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IBDUCTeen03/2016
New Member


Date Joined Sep 2017
Total Posts : 10
   Posted 2/12/2018 10:55 AM (GMT -7)   
I wasn't able to find any recent posts regarding this, but has anyone experienced hand numbness? My son has been complaining about it the last couple of days. He is currently only on Lialda, with other supplements. Wondering if it is "just" from UC and if there are any treatments or ways to cope with it. Also, if it will get worse as he gets older. Thanks

quincy
Elite Member


Date Joined May 2003
Total Posts : 30102
   Posted 2/12/2018 11:03 AM (GMT -7)   
Numb hands are usually an impingement of some kind, either from the neck elbow or wrist. As he had nerve conduction tests done?

q
*Heather* I give suggestions, do with them what you will.
Status: ...Asacol 3 @ 2x daily; Salofalk enema @ 3rd night (nightly/ flares, tapered/maintenance)
~diagnosed January 1989 UC (proctosigmoiditis)
~Bentylol 20mg as needed; Zantac 150mg; Pulmicort/Airomir (asthma); Effexor XR 75mg (depression); Rosuvastatin 10mg (cholesterol); Telemesartin 80mg / Amlodipine 5mg (BP)
~vitamins/minerals/supplements; Probiotics....(RenewLife Ultimate Flora Critical Care + Genuine Health Advanced Gut Health 15 billion @ bedtime)
~Metamucil capsules 6 @ 2x daily with meals; Vitamin D 4500 IU
~URSO 500mg @ 2x daily for Primary Biliary Cholangitis
"TREAT (FROM)BOTH ENDS" worth it !!

iPoop
Forum Moderator


Date Joined Aug 2012
Total Posts : 11618
   Posted 2/12/2018 11:13 AM (GMT -7)   
Numb/tingling hands can also be a neuropathy. We can get a neuropathy as secondary to UC, or related to type ii diabetes (any recent bloodwork with blood/sugar levels?).
Moderator Ulcerative Colitis
John
, 39, UC Proctosigmoiditis
Rx: Remicade @5mgs/kg/6wks; daily 75mgs 6MP, 4.8g generic-Lialda, and rowasa

Boss makes a dollar while I make a dime and that's why I poop on company-time...

ks1905
Veteran Member


Date Joined Sep 2005
Total Posts : 4997
   Posted 2/12/2018 1:01 PM (GMT -7)   
I would get them from steroids. They would go away after the steroids got out of my system.
Keith

DX'd with Severe Pancolitis June 2005
Previous Meds: 5ASAs, Predisone, 6-MP. Remicade, Humira, Simponi, Cimzia & Cyclosporine
3-step J-Pouch surgery: 2013 & 2014

Current Condition: Chronic Pouchitis -- Not as bad as I thought it would be
Current Meds: Stelara
Total Hip Replacement: 12/16 -- Thanks Prednisone!!!
www.healingwell.com/community/default.aspx?f=38&m=3755226

Uniform Charlie
Veteran Member


Date Joined Jul 2015
Total Posts : 591
   Posted 2/12/2018 2:08 PM (GMT -7)   
I get traveling numbness and odd nerve pains. It comes and goes. Never have gotten to the bottom of it. My PCP thinks my messed up gut is sending faulty fight/flight signals to my brain or it is a chemical imbalance (many mood regulating chemicals in the gut) causing physical anxiety symptoms. She also called it peripheral neuropathy but I don't think that was an official diagnosis, just an educated guess. I saw a neurologist who did a bunch of tests but never really put a name on it and just said something is irritating my nerves. Said he sees a lot of people with similar symptoms (who don't have IBD) but he and his colleagues don't know what it is.

Others have shared similar experiences. I also take Lialda, actually the generic version now, but could not prove mesