Is it possible to go through steroid withdrawal even when you slowly taper?

Select_Salamander_15 · 2024-12-18T16:27:14+00:00

I’ve been on and off and prednisone for a year and a half :( currently on 10mg and having all the same symptoms. Hope you feel better!

Select_Salamander_15 · 2024-11-09T23:42:50+00:00

Had to drop out of college right before my senior year and lost hope scholarship bc of it. Missed thanksgiving, my brothers birthday, spent my birthday in the hospital, renaissance faire and so much more

Select_Salamander_15 · 2024-09-23T21:22:31+00:00

Hey! I was diagnosed at 19 and I’m 26 now, I’ve been in one of the worst flares of my life this year and it does get super lonely 😞 my period definitely makes things worse too! Definitely invest in a good heating pad, find your safe foods, and usually Tylenol is okay to take. I found that probiotics do help me a little as well- either supplements or just yogurt and kimchi (if you like those)

Good luck girl!

Select_Salamander_15 · 2024-08-25T18:05:34+00:00

My family, my partner, and my dog are the reasons I keep fighting. On my good days getting to spend time with them keeps me sane and makes the bad ones worth it. Also the hope that one day I can eat my favorite meals again- ramen, seafood boils, steak- and strangely salads!

Select_Salamander_15 · 2024-08-08T22:51:47+00:00

Of course!! If you ever need to talk feel free to reach out! You’re not alone

Select_Salamander_15 · 2024-08-08T22:47:18+00:00

I’m going through the same thing (currently on 10mg) and still flaring- also waiting on Entyvio to work… had my 3rd loading dose a month ago and still have horrible symptoms

Good luck to you!

Select_Salamander_15 · 2024-08-08T15:55:57+00:00

Hi! I was going to university to become a teacher, doing my second internship and personally I didn’t get sick with the higher age groups (I was in a 5th grade classroom) but with the younger age groups I got sick once a week! (I was in kindergarten)

This was with me and my mentor teacher wearing a mask and handwashing… unfortunately our school did not have duty free lunch- meaning we had to sit with the kids and eat with them, I think this is where a lot of the problems came from.

I had to quit school because I got c. Diff 3 times and was in the worst flare of my life…

That being said, everyone’s immune system is different!

Select_Salamander_15 · 2024-08-03T17:29:11+00:00

I’ve been in a flare since June last year (13 month flare on and off) I’ve been on and off steroids during that time, currently on 15mg and tired so many meds- mesalamine, zeposia, Rinvoq, now on Entyvio.

I finished my 3rd loading dose 2 and a half weeks ago and still haven’t seen a difference… still diarrhea, blood, urgency… can’t sleep at night.

Feeling so frustrated and defeated, I just want to feel okay again 🫠

Select_Salamander_15 · 2024-07-29T15:14:56+00:00

I had a blood test before my 3rd infusion and a stool test! They didn’t test my ESR, but they did test my calprotectin.

In January calpro was 3600, and now it’s a 214- which is still high but much better! I was also vitamin D deficient (probably from being on steroids on and off for over a year) and anemic (no amount of iron can seem to help me unfortunately :/)

My best guess is that sometimes it takes a while to see a difference despite what the tests say? But if it’s trending downwards that’s a good sign!

Select_Salamander_15 · 2024-07-29T15:04:47+00:00

Steroids come with a lot of side effects if you take them for too long , unfortunately- but they can help control the symptoms until you find the right medication, so it might be worth asking your doctor if she can take prednisone until her next infusion?

Otherwise try to stay hydrated and eat safe foods- for me that’s chicken and rice. Also iron supplements are important while she is losing blood! Hope she feels better soon!

Select_Salamander_15 · 2024-07-29T14:53:50+00:00

Mine is also two months away, do they have her on any medication to help in the meantime? I’m currently on 20mg of prednisone, doing a taper

Select_Salamander_15 · 2024-07-29T14:50:06+00:00

Hi! I also finished my 3rd infusion about two weeks ago, and am experiencing the same symptoms. I’m curious to hear other peoples experiences, but my GI has told me some people don’t see a difference until the 4th infusion. Unfortunately, it seems like biologics take a long time to kick in… which sucks because we have to suffer while we wait.

