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LasVegas

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Episodic CH since 11 yrs
old, now 50.

Posts: 2020
north of the 60th parallel
Gender: male

Pred-Risk/Reward
Jun 27^th, 2012 at 1:38pm

Just returned from a wonderful few outdoor days in Colorado where I used my knees and hips moreso than I have this entire year.

i.e. hiking, camping, white water rafting, caving, etc.

I have never felt such discomfort and actual pain in my knees AND also in my hips. Granted I am not in athletic physical shape, yet I am not out of shape by any means.

I truly believe the discomfort and pain in these joint areas are a result from long term Pred tapers this past Fall.

During my 10 hour drive home to Las Vegas, the sacrifice trade off was on my mind as I thought to myself...what would I rather sacrifice if given the choice...

A. Be in a wheelchair with the inability to walk until I was able to obtain a successful knee or hip replacement and NEVER have another CH cycle.

or

B. Live with CH's and walk problem free.

Personally, I choose the wheelchair as I am a big wimp when it comes to CH pain and after 33 yrs of suffering, I would gladly take the tradeoff if given the option! To each his own, right?

I would still do long Pred tapers, as they personally work for me and when I am TORTURED by the DRAGON the only thing I care about is that moment; however one should definitely weigh out the risk/reward.

Wishing all success with their knees and hips when using Pred! Wink

-Gregg in Las Vegas

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« Last Edit: Jun 27^th, 2012 at 3:34pm by LasVegas »

Wishing everybody at CH.com less pain w/ more productivity in their lives in 2019

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Joshua CH.com Alumnus Offline Posts: 264 x0\|New York\|USA\|\|0\|0\|NY,New_York Gender:	Re: Pred-Risk/Reward Reply #1 - Jun 27^th, 2012 at 2:14pm Hi LasVegas, I've been on a few tapers these past 2 years myself as I (believe) I've moved from episodic to chronic. What kind of tapers and how frequently are you doing them (ie, starting dose, step down incrment, etc.) and how many times do you do this?
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LasVegas CH.com Sponsor Offline Episodic CH since 11 yrs old, now 50. Posts: 2020 north of the 60th parallel Gender:	Re: Pred-Risk/Reward Reply #2 - Jun 27^th, 2012 at 2:35pm Beauty in Aspen! -Gregg in Las Vegas
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Brew CH.com Sponsor CH.com Alumnus Offline Posts: 14163	Re: Pred-Risk/Reward Reply #3 - Jun 27^th, 2012 at 3:04pm You are in Las Vegas. Your screen name is Las Vegas. Clusterbusters is holding their annual conference on September 21 & 22 in Las Vegas. I think you need to make plans to attend. No 10-hour drive. No knee or hip pain planned.
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LasVegas

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Episodic CH since 11 yrs
old, now 50.

Posts: 2020
north of the 60th parallel
Gender: male

Re: Pred-Risk/Reward
Reply #4 - Jun 27^th, 2012 at 3:25pm

Joshua,
Dosages and duration of any medication is relevant to the individual. So what may work for some, may not be effective for others. Hence my 80mg Pred for 3 weeks before I begin a taper for an addtl 3 or 4 weeks is relevant only to me. Whereas others may follow a more traditional Prednisone prescription taper.

Just because I suspect knee/hip problems from Pred should not be misunderstood that this will happen to you. Hope this helps clarify, despite my reply being vague.

Brew, long time no chat. Hope all is well with you. Yes, I have volunteered as a local liaison for this event and am looking forward to meeting you and others who may attend.

-Gregg in Las Vegas

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LasVegas CH.com Sponsor Offline Episodic CH since 11 yrs old, now 50. Posts: 2020 north of the 60th parallel Gender:	Re: Pred-Risk/Reward Reply #5 - Jun 27^th, 2012 at 3:29pm Shoshone Rapids on the Colorado River. -Gregg in Las Vegas
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Joshua CH.com Alumnus Offline Posts: 264 x0\|New York\|USA\|\|0\|0\|NY,New_York Gender:	Re: Pred-Risk/Reward Reply #6 - Jun 27^th, 2012 at 3:34pm LV- totally agree, was just curiuos as I take a dose very similar to yours, but the initial dose is only held for 3 days, not as long. But over time I have had some knee/hip issues as well.
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Lenny

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I love YaBB 1G - SP1!

