HealingWell
Search Close Search
☰

Lialda and B12

Support Forums
>
Ulcerative Colitis
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 2/6/2020 2:40 AM (GMT 0)
After my initial diagnosis of UC 2+ years ago, my mild flares have been in remission, although I have since struggled with more IBS symptoms. Occasional diarrhea, but not frequent.

As time has passed, I have been having bizarre waves of symptoms including vertigo, shortness of breath, and most recently pins and needles in my hands and feet. All signs point to B12 deficiency and I’ve been told that my level in the 200’s is enough to be “normal” but also symptomatic. Oddly enough, when I supplement, the pins and needles worsen. Nerve regeneration possibly??

So my question is, does the topical absorption of Lialda have any affect on nutritional absorption that could be making a B12 issue worse? I’ve often wondered this and how the mechanism of Lialda impacts my nutrition, if at all.
Posted 2/6/2020 4:47 AM (GMT 0)
Lialda doesn't release until the terminal ileum, so won't have any impact on absorption of B12.

Have you had other blood testing done? Do you have your blood pressure checked?

q
Posted 2/6/2020 5:24 AM (GMT 0)
Yes, all of my other bloodwork and BP is totally normal. Around the time I was diagnosed with UC, I began suffering waves of mystery symptoms that have never been resolved. I was hoping it was as simple as a B12 thing, but I’m not so sure. For three years I have suffered 2-3 month spells of either hair loss, vertigo, heart palpitations, shortness of breath, bladder problems, and now the neuropathy. I’m 37 and “healthy” so I’m really at a loss. I’ve seen so many doctors. I do find it strange that I didn’t seem to have the pins and needles until I took the B12 so I’m going to eliminate it and see what happens.

Post Edited (chikinnooodle) : 2/5/2020 10:27:13 PM (GMT-7)

Posted 2/6/2020 1:43 PM (GMT 0)
No, mesalamines have nothing to do with nutritional absorption, and nutrient absorption occurs in the small intestine. I've taken b-12 for 8 years since that's how long I've been vegan and have never had an issue.
Posted 2/6/2020 3:41 PM (GMT 0)
I would doubt lialda to be the cause, as others have said.

Sounds like a peripheral neuropathy, which some of us do encounter after time.
Posted 2/6/2020 6:42 PM (GMT 0)
I hope your doctor will send you to at least a neurologist or rheumatologist for further indepth testing.
q
Posted 2/7/2020 12:10 AM (GMT 0)
I started having pins and needles shortly after UC diagnosis after starting mesalamine. Mystery symptoms continued to develop, including tooth and jaw pain, urinary discomfort and genital pain, twitching, numbness in tongue, minor vision problems and very minor balance issues. All of the pains were/are strange, not normal pains but more like being plugged into a light socket. It sounds like a lot but these are mostly minor.

I don't want to discourage you, but I don't believe you will find a cause. I suspect mesalamine plays a part but have not been able to pin down a sure cause after a million tests. Cutting out coffee has helped. This week I am not taking lialda and it has been better but not "cured."
Posted 2/7/2020 1:07 PM (GMT 0)
Why are you not taking Lialda this week?
Posted 2/7/2020 1:38 PM (GMT 0)
I am testing to see if that helps with the nerve issues. Last week was bad enough that it was interfering with day to day activities. So far it has helped, but they come and go so it's hard to say anything for sure. I have started taking detailed notes and will try one week on, one week off.

The problem is I really don't want to step up the medication ladder so not sure what I will do if I discover it was the lialda all along.
Posted 2/7/2020 6:01 PM (GMT 0)
Best of luck, I hope you can get a clear answer. After reading about these nerve issues, it usually points to diabetes or alcohol use. I certainly don’t have diabetes, but I’ve been a 3-4 drinks a day type of person for a long time. Never a daytime drinker, hair of the dog, or severe alcoholism type behavior. I am questioning if this is potentially a cause. Could also be my low B12 or Vitamin D insufficiency, or after reading more, simply a side effect of B12 which I recently started taking. It’s a puzzle! I’m 2 days off the B12 and still tingly.
Posted 2/9/2020 12:25 AM (GMT 0)
I also considered alcohol related neuropathy. I was a heavy partier for about 10 years. Lots of drinking. I also was developing a daily whiskey habit leading up to my first UC flare. Like they say, wisdom is wasted on the old...if I could go back I would have taken better care of myself. That being said, I really feel there is a direct link to UC somehow. My GP speculated that it could be some sort of anxiety like disorder...gut/brain axis issue. Neurologist says fibromyalgia, but he was just throwing a name at it. Says he sees tons of people with these issues and it is hard to put a solid diagnosis on it.

I hope you figure yours out. There was another member, 61impala, who had similar problems to me. I don't think he ever got to the bottom of it. Haven't heard from him in a while. Good luck.

Post Edited (Uniform Charlie) : 2/8/2020 5:30:58 PM (GMT-7)

Posted 2/10/2020 1:54 PM (GMT 0)
Had you stopped or reduced drinking by the time your nerve issues appeared? I had already slowed down before this tingling stuff. I have done more reading and apparently it is quite a common reaction to starting B12 therapy so I’m going to go with that and move forward. I just hope it will abate.
Posted 2/11/2020 5:12 AM (GMT 0)
I was drinking fairly heavily up until a couple weeks before the nerves started acting up since that started shortly after my UC diagnosis. It began as just tingling in one foot. Over time it has progressed to all the other stuff. I would think yours may just be from the B12...let's hope that's all it is.
Posted 2/11/2020 4:35 PM (GMT 0)
I have peripheral neuropathy since Dx of UC. saw neurologist and pain doc. Did nerve conduction tests and a couple small fiber nerve biopsies. That came back positive which started another path with a bunch of blood tests to rule out causes... All did except one pointed to a IGG abnormality. Additional blood, saw one hematologist / oncologist. More blood, urine, repeat visit. dislike his explanation of possible cancer risk unrelated to UC. went elsewhere & saw chief of oncology dept, he spent an hour doing blood, looking under microscope, reviewing/ expanding results, and concluding I'm MGUS. Need 3 month follow-ups.
It it related, he said no too. Seems odd that it came about with the UC.
My GI also says it's not. My PCP says it might be.
I think the jury is out and it may be related.
Anyway, see a neuro for PN & get small fiber biopsies done if you don't have obvious causes.

Post Edited (Dazataz) : 2/11/2020 9:43:23 AM (GMT-7)

Posted 2/11/2020 5:51 PM (GMT 0)
Dazataz, can you explain your symptoms? Did you have continued numbness of the extremities or did it come and go? My neurologist did not do small fiber biopsies. I had an MRI and blood work done. He thought more testing would not bring about any more information. Mine travels and it comes and goes. Originally suspected MS but doesn't think that's it. Not sure neuropathy is the right word for what I have.

I refuse to believe mine is unrelated to either UC or medications for treating UC, although I suppose it's possible.

What is MGUS?
✚ New Topic ✚ Reply