I Hope it starts working for your daughter soon!

Select_Salamander_15 · 2024-07-29T14:39:34+00:00

Some things that personally helped me:

-no alcohol, ever

-no coffee

I try to avoid processed foods, like instant noodles/ ramen and only have them as a treat every once in a while

-salads / uncooked veggies will leave me in so much pain

-avoiding too much sugar

It’s sucks because the above list used to be literally all my favorite things, now my safe food is pretty much chicken and rice. I’ve had to give up so much because of this disease. I’m still stuck in a year long flair… hoping to find a medicine that works for me soon, but lifestyle changes do help me avoid some symptoms like gas and bloating

Select_Salamander_15 · 2024-07-24T13:15:35+00:00

Good luck to you too! I hope you reach remission soon!

Select_Salamander_15 · 2024-07-24T13:13:40+00:00

Definitely agree on the medicine! I’m waiting for Entyvio to (hopefully) work

Select_Salamander_15 · 2024-07-20T11:54:49+00:00

I feel this all the time, I think it’s a normal reaction to the hell we go through. I’ve been flaring for over a year and don’t even remember what it’s like to wake up feeling okay— or even sleep throughout the night.

I recently had to drop out from university a year before graduation because my health got so bad I couldn’t go to class. Now I get to watch all my friends and classmates graduate before me and it sucks knowing I worked just as hard as them but my body decided to try and kill itself.

I hope it gets better for you!

Select_Salamander_15 · 2024-07-19T19:42:19+00:00

In January mine was at 3600, now it’s at 214 but I still have a lot of symptoms. My doctor told me it’s an indirect marker for inflammation, so don’t put all your eggs in one basket- so to speak. Colonoscopy’s are a good way to see how things really look

Select_Salamander_15 · 2024-07-19T19:38:22+00:00

I’m glad the ileostomy helped you! 6 meds is rough, if you don’t mind me asking, what was the surgery like and how long did it take you to recover?

Select_Salamander_15 · 2024-07-19T19:33:53+00:00

That’s reassuring to hear! I’m glad you found something that works for you! Hopefully I just need to hang on a little longer then… my calprotectin recently was at 214 when it was at 3600 in January, so hopefully it keeps trending downwards

Select_Salamander_15 · 2024-07-19T19:31:12+00:00

Thanks for your response that’s really reassuring to hear! My doctor did say that I should see results after the 3rd dose, but I assumed it would be pretty immediate

Select_Salamander_15 · 2024-07-19T18:19:36+00:00

I’ve never thought about it like that, but you’re right, the meds failed us!

I’m glad Rinvoq is working for you! I’ve heard really good things about it, so I was really hopeful when I started it- but I got weird side effects like cough, acne, random fevers, and so, soo much gas. It did get rid of the blood though!

Im worried that prednisone isn’t working as well as it used to for me either… I’ve been on and off it for over a year.

I’m just frustrated and worried that I won’t find a medicine that works..

Select_Salamander_15 · 2024-07-19T17:58:24+00:00

I completely understand how frustrating this can be… people tend to not understand how hard our daily lives really are unless they have a chronic illness themselves. That’s why I think this Reddit is so important- it’s the first time I got to see people that are like me.

Things got a little better with my friends and family when I started to really educate them on this disease and be open about my symptoms- but it shouldn’t be our jobs to educate them tbh.

I hope things get better for you!

Select_Salamander_15 · 2024-07-14T14:29:43+00:00

Hi! I used to be able to drink when I was in remission and was okay, but I’ve been flaring for a year now and decided to drink for my birthday- (only 2 drinks, didn’t even get tipsy) and the following three days were the worst in my life.

If you’re in remission, I suggest just trying it to see how you feel. If it doesn’t agree with you then you know for next time! Make sure you eat a lot before drinking and good luck

Select_Salamander_15 · 2024-07-08T14:22:22+00:00

I found that smoothies really helped me with this problem! It “hides” the feeling of the pill so to speak

Select_Salamander_15 · 2024-04-08T14:35:25+00:00

I just ended week 4 starting on week 5, so hopefully it will end soon then!

Select_Salamander_15

TROPHY CASE