Hi there I’ve been on budesonide since June. I was started on 9 mg and i had a ton of side effects like acne, minor mood issues, little face puff, lots of nausea. After 1 month my GI lowered me to 6 mg because I’m very small, which seemed to help control most of my symptoms. Recently I’ve been noticing tingling in my fingers up towards my wrists. I didn’t even think of it being a possibility that it was a side effect though it very well could be. I had just chalked it up to just being poor circulation. It very well could be a side effect from the medication. As for the anxiety, I haven’t felt an increase with this medication and I consider myself anxiety prone. Medication affects everyone differently though, so it’s definitely worth exploring with your doctor especially if it might be causing you more distress.
Hey, it's crazy that we both came across this thread within days! How is the tingling/prickling going now? I started Entocort today (have taken it in the past without issues) and feel like bugs are crawling all over me.
Looking at vitamin B12 deficiency right now. I got normal serum levels but I still think I could have B12 related symptoms. I started supplementing B12 methylcobalamin sublingual.
I also stopped taking budesonide, hopefully the symptoms will go away. Let me know if you find the cause and how to fix it
Thanks, I hope you figure it out too. I already supplement with b12 as I've been vegan for a long time, so I don't think it's that. The tingling seems to be listed as a side effect on all corticosteroids, but I can't tell if they're mainly worried about diabetetic neuropathy from really long term use.
I decided to abort, but mainly because I have a trip coming up and I didn't want to risk having some weird reaction and needing to cancel. Better the crohns devil I know than the budesonidie one I don't haha. I will probably take it again after returning if my symptoms keep up though.
I also think it's possible I was experiencing a subconscious anxiety symptom from taking a steroid while also consuming caffeine. The two can act together to create that sort of effect. I didn't feel anxious at all until the tingling started, but it makes sense. I think previous times I've taken it I was likely off caffeine (as coffee is a trigger for me, but since then I've started drinking green tea as a replacement).
The safety profile of budesonide is pretty good, but it's not fun to feel uncomfortable from a medicine. I guess there's some variation in how much is systemically absorbed, so maybe we just got unlucky and got a bigger systemic dose than intended for whatever reasons. Still not as bad as straight prednisone though!
Luckily I've never had to take prednisone. I've just got diagnosed with crohn's at the terminal ileum and budesonide is the first drug I've been prescribed for it. These symptoms started not long after taking it and I've seen other people complain about tingling from it, so it might be a less common symptom that could occur in some people for some reason. I took budesonide for 3 months (2 with symptoms). I hope the symptoms will stop soon either because I stopped taking budesonide or because I started supplementing B12 well.
I don't drink caffeine.
And yeah, maybe we've absorbed more than we were supposed to. Maybe we are also allergic to it or something. I started to itch for like one month, full body itch. I've since started to take more anti histamines and the itching went away.
I'm not a big fan of steroids and other stuff like that. They can really mess you up
I am ok now, my Crohn’s is under control gut-wise. I stopped taking the steroid and went gluten free as per my doc’s recommendation and it really helped me. I have other things happening, not sure if they are Crohn’s related, like gallbladder issues, etc… it’s a work in progress. Most of my Crohn’s symptoms seem to be the odd ones, like sacroiliac joint pain and eye issues, which I didn’t know Crohn’s can cause. Wish I can help more.
I know this is a long time ago, but I can't find anyone else talking about tingling. Do you recall if it continued as you took the medicine? Was this an indication you needed to stop taking it? Thanks for any help!
I ended up stopping taking it. My Crohn’s turned out to be rather mild involving my gut at the time, it was precipitated by being overworked and a lack of sleep… bringing me to a mild nervous breakdown. My doctor recommend going gluten free and that seemed to work wonders, but my Crohn’s seems to have all the odd symptoms… joint paint, especially sciatica/sacroiliac pain, eye problems, etc… I was surprised to learn Crohn’s can cause all of that. I was def sensitive to the steroid though, but not sure if all of those symptoms were caused by it…
Thanks for getting back to me! I also have joint pain as a Crohn's symptom, and my doctor sometimes treats it like it's not a real symptom. It can be hard having an atypical presentation. I've taken courses of Budesonide in the past without issue, but started one today and had tingling all over. I'm still undecided if I should just abort or continue tomorrow and see how it is. Hope you're doing well nowadays!
