Coming off Steroids

[Viklou]

Since being told I have no active inflammation, I thought I would try and come off the steroids. I'm only on a couple of Budesonide as a maintenance treatment. Anyway things were going OK ish, till my last day of taking 1 tablet. During my taper, I've become very tired, even more so than I normally am. I've just wanted to sleep as soon as I get in from work and sorting the animals. On the last day of 1 tablet, the toilet trips increased, as did some pain. I've not taken any for two days now, and I've been very direct and to the point. I haven't the energy to do much, and I really need to. I'm hoping it just a phase, and I'll get through it. Has anyone else come off their medication and been fine. As if I'm not technically in a flare, then I don't want to take something I no longer need.

[jostafford0]

Hi Viklou, I'm no expert but what you are experiencing is adrenal fatigue. Taking steroids effects your adrenal glands. When you come off the medication your adrenals are having to work for themselves. I have exactly the same issue and absolutely dread going on steroids. It makes me so ill. Please research this as there is a lot of literature out there and talk to your consultant. There are vitamins and herbs that can support the adrenals. Take care x

[Viklou in reply to jostafford0]

Thanks for this and I'll look into it but sounds about right.

[Steve2357]

It sounds like withdrawal symptoms. Did you tell your GP you were coming off them? What strength of tablets were you on?If you were on a high dose pills, you normally need smaller dose pills to give a slow decreas. If you are worried about it talk to your GP.

[Viklou in reply to Steve2357]

Hi Steve no I didn't tell my GP, as no appointments. I have gradually tapered off them. I wasn't on a large dose anyway and my disease is mild. I'm just going to stick it out and if I get worse just start them again. The last letter from the consultant said I could do this and he isn't too concerned. I'd rather not take them if I don't have to

[Steve2357]

Yes, you should get off them as soon as possible, they are more effective over short periods and more effective the next time they are needed.If you are still having problems and do not have smaller dose pills, take the pills every 2 days, then every 3 days excetra.

Hope that helps.

[Viklou in reply to Steve2357]

Thanks Steve, I've been on them continuously since January 2022 after 3 courses the year before. So if I'm free of inflammation I need to come off them

[Lindaspinda55]

I came off steroids too, because my colonoscopy showed no inflammation. However, every morning, steroids or not, I have explosive diarrhea. The dr said I have inflamtory bowel disease. I never have pain with these episodes. Only pain with a flare up and blockages. I’m tired after a very bad episode of diarrhea but get over it quickly. I always wondered if my gallbladder removal had something to do with the diarrhea. I always thought it was the cribs doing it. Im going to ask my dr for something that addresses the bile going into yur intestines which supposedly causes irritation and diarrhea. I can’t go anywhere in the mornings till the brown show is over. My life sucks sometimes.

[VeraSa in reply to Lindaspinda55]

Mornings are the worst. First the air that exits my body like some sort of exorcism on a sound level of a demolition hammer and then the loo runs start and the more I run (sometime on time, sometimes to late - that's the fate with only one bathroom upstairs) the more bloated I get. So, around midday I feel like a balloon.

I know how you feel. It's energy draining.

[bantam12 in reply to Lindaspinda55]

Colestyramine is a game changer if you have bile acid malabsorption after gallbladder removal. Although I also have ulcerative colitis it was having my gallbladder out that caused the diarrhoea problem, I was prescribed Colestyramine and it worked almost instantly, no more problems since.

[Lindaspinda55 in reply to bantam12]

thanks for the info. I wrote that down and will ask my doctor on my next vidit

[Viklou in reply to Lindaspinda55]

They can do a sehcat scan to check for BAM. Easy test just swallow a radio active pill one day then go back a week later for another scan they give you a percentage score and if less than 15% you officially have BAM.I had my gallbladder removed but my BAM score wasn't low enough to have BAM as it was 26%

[markot]

I was good while I was on Budesonide , but the moment we removed symptoms returned. You cannot use steroids long term , it is written even on the manual of budesonide. Now I'm on therapy 6MP , no inflammation , but there is no plan for me to be removed from those. I have small bowel crohn's. Talk about therapy with your gastro like azathioprine and 6MP

[Viklou in reply to markot]

I am having a bit more pain but nothing I can't handle but I've been more constipated recently. I'm not on anything else as my disease is mild even though I was told I had a stricture and there was talk of Biologics in January. It seems now that my CT was clear I can stay on Budesonide as long term treatment, as and when I need them. For now I'm going to see how it goes without them. I'm also on Gabapentin and buprenorphine patches for a nerve condition but I think that's a separate issue

[Sunset203]

Thank you Viklou for your information. I was on Budesonide for 2.5 months and have been off for 3 months. The side effects: weakness, insomnia, full nightly body spasms, mood disorders, etc. have just begun to subside. I wasn't sure they would. So there is light at the end of the tunnel. Hopefully it won't return. Hang in there, and good luck to you.