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Los Angeles,CA
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Re: Pred-Risk/Reward
Reply #7 - Jun 28^th, 2012 at 3:24pm

i would not pick A or B...but i would choose option C...this is like option B (except no-wheelchair) and you would have to trade in your testies for boobies (natural one's of course,and you can still walk Cheesy

)....now on the serious side...

that is a very long time to be taking roids (i've always gone 10-14 days)...in regards of your pains,i have been dealing with the same...i believe mine are from the abuse that i put my body thru playing sports in my younger days (hoping) then again,that 10-hour ride might have something to do with it and the other activities on your trip as well...thank you for sharing those photos (esp the raft,looks like much fun).....Lenny

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yes a newbie,unfortunately not to the beast!!!Chronic - Clusterhead

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LasVegas

CH.com Sponsor

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Episodic CH since 11 yrs
old, now 50.

Posts: 2020
north of the 60th parallel
Gender: male

Re: Pred-Risk/Reward
Reply #8 - Jun 29^th, 2012 at 12:53am

Lenny bro, how are ya pal? No doubt my history of sports and outdoor adventures are the cause of the pain, but my guess is the Pred has escalated the pain to recent opposed to in the future with old age. Good to hear from you brother. Let me know when you are planning your next trip across the Mojave desert. It would be great to hangout again.

-Gregg in Las Vegas

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Wishing everybody at CH.com less pain w/ more productivity in their lives in 2019

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RTD CH.com Junior Offline I thought it was just me Posts: 36 Las Vegas Gender:	Re: Pred-Risk/Reward Reply #9 - Jul 3^rd, 2012 at 4:20pm Funny pic rafting my brother from another mother.. Looks like good times though. RTD
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LasVegas CH.com Sponsor Offline Episodic CH since 11 yrs old, now 50. Posts: 2020 north of the 60th parallel Gender:	Re: Pred-Risk/Reward Reply #10 - Jul 3^rd, 2012 at 10:12pm RTD wrote on Jul 3^rd, 2012 at 4:20pm: Funny pic rafting my brother from another mother.. Looks like good times though. RTD Glad you finally took the time to see these photos. Looking forward to tomorrow's patriotic festivities.
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Lenny CH.com Alumnus Offline I love YaBB 1G - SP1! Posts: 642 Los Angeles,CA Gender:	Re: Pred-Risk/Reward Reply #11 - Jul 4^th, 2012 at 1:37pm You got it my friend.....Lenny
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Imitrex4Breakfast

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Kentuckiana
Gender: male

Re: Pred-Risk/Reward
Reply #12 - Jul 5^th, 2012 at 1:37am

I've also been the very active, outdoors kind of person. And there were several times that I told my doctor(s) to "...Do whatever necessary to stop the cluster attacks!" . Didn't care if I'd end up in a wheelchair or not, the attacks HAD TO be STOPPED. At least for "breathers" (cluster-free times to gather myself together again).

I have had alot of steroids and I did end up with "AVascular Necrosis", a bone disease which literally means "Bone Death" due to the lack of blood flow and oxygen to the joints and bones. It mainly affects the hips, but can get anywhere in your body. I was kinna schocked to learn that I had it in Both hips, Both knees, Both ankles, and Both shoulders (so far).

I've already broken Both shoulders and had them replaced with titanium steel, Plus ...I got 5" titanium rods in both hips "...To postpone total hip replacement".

I don't regret any of it and might not be here today if it weren't for some of the "breathers" that steroids have given me.

I'll walk, I'll break it, I'll replace it, and I'll walk again !!

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