for any new or unusual headaches.

:emoticons-group-hug:
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Shelley Ensz
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#4 miocean

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Posted 29 May 2012 - 06:50 PM

Hi Shelley and all,
I am doing much better with the headache. I think the migraine turned into a rebound headache. Today is the first day I don't feel it, so that is great! Mine was a combination of going toxic on my transplant meds and starting a new med. If I still had it today I was going to go to a neurologist. All of my doctors are aware of it.

I wrote a Haiku that pretty much describes my life on prednisone:


I lay awake and
stare eyes wide
like dead but alive


miocean
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#5 jad12

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Posted 30 May 2012 - 10:55 AM

That's a really good poem.

#6 Shelley Ensz

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Posted 30 May 2012 - 05:12 PM

Miocean, I love your prednisone Haiku!

I'm sorry you feel that way, of course, but I always admire the life-gives-you-lemons-make-lemonade-and-lemon-pie-and-poetry approach to life!

:emoticons-group-hug:
Warm Hugs,

Shelley Ensz
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#7 miocean

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Posted 30 May 2012 - 06:38 PM

Thanks Jad and Shelley. I wrote a lot of poetry when I was younger, it helped me through some rough times and passionate love affairs!

Here's one I wrote when my headache was really bad three weeks ago and I had to excuse myself from company to go sit outside in the quiet:



When beauty causes pain
When the sound of rain hurts
Light stabs deeply in the brain

Desiring a dark and silent world
Upside down little dipper the only light disturbs

Tires on pavement
Go
Away

From afar soft laughter
Gently mocking
Happy
Happy
Happy

Far away.



I STILL have the headache but it is much better. I am not going to go to a neurologist because I am not going to have a spinal tap. If it was meningitis I'd probably be dead by now and all the people around me would be sick. I can't have contrast for a MRI because of my kidney so it would have to be a big tumor to show up. If it was a tumor then I would need surgery and chemo that would probably damage the kidney.


Aren't I just a barrel of laughs!
The one thing I have learned about life is that things change. The only thing that is certain in life is change.

miocean

P.S. to Shelley, I thought when you read that prednisone poem you were going to be telling me to call 911 so I am glad you liked it!!!!!
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#8 debonair susie

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Posted 01 June 2012 - 10:49 AM

miocean, I am SO glad you have found something that can get you through those times of difficulty, whether it be headaches or pain of any sort!
BTW, I also loved your haikus! I REALLY liked the latter one that you wrote while trying to get through a migraine.

(Some years ago, I discovered, although several years had passed experiencing migraines, that their cause was due to my allergy to aspertame;
I USED to drink diet soda and found the correlatiion to my migraines was with the diet sodas :emoticon-crying-kleenex: ! Since then, I make sure I stay away from aspertame products and have had no more migraines...Knock on wood :P !
Special Hugs,

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#9 Shelley Ensz

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Posted 01 June 2012 - 08:33 PM

Hi Miocean,

Yes, you're right, I can sure be quite a stickler about having people call 911 (the emergency line, in USA). :nervous:

But, having spent a considerable amount of time feeling "like dead but alive", I related to it so well to it that it made me laugh, as I suspect many of us did. I even laughed through your migraine poem, because you nailed it so accurately.

Susie, I'm really glad you found the cause of your migraines! I also eliminated aspertame along the way of battling migraines and after that, I never saw any reason to go back and try adding it in again, either.
Warm Hugs,

Shelley Ensz
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Hotline and Donations: 1-800-564-7099

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

#10 Amanda Thorpe

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Posted 03 June 2012 - 01:04 PM

Hello Miocean

"Like dead but alive"


Should become the motto for anyone with a chronic ailment. I was a migraine sufferer for many, many years and once had a headache for 4 years and that's not an exaggeration. It never went away it just varied in intensity, it finally went away but then came the migraines for years and then they eased off. Unfortunately the first two years of scleroderma the migraines came back with a vengeance and it wasn't until I started amlodopine that they went completely. Now I just have scleroderma!

I recently tried a medication that didn't just leave me "like dead but alive" it nearly killed me off as I had an anaphylactic reaction to it! Can't beat it!

Take care.
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