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sundancer
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Prednisone aftermath
« on: Sep 21st, 2006, 11:32pm »
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I'm a 33 year episodic sufferer.   Prednisone worked for 20 years with few side effects...so I thought.  
For anyone else who has taken prednisone consider getting a bone density scan.  
I'm a non smoker, milk drinker, exercise regularly and have been diagnosed with begining stage osteoporosis.
Hopefully my bones will rebuild with treatment.  Just wanted to give fellow sufferers a heads up.  The stuff is bad sh$t.
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Re: Prednisone aftermath
« Reply #1 on: Sep 21st, 2006, 11:45pm »
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Yes, steroids can and will eat away at your bones, muscles, and immune system (among other things I suppose). It's not to be taken lightly. Steroids are not aspirin. They shouldn't be taken unless you have to take them. Side effects can be devestating or even deadly.
 
Thanks for the heads up sundancer, and sorry you found out about this side effect the hard way. Hopefully it didn't do too much damage to you.
 
Goodluck
 
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Re: Prednisone aftermath
« Reply #2 on: Sep 22nd, 2006, 6:59am »
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Quote:
Prednisone worked for 20 years with few side effects...so I thought.    

 
Were you using pred as a taper or consistently for 20 years ?
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kcopelin
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Re: Prednisone aftermath
« Reply #3 on: Sep 22nd, 2006, 7:43am »
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Sundancer,
I have also taken many pred tapers-over the course of 25 years, probably at least 30.  I also have osteopenia.  Pred does eat bones-but it sure gave me good relief until the verap started to work.
Was it worth it?  Hard question.  I won't do pred tapers any more, now that I know.  
Keep doing your weight bearing exercises, take calcium and good luck.
PFDAN
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Re: Prednisone aftermath
« Reply #4 on: Sep 22nd, 2006, 8:53am »
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We take a lot of dangerous drugs and Prednisone is high on the list of potentially dangerous drugs for treating this disorder.  
 
It seems that I've been reading a lot posts lately that indicate long-term use of Prednisone for treating CH.  I  live with CH attacks nearly every day and my Neurologists regulates Prednisone to one or two tapers per year - only for disrupting severe increases in activity/intensity of attacks - not as a preventative.    
 
While there are a number of serious conditions  (most life threatening) for which long term use of Prednisone is a necessary evil...  
 
Doctors and pharmacists that I've discussed Prednisone with over the years has been very opposed to prescribing it as a preventative for treating CH.  
 
The drug comes with a laundry list of common side effects that all patients taking it short-term need to be aware of and monitor for when taking it.
 
Common side effects of long-term use can be debilitating as pointed out in sundancer's post or even worse - life threatening.  
 
We have a lot of dangerous drugs prescribed to us and unfortuantely need to balance benefits against the potential risks.  We can't do that if we fail to make ourselves aware of the risks.  Believe it or not doctors do not know everything - ask questions, research and become an active participant in your treatment.  
 
Tom    
   
 
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Re: Prednisone aftermath
« Reply #5 on: Sep 22nd, 2006, 7:51pm »
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Good post Tom. Right on the money.
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sundancer
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Re: Prednisone aftermath
« Reply #6 on: Sep 22nd, 2006, 8:02pm »
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Prednisone taper was prescribed, usually for 8-10 weeks once a year.   Fortunately there were a few years I was pain free.  And yes...it was worth it, makes me sick to say it.  Prednisone worked, and I was fully aware of the side effects.  I was closely monitored by my Dr.  Please understand prednisone was a last resort, everything else I tried had visable adverse side effects almost immediately. I took prednisone and had no weight gain, no moon face, I became "wonder woman" for the weeks I spent on the taper, felt energized. Now I rely on O2, kudzu, magnesium, melatonin and gabapentin when the headaches come.
I took a chance, and it brought me years of relief and deteriorating bones.  Just be sure to have a conversation with your physician about a scan to check your bone density if you've taken prednisone.  It's a simple and painless test.  
PF wishes to each of you.
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Re: Prednisone aftermath
« Reply #7 on: Sep 23rd, 2006, 8:37am »
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sundancer,  
 
8 to 10 weeks is a long window for a Prednisone taper.  
 
My doctor gets nervous about two week tapers.   We've extended two week tapers to three weeks by cutting daily dosages and maintaining the two week total dosage.  But that's about as far as both of us were willing to push it.
 
My doctor fully agrees with your statement  - the stuff is bad sh$t.  
 
Hopefully with it being begining stage osteoporosis, further bone density loss can avoided.    
 
Best wishes,
 
Tom    
 
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Re: Prednisone aftermath
« Reply #8 on: Sep 23rd, 2006, 7:13pm »
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on Sep 22nd, 2006, 8:02pm, sundancer wrote:
 And yes...it was worth it, makes me sick to say it.

Sometimes you gotta do what you gotta do to stop the insane pain. I know it's hurting me too, but I do steroids all the time now. Just finshed 2 Medrol Dose Paks in a row and started on 60mg of Prednisone every other day for awhile. (til I decide to quit)  Undecided   I also know the consequences of NOT Taking it  Cry
 
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Re: Prednisone aftermath
« Reply #9 on: Sep 28th, 2006, 12:50am »
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One of the little talked about side effects of long term prednisone use is the impact on the endocrine system.  Have your doc's schedule a consult with an Endocrinologist with all the tests.  You may find yourself on a postmenopausal regiment of Fosamax and hormones to stop .  It’s an understandable treatment if you’re a woman of the appropriate age, but not so easy to explain if you’re a guy…
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Re: Prednisone aftermath
« Reply #10 on: Sep 28th, 2006, 10:47am »
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Good post Tom
 
Yeah I know the syndrome. I took 1 week tapers for bad periods for many years. I have hypothyroid and my TSH always goes over the roof when treated. Weight gain galore.  
 
I am 52 and have a little osteopenia in my hips too from all this. Plus I am menopausal.  
 
What do I do. First of all that was my main reason for going to alternative treatment as in LSD. So far so good. The jury is still out as I am only in month two of busting.  
 
I also do weights for my bones and take Calcium, magnesium and Vit D.  
 
I also take the lowest dose of hormones Premarin every other day. In addition I take natural progesterone cream as in wild yam not the synthetic hormone. In the last two years since the osteopnenia was discovered I have remained the same even had some improvement.
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