Prednisone Tapering and Unexplained Bleeding: Seeking Advice

In this discussion
Replies
12
Views
1283
warrior
Gray Logo for MeetAnOstoMate

Why Join MeetAnOstoMate?

First off, this is a pretty cool site with 33,102 members. Get inside and you will see.

We're not all about ostomy. Everything is being discussed in the forums.

It's a very special community, embracing all ages and backgrounds. People are honest and truly care.

Privacy is very important - the website has many features that are only visible to members.

Create an account and you will be amazed.

Past Member

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

Laurie

Gray Logo for MeetAnOstoMate
warrior

Hi there. Good to hear from you... I am trying... Thus... I am a warrior! :)

Past Member

Yes, you are!

Laurie

Past Member

Welcome back, warrior.

I hope the tapering down of the dreaded pred goes okay.

 
Words of Encouragement from Ostomy Advocates I Hollister
lovely

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.

w30bob

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 inflamed, 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

warrior

Thanks Bob.. yeah, we're gonna be like the bionic man's here.. we can rebuild it, make it stronger and faster, laughable. Looking forward 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 understand people in the mainstream.. you, we, need this place. Where else can you talk and poop and feel embarrassed.

Sorry to hear of your mom's passing on Mother's Day.. I checked in then. I think I may have texted you. We had each other's numbers at one time. If you recall, I mentioned how when people disappear, phone systems should be set up... I mean, whatever happened to our Canadian girl.. ?? Brit something? I did see a few people I had touched base with a long time back here.. at least their pics are here...

Boy, time flies and we are certainly 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've 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, I'm trying out for SAM... even at 60, I am better looking than him. And still a warrior. Hee hee. CHEERS!

lovely

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.

Bryce

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 vaccine as Prednisone lessens the efficacy of the vaccine by 20%, according to my doctor. Also, it 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, Pradaxa if you are on Eliquis, etc.) to stop the spontaneous spurts. Good luck! Bryce

SharkFan

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 withdrawal is akin to kicking heroin. It might take 6 months, might take 6 years. Keep the faith and keep fighting.

SharkFan

warrior

Hey Shark Fan.... good to hear from ya. Yeah, keeping the faith.. and fighting.. indeed. So, are you now pred free? Sounds like it.. but the withdrawal. Hmm, I don't 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 knows what will come of that.. will report though... thanks for the input. Keep cool.. Warrior

Past Member

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 and polymyalgia rheumatica. I have made it to ten milligrams and since missing two days of med decided to try dropping to 7.5. I normally crash and burn but I have to get to 5 mgs for surgeon to feel ok to do another surgery.
I had explosive diarrhea one night and 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

All times are GMT - 5 Hours