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Prednisone side effects on partner

Posted by rosemammag @rosemammag, Aug 1, 2024

My Husband was diagnosed with ulcerative colitis about 15 years ago before we got together. It was managed with Sulfasalazine up until a year and half ago he was hospitalized from extreme anemia and needed several blood transfusions. We almost lost him, it was scary. In the last 6 months the doctors decided to change course and get him on a IV infusion to treat his UC. They also put him on a high dose of prednisone. The first corse of infusions didn’t work well unfortunately, so until they could get him on a new higher dose & more frequent treatment with the IV infusions, he’s stayed on the prednisone. Now for 6 months.
I see him but he’s not there. He’s not himself any more. He can be mean, insensitive, quick tempered. He seems to sundown so I know it’s worse at night. So I try to just give him space. He’s put on a lot of water weight and acne I know inside he’s miserable. It’s so hard though! I feel like a monster. It’s so confusing I wouldn’t stay with a person that treats me like this but it’s not his fault. I’m trying to just be patient and leave him alone if he needs. I really just could use some support because I don’t know what I’m doing. It feels so backwards.

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rosemammag | @rosemammag | Feb 16 3:26pm
In reply to @hammock117 "My husband got septic each time he had colon surgery. On a ventilator both times for..." + (show)
@hammock117

My husband got septic each time he had colon surgery. On a ventilator both times for a month.
No Dr makes the person or family aware of the cognitive changes from the illness or medications. Other people including attorneys took advantage of our family.
Noone prepares or protects the caretakers when patients decide they di not like you anymore.

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Thank you for reaching out!
It sounds like we have a lot of similarities.
Since my original post my husband was just starting Remicade and now I believe he is on Stalera now and finally fully tapered off prednisone as of a few months ago. I think they are still navigating his dosages but life was starting to feel back to normal…(ish) it took me a while to trust him or feel close to him I felt very resentful and too had to process the really meant things he said and did to me. We were on the verge of separating because it was getting so bad. I slept on the couch sobbing every night because I felt a monster because he was the one dealing with this awful disease… and (this sounds bad) but a little afraid of him. THERAPY! and
support groups actually helped a lot and helped me better understand what the prednisone was doing and how I could best act around him to not triggered that”flight or fight” response.
Things did started feeling normal… I felt like I was getting my husband back and then out of some screwed twist of fate… I became seriously ill and now I am on a high dose of prednisone. I swear it feels like a messed up fever dream. There are no words to tell you how devastated I am (when I’m able to feel things) that after we were getting our lives back here I am on the other side. Fortunately I learned ALOT from these support groups, no my triggered and try to be very communicative about what’s going on with me prednisone wise so my loved ones that there is certain times of days I need to stay in a calm peaceful place and not to get me worked by bringing up high energy, emotional or heated convos topics. At least my husband understands. Unfortunately / Fortunately I can’t work so I always have to be calm and serene because of how sick I am. Be that as it may, I appreciate you sharing your experience and will take that to heart. I don’t want to be sick and loose myself.
Take care of your self and I hope you and your husband both get closer to normal as soon as possible.
-Rose

REPLY
catartist | @catartist | Feb 16 5:19pm

Enough it does - just. ( I take iv Orencia, Cymbalta, Tylenol and Gababentine very occasionally for restless legs)
As for lemonade … yes! An active ( if always dealing with ‘The Pain”). life of walking, biking, skiing, kayaking, multi day boating, golf, tennis and Plein air painting, volunteer work, travel and running my own illustrator representation agency for years in various combos! And family! I am grateful for prednisone - tho I realize it’ll probably end me too - I really lived! We need to be grateful in spite.

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rosemammag | @rosemammag | Feb 16 6:22pm
In reply to @catartist "Enough it does - just. ( I take iv Orencia, Cymbalta, Tylenol and Gababentine very occasionally..." + (show)
@catartist

Enough it does - just. ( I take iv Orencia, Cymbalta, Tylenol and Gababentine very occasionally for restless legs)
As for lemonade … yes! An active ( if always dealing with ‘The Pain”). life of walking, biking, skiing, kayaking, multi day boating, golf, tennis and Plein air painting, volunteer work, travel and running my own illustrator representation agency for years in various combos! And family! I am grateful for prednisone - tho I realize it’ll probably end me too - I really lived! We need to be grateful in spite.

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Thank you for sharing! Makes me want to cry..(in a good way!)
As soon as my husband went on off prednisone I became extremely ill, i cant’t work or do a whole lot but low energy things. I refuse to be a pessimist! I’m on a very high dose so I’m definitely feel the negative side effects but (even though I ironically can’t have any citrus right now;) I’m still making the dang lemonade. I worked as a chef but now trying to master the art of gf baking when I have the energy. I can’t get a Michelin Star now but I get to look like a Michelin man! (Still have a sense of humor) I’m an artist and haven’t had the time to finish and start so many pieces till now, my husband works all day into the late evening 6 days a week but I have a dog, 2 cats, a baby bunny, a hamster and a 20 gallon aquarium full of colorful fish… so I feel like Snow White… or Cinderella? Either way… a moonfaced princess still smiling with spite. I know I’d be living in the hospital or dead now if I didn’t have it part of my treatment. Knowing how many things you’ve been able to achieve, beautiful experiences and a family!…. With the support of prednisone. REALLY puts things in perspective! I appreciate your encouragement and light.
-Rose

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catartist | @catartist | Feb 16 8:06pm

I’m glad you are still smiling too! Oddly I have lost too much weight lately- but my cheeks look chubby when I smile… so more of that!!! Keep it up too

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catholicgirl4ever | @catholicgirl4ever | Feb 23 10:49am
In reply to @mbhcm "I hope since you posted this that life has gotten easier for your husband and you...." + (show)
@mbhcm

I hope since you posted this that life has gotten easier for your husband and you.

My husband was diagnosed with UC late in 2023, he was put on mesalamine which fast tracked an horrific flare, a 50 lb weight loss in 2 1/2 months, a hospital stay with multiple transfusions. They prescribed Humera and a high dose of prednisone. At first he was weepy and clingy (very out of character) and then the anger and meanness came. Like you, I gave him space. We are lucky enough to live on the pacific coast with great beaches so I spent a great deal of time there collecting agates. The Humera was working well enough that he was able to phase out the prednisone thankfully. The Humera stopped being as effective and he is now on renvoq which seems to be working and life is almost back to normal.

My issue is that, while I am acutely aware that he was going through something horrible and painful and on mind altering drugs, I am left feeling resentful of his treatment of me during that time.
I’m having flashback memories of things he said and did that I suppressed.
I feel awful and guilty having these feelings.
Being a caregiver is such hard and important work.

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I am having the same experience. My husband treats me horrible and threatens divorce. Everyday I must read the room a the can go from nice enough to angry quick. It is an awful way to live. Gives me anxiety.

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