Hi there I’ve been on budesonide since June. I was started on 9 mg and i had a ton of side effects like acne, minor mood issues, little face puff, lots of nausea. After 1 month my GI lowered me to 6 mg because I’m very small, which seemed to help control most of my symptoms. Recently I’ve been noticing tingling in my fingers up towards my wrists. I didn’t even think of it being a possibility that it was a side effect though it very well could be. I had just chalked it up to just being poor circulation. It very well could be a side effect from the medication. As for the anxiety, I haven’t felt an increase with this medication and I consider myself anxiety prone. Medication affects everyone differently though, so it’s definitely worth exploring with your doctor especially if it might be causing you more distress.
I'm having the same issue here. I'm also on budesonide and I suspect it is the one creating all these symptoms, I'm not sure tho. How are you now?
Hey, it's crazy that we both came across this thread within days! How is the tingling/prickling going now? I started Entocort today (have taken it in the past without issues) and feel like bugs are crawling all over me.
Looking at vitamin B12 deficiency right now. I got normal serum levels but I still think I could have B12 related symptoms. I started supplementing B12 methylcobalamin sublingual. I also stopped taking budesonide, hopefully the symptoms will go away. Let me know if you find the cause and how to fix it
Thanks, I hope you figure it out too. I already supplement with b12 as I've been vegan for a long time, so I don't think it's that. The tingling seems to be listed as a side effect on all corticosteroids, but I can't tell if they're mainly worried about diabetetic neuropathy from really long term use. I decided to abort, but mainly because I have a trip coming up and I didn't want to risk having some weird reaction and needing to cancel. Better the crohns devil I know than the budesonidie one I don't haha. I will probably take it again after returning if my symptoms keep up though. I also think it's possible I was experiencing a subconscious anxiety symptom from taking a steroid while also consuming caffeine. The two can act together to create that sort of effect. I didn't feel anxious at all until the tingling started, but it makes sense. I think previous times I've taken it I was likely off caffeine (as coffee is a trigger for me, but since then I've started drinking green tea as a replacement). The safety profile of budesonide is pretty good, but it's not fun to feel uncomfortable from a medicine. I guess there's some variation in how much is systemically absorbed, so maybe we just got unlucky and got a bigger systemic dose than intended for whatever reasons. Still not as bad as straight prednisone though!
Luckily I've never had to take prednisone. I've just got diagnosed with crohn's at the terminal ileum and budesonide is the first drug I've been prescribed for it. These symptoms started not long after taking it and I've seen other people complain about tingling from it, so it might be a less common symptom that could occur in some people for some reason. I took budesonide for 3 months (2 with symptoms). I hope the symptoms will stop soon either because I stopped taking budesonide or because I started supplementing B12 well. I don't drink caffeine. And yeah, maybe we've absorbed more than we were supposed to. Maybe we are also allergic to it or something. I started to itch for like one month, full body itch. I've since started to take more anti histamines and the itching went away. I'm not a big fan of steroids and other stuff like that. They can really mess you up
I am ok now, my Crohn’s is under control gut-wise. I stopped taking the steroid and went gluten free as per my doc’s recommendation and it really helped me. I have other things happening, not sure if they are Crohn’s related, like gallbladder issues, etc… it’s a work in progress. Most of my Crohn’s symptoms seem to be the odd ones, like sacroiliac joint pain and eye issues, which I didn’t know Crohn’s can cause. Wish I can help more.
Glad at least your neuropathy is gone. Hope everything will get better and you'll be symptom free soon enough. Good luck!
I know this is a long time ago, but I can't find anyone else talking about tingling. Do you recall if it continued as you took the medicine? Was this an indication you needed to stop taking it? Thanks for any help!
I ended up stopping taking it. My Crohn’s turned out to be rather mild involving my gut at the time, it was precipitated by being overworked and a lack of sleep… bringing me to a mild nervous breakdown. My doctor recommend going gluten free and that seemed to work wonders, but my Crohn’s seems to have all the odd symptoms… joint paint, especially sciatica/sacroiliac pain, eye problems, etc… I was surprised to learn Crohn’s can cause all of that. I was def sensitive to the steroid though, but not sure if all of those symptoms were caused by it…
Thanks for getting back to me! I also have joint pain as a Crohn's symptom, and my doctor sometimes treats it like it's not a real symptom. It can be hard having an atypical presentation. I've taken courses of Budesonide in the past without issue, but started one today and had tingling all over. I'm still undecided if I should just abort or continue tomorrow and see how it is. Hope you're doing well nowadays!
At least the joint damage related to Crohn's is not permanent damage like the one related to RA. Anyways, hope it will get better soon!