More evils of prednisone

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CrohnsDaddy
Regular Member


Date Joined Oct 2007
Total Posts : 235
   Posted 6/27/2009 6:48 AM (GMT -7)   
Seven years ago, way before I was diagnosed with Crohns, I discovered I had mild degenerative disc disease in the lumbar region of my spine. Sure, it caused some pain, but I dealt with it.

Fast forward to March of this year. I awoke one morning with a mind-blowing pain that started in my mid-back, went over my left shoulder, down my left arm, and into my left hand. Mind altering, scary pain. I had no idea pain existed on this level, and I had had my appendix burst years before, so I thought I knew what real pain was. I *thought* that was painful. Not even in the same category as this pain. Definitely a 10 on the scale.

I immediately made an appointment with the back specialist who had diagnosed my lumbar degenerative disc years before. Luckily, he could see me in 4 short weeks. Yes, that was sarcastic. I was put on his cancellation list, and was able to see him in three weeks. Luckily by that time the majority of the pain was gone. He didn't like what he saw on the xray, and ordered MRI's done of Lumbar and Cervical spine areas.

The MRI showed not much change to the Lumbar degeneration, but a brand new set of problems: Three cervical discs all in various stages of degeneration, most likely caused by long term prednisone use. Only option: surgery. My neurosurgeon told me that I needed to taper off of the steroids as much as I could possibly stand before surgery. Steroids inhibit new bone growth, and I was having a disc fusion, which is dependent on new bone growth. I tapered down to five mg before surgery.

As I tapered down past ten mg of pred, I had another flare of the same pain.. through the back, shoulder, arm, hand. I was just about to the point of chewing off my own arm when the surgery day came. I awoke from surgery in pain from the surgery itself, but that was such a minor thing.... the huge nerve pain was gone, and I darn near broke down in tears. The recovery room nurse was alarmed.. "are you ok??" I said, yeah, more than OK, I'm fan-freaking-tastic.. the nerve pain is gone! According to my neurosurgeon, I still have at least one more (and probably more like two or three) of these surgeries to go through, if (when) more discs degenerate as badly as the one I had fixed. He also stated that my bones were losing hardness; he screwed four screws into two vertabrae and discovered the bone was pretty soft. This is also due to prednisone.

And of course I'm a pred-dependent Crohnnie. Such a decision... Spend most of my life in the intimate study of porcelain, or end up with a mostly metal, completely rigid spine before I turn 45. Guess I'll flip a coin...
Just trying to be a "Regular Member".


Entocort 9 mg/day, Prednisone 20 mg/day, started Humira 1/22/08, started 100 mg of Azasan (Imuran) 2/20/08. Increased Azasan to 150 mg 10/15/08. Discontinued Humira 11/03/08 after extreme fatigue and moderate muscle aches. Started Cimzia 12/4/08. Down to 5 mg/day of Pred now, and will continue to taper until completely off as long as the other meds keep me off the porcelain.



I'm convinced that Prednisone is the root of all evil, and primarily responsible for global warming.

Post Edited (CrohnsDaddy) : 6/27/2009 7:51:48 AM (GMT-6)


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 6/27/2009 6:54 AM (GMT -7)   

Oh goodness I am so sorry you had to go thru that.  I myself have had to have 2 disc's in my neck fused and I too can attest to how painful that nerve pain is.  I have arthritis in my neck too now, so it will ache from that, but its not as bad as when I had the nerve pain.  Hoping they can find a med to help you get off the darn steroids and stop this bone damage.  Also, have you ever been tested for Ankolysing Spondilytis?  That is another condition many with Crohns have.  Something you might want to talk to your docs about.

Hugs

Gail *Nanners*


Gail*Nanners* Co-Moderator for Crohns Disease and Anxiety/Panic Forum
Been living with Crohn's Disease for 33 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, Calcium  w/Vit D, and Xanax as needed for my anxiety.  Resections in 2002 and 2005. Also diagnosed with Fibromyalgia, Osteoarthritis, and Anxiety. Currently my Crohns is in remission, but my joints are going crazy!
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

J-
Regular Member


Date Joined Jun 2009
Total Posts : 86
   Posted 6/27/2009 8:00 AM (GMT -7)   
IM SO SORRY. how long have you bin on the pred for. i just started and am scared of all the nasty things it can do to us. im newer to all this so i have more Q's then answers (as most of us)
diagnosed with crohn's 6-15-09 at age 23.

meds:
asacol: 400mg. 3 3X a day
prednisone: 10mg. 3 in the morning

supplements:
multivitamin, cal/mag, probiotic, digestive enzymes, rice protein. looking into l-glutamine next


CrohnsDaddy
Regular Member


Date Joined Oct 2007
Total Posts : 235
   Posted 6/27/2009 11:55 AM (GMT -7)   
Nanners, the same back specialist that diagnosed my initial lumbar degeneration had me do the blood test for Ankylosing Spondylitis (which my brother and my mother both have). I have the genetic marker for it, but according to the Doc, I don't have "any active AS". Thank heavens. I've gone through most all of the Anti-TNF's, most of which offered little if any benefit. It just seems like there's no substitute for prednisone yet; it's really the only med that knocks the Crohns down hard.

J., I'm terribly sorry you have to take this poison. There are a few (the lucky ones) that are able to take prednisone for many, many years without much in the way of side effects or actual damage. I certainly hope you are among them. There are also a few here that say "don't hate prednisone until it hates you." In my opinion, those people are wrong. Start hating prednisone fast, early, and hard. Before it has a chance to stab you in the back or any place else. The problem with prednisone is often times you have no idea that it's causing any damage until it's done, permanent, and severe. Don't do what I did: get complacent about it, thinking that since it's helping my Crohns, I'll "Just keep taking it". Keep with your GI, and actively try and find something else that will give you the relief of prednisone, so you can get off the pred. The odds are that it *will* hurt you in some way eventually. For me (so far), it has caused *severe* glaucoma, bone loss and softness, severe cervical spine problems (uncovertabral joint, foraminal stenosis, central stenosis, bone spurs, degenerative discs), moon face, mood problems, ox neck, and insomnia. Oh, and the neurosurgeon says I will probably never recover full use and strength of my left tricep, or feeling in my left index finger.

Thank you, Prednisone.
Just trying to be a "Regular Member".


Entocort 9 mg/day, Prednisone 20 mg/day, started Humira 1/22/08, started 100 mg of Azasan (Imuran) 2/20/08. Increased Azasan to 150 mg 10/15/08. Discontinued Humira 11/03/08 after extreme fatigue and moderate muscle aches. Started Cimzia 12/4/08. Down to 5 mg/day of Pred now, and will continue to taper until completely off as long as the other meds keep me off the porcelain.



I'm convinced that Prednisone is the root of all evil, and primarily responsible for global warming.


J-
Regular Member


Date Joined Jun 2009
Total Posts : 86
   Posted 6/27/2009 12:54 PM (GMT -7)   
oh!
diagnosed with crohn's 6-15-09 at age 23.

meds:
asacol: 400mg. 3 3X a day
prednisone: 10mg. 3 in the morning

supplements:
multivitamin, cal/mag, probiotic, digestive enzymes, rice protein. looking into l-glutamine next

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