Warrior in the house! brace yourself

8/11/21

greetings and salutations to old friends and  newbies... Have I been missed? Where you at Bob- my brother in arms-...  Yes been  awhile.  membership is now renewed for life time and wanted to touch base.  Warms my heart seeing you all still out here fighting the good fight.  and  goodness, the amount of new members is incredible. Glad to see word is getting out.   I have a lot of catch up to do so figured I start here.  

Currently, the tapering of prednisone has created some challenges.  No one should be on Pred for 35 yrs. I was. I will be on it forever but just now hoping for a maintenance dosage, forever.  Long term use of pred has shut down adrenal glad which is your  cortisone maker. We all know how important Cort is.  Pred will knock its socks off. IT did.It has. U suffer.   when reducing it, if you can,  the medical issues it "masked" come out ten-fold.

Last summer 2020, four months in and out of hospital with.. MRSA,PG, CELLULITIS,  was where I said "time for my paper work to be updated".  Last Will, POA,  etc papers all done then. Really thought I was gunna buy the farm. 

After all that, I developed RA...  now psoriasis has me under its spell.  this i believe this is what the pred was masking for a long time. Psoriatic Arthritis.  PSA. The fun part is watching your finger nails  corrode.. split. crack turn color.. bleed under the nail..   Am receiving acthar and otelza and in months,  noticeable improvement. The rheumo knew his stuff.  however ins co refused to pay. You gotta get the right doctor folks.   I would have this guy's baby if I could. 

Now  tapering to the lowest dosage of pred  in my life ( 7 mg daily)   he hopes to jump start the adrenal glad.  film at 11.

Next issue..  the head scratcher.. bleeding.   veins popping.  in ankles...  its a monthly ritual.. and get this.. it occurs.... when removing socks.  like a gyser,  usually its one vein in ankle..at the ball joint .

 it heals with direct pressure. and I am good for anothen month.  yep. like clock work.  recently, I had pops at  both ankles and left arm. talk about a WTF moment.. can U imagine not enough hands to stop the bleeding??? have you ecer seen blood shoot out of your body in three places at same time?  Felt like I was in SCI FI flick.  Even Hithcock would faint. 

no sense going to ER. They are too stupid to understand..tried it tho, they fixed me.. sent me home. while in waiting room for ride home, I bled out in wheel chair. Nice fix at  2 a.m.  think Covid, open blood wound..in a hosptial waiting room..... anyone coming to help???   dont hold your breathe.  wheeled myself back in OR pissing blood from ankle..  try wheeling yourself with one hand.  

so I deal with it like I did this morning . coming out of shower, towel drying the area... pop.  but wait... you see the squirt hit the wall, but cant really tell the location is  until you move hand around down there.. is it one or two places now?  should I say oink oink, cause damn I am a stuck pig at that moment.  let that image set it.  

I am not a newbie. JOined the site in 2019. been long time sufferer of IBD. --35 yrs. Perm. ilio.... facing two more surgergies...

This site is where you can ask " have you heard of this before"... "does this happen to others"?  

And Yes I am on blood thinners for DVT.  But you know what the real kick in the cajones is?  the inability to understand people talking to you.  Inflammation can attack any organ in your body.

Having Crohn's doesn't help.  It attcked cochlear.  both ears.   

This site, the people, is just  inspirational.  Am adding my two cents.  You newbies, don't be afraid to ask. This place and its people are priceless.  become a member , pay the price  before YOU really pay the price. .----Warrior

Wow, Warrior - you have really been through so much! Glad to hear that you're OK. Take good care of yourself.

Laurie

HI there. good to hear from you... I ....am...... trying......... thus...I ... am...  a  warrior! :)

Yes, you are!

Laurie

Welcome back Warrior.

I hope the tapering down off the dreaded pred goes OK.

So good to see you back. You are truly a Warrior to go through all that you have and come out on the other side. Hope you can get everything under control. Best wishes and stay strong.

Yo Bro!  

I'm right here Kimosabe........holding down the fort, awaiting your triumphant return!!  And here you are!!!!!!  So glad to hear you're still kickin'!!  That's one of the things that suck about this site........when someone drops offline on here it's usually not for a good reason.  And there's not much we can do about it except wait and hope they come back. So GLAD TO HAVE YOU BACK, BRO!!! WE DID MISS YOU!  Heck, I was just thinking about you as I was jabbing a couple Humira pens in my leg about 20 minutes ago.  You and a couple of others that have disappeared.  So far you're the first one back.  And it's good to have you!

