Has anyone experienced low B12 levels even while on biologics
Although I’ve been on Simponi Aria for my PsA for more than a year now and overall I feel better but there are times that some symptoms come back and from time to time my family doctor has put me on B12 shots, now my blood work came back and is low on B12 and for a while my peripheral neuropathy has gotten worse, even my face is tingling, skin feels like I have a mild sunburn and a new symptom that I never had is I get flashes of hot spots on my skin, random areas on my body that feel like I got close to a heat source, achy joints, pin and needles that just pop up anywhere, sore neck, constant but mild ache on the back of my head, stiff neck random flashes of light at the bottom of my right eye as well as dry and itchy and other symptoms that just come and go, although only two other items on my blood work came one high and one low the rest was normal and I keep looking at some articles that suggest that all of this symptoms have to do with just having low B12, I’m starting to wander if I have another autoimmune disorder hiding behind all this or its just a flare up.
, oh gosh that sounds uncomfortable. Are the doctors running some tests to see if there is an underlying cause? I am sharing a forum with you about simponi, I hope you will find this helpful too: https://psoriatic-arthritis.com/forums/simponi-aria-infusion.
Do these spells last for very long? Are the symptoms similar to previous flares?
We look forward to hearing from you,
Warmly , Clair ( Team Member)ClairG, other that the usual every three month blood tests I only got an X-ray for my neck, but on my next appointment this are the questions I’m asking, the peripheral neuropathy on my feet, hands and face have become a 24/7 but the intensity worsen as the day goes by, the pain on my neck, the dry itchy eyes are also becoming more permanent, the others just pop up at random and although the pain isn’t too intense, it just adds to the rest of the other symptoms, making my fatigue worse which also makes my insomnia worse too.
It sure sounds like you are ready for your next appointment. I am so glad. How are you managing at the moment?
Do you find that the change of seasons makes a big difference?
Warmly, Clair ( Team Member), I just got my infusion last week, but one weird thing happened was that a few nights ago I couldn’t sleep and my entire body felt like I was in front of a heating lamp that went on and off and for a few moments I thought I may had a fever, my appointment with my rheumatologist’s nurse is next week which I have written all the latest symptoms, most are old symptoms that just came back and a few that are new, I just deal with them the best I can and after five years dealing with this I know that when I’m dead exhausted but I can’t sleep I just have to micro nap for an hour or until I can’t do it anymore and then I have to get back up and yawn the rest of the day, I’m not sure if I can feel the changes of this season but I can sure feel it during the fall and winter.
Hi
. I stay with low B12 levels. I find your post interesting. I have tingling in my feet that has just started. I have other things going on as well. Now I am wondering if it is the B12 levels. I am on shots for B12 once a month every month. Has your doctor talked about keeping you on B12 shots? Flares are a big issue with psoriatic arthritis. If it continues you need to bring this up with your doctor. Vickie, Team Member Vickie Wilkerson, It’s one of the questions I have for my arthritis doctor and his nurse, it was my family doctor that had me on B12 shots last year and the year before but I feel that at this point it may be required as a permanent treatment, but my feet feel like I’m carrying a heavy load while walking barefoot on hot gravel and my ankles are hot and very sore at the end of the day, specially the days I have to go out or days that I have to be on my feet longer, then the other random symptoms come like a sucker punch, may not hurt much but it will leave me limping for a little while, sadly peripheral neuropathy is one symptom that Simponi Aria never took away, the others diminished and some went away for a while.
Is she thinking the B12, and C has something to do with your foot pain or fibromyalgia? One thing I do know about PsA just when you think you got it all figured out there always seems to be something new. Hopefully they can get it all lined out pretty quickly for you. Vickie, Team Member , she thinks that it’s possible that B12 and C may have something to do with the symptoms but she didn’t mention anything about Fibromyalgia only gave me the info to read but she wants to make sure by me taking those vitamins (shots and pills) and then reassess it on my next appointment, for the moment it feels like Simponi has lost its grip on the PsA and symptoms are just getting worse, gradually but still getting worse, insomnia, fatigue, joints pain that just pops up at the worst possible times and the list goes on, all got worse after I had a mild case of shingles and a mistery bug a couple weeks after the shingles, my family doctor tested me for the usual suspects (COVID, and flu and others that I don’t recall) but all came negative.
My rheumatologist has mentioned before fibromyalgia, paresthesia and peripheral neuropathy and I got some nerve test done but aside from finding that I have carpal tunnel on both wrists the test came inconclusive on neuropathy on my feet and said that a biopsy test usually also shows inconclusive results so we opted out of it.