Sounds like you're doing your darndest to make the medical journals, eh?  Prednisone and I are old friends, so I hear ya.  I was living on it when I had sepsis for a few months before they removed most of my guts.  What a wonderful drug.......that can (and will) seriously f&*k you up!  And it's such a tiny little white pill.....what harm can that do???  After my last op they thought my adrenal glands were shocked a bit when I cold turkeyed off 80 mg of pred a day.  I'm not sure that was the case, but back then I was in no shape to argue.  I ended up seeing a good Endocrinologist in Annapolis, and my adrenals got their shit back together, and all was good.  Glad to hear you're getting to a maintenance dose and you're dealing with quality Docs.  You're right.........the right Doc makes ALL the difference.  Problem is there's more quacks than "right" Docs out there, and finding the good ones is a bit challenging.  One of the reasons I make friends with as many nurses as I can.    

Wow, love the visual of you squirting up the walls with blood.......ala Hitchcock.......you must be a real hoot at cocktail parties!!  Your old pal Prednisone has a nasty habit of making our skin thin and blood vessels inflammed, as well as the great combination of higher blood pressure and Thrombophlebitis (blood clots that inflame your veins).  It's an equal opportunity drug for sure. 

I hope you plan to stick around..........it really is your turn to guard the moat........the castle crumbled to pieces years ago.  Watch out Ostomates............the Dynamic Duo are reunited and back in da house!  Time to rock this place (again) Batman!!

;0)

bob  

Thanks Bob.. yea were gunna be like the bionic mans here..  we can rebuild it, make stronger  faster,  laughable.  looking foward to that. all in good time.  sorry to hear about  the others  disappearing but I felt a need to come back.     the " I get it"  people here are a true blessing.. including yourself, mate.   you can't understanding people in the mainstream..  you , we,  need this place.  where esle can you talk and poop and feel embarrssed.

Sorry to hear of your moms passing on mothers day.. I checked in then.  think I may have texted you. we had text number at  one time.  if you recall my mentioning how when people disappear , and phone system  shoul dbe set up...  i mean whatever happened to our candian girl.. ??  brit something?   I did see a few  people  Ihad touched based long time  back here.. at least  their pics are here ...

boy, time flies and we are certianly not getting younger.. wiser perhaps... shape shifting too.. 

do you remember the sitcom "cheers"... the theme song?? that is  this place for me.   making your way in the world today takes everything you got. wouldn't you like to go..... where  everybody knows your name.. everyone cares you came.... you can be whatever you want, nobody feels ashamed,  you wanna be where everybody knows your name... (added lib there a bit) 

you be our "NORM!!!"..   Me,  im trying out for SAM... even at 60 I am better looking  than him.  and still a  warrior.  hee hee.   CHEERS!   

I don't know why britathrt60 quit posting . I looked her up and she has not posted since April 2020. It also said she was last online a month ago. I sent her a letter a good while back but didn't get an answer.

Warrior - Welcome Back! I've been on 5mg of Prednisone for 37 years so I know some of the side effects even though the 'moon face & buffalo hump' recede. One new caution: you will need a booster shot of COVID-19 vax as Predisone lessens the efficacy of the vax by 20% according to my Doctor. Also sounds like your INR might be out of whack with the blood thinners so you may want to (with MD's guidance) try Eliquis if you are on Coumadin, Pradax if you are on Eliquis, etc.) to stop the spontaneous spurts. Good Luck! Bryce

Hey Warrior, 

I was only on Pred for 15 years.  I'm glad I listened to my doctor when she said there was not much more she could do for me but I could stay on that drug.  That was in the Summer of 2019.  I saw that one of our local ballplayers came out as an Ostomate and that gave me the nudge to push for surgery.  No regrets at all.  After the surgery, and continuing today, I'm always tired and sometimes unmotivated to do anything.  I contacted my Doc who told me Prednisone withdrawl is akin to kicking heroin.  Might take 6 months, might take 6 years.  Keep the faith and keep fighting.  

SharkFan

Hey Shark Fan....   good to hear from ya.  yea keeping the faith.. and fighting.. indeed.  So are you now pred free?  sounds like it.. but the withdrawl.  hmm  I dont remember that...  but I do know  I have to taper slowly.. very s l o w l y...  this is the first time in many years I get so low.. to 7 mg...  and then RA pops..  PSA?  psoriasis..  ugly shit man. so I will stay at 7 for now.. next year maybe taper  to 6...  heading for knee surgery soon.. so who know that will come of that..  will report  though...  thanks for the input.  keep kool.. Warrior 

Hi Warrior, I am new here and am saving towards membership.  Either good probiotics or membership.  Darn gotta go with probies.  I have been on prednisone since Dec 2015 for Giant cell arteritis n poly myalgia rhuematica.  I have made it to ten milligrams and since missing two days of med decided to try dropping to 7.5.  I normally crash n burn but I have to get to 5 mgs for surgeon to feel ok to do another surgery.  
i had explosive diarrhea one night n now I am afraid to go anywhere, not sure if I would want blood or poop.  I hate them both.  Well back to bed last night was up all night emptying bag, not typical to poop at night but 4 days it has got to get out sometime.  So sick since the 3rd and now another diagnosis.  One on top of another what is that all about.  Glad to meet you.  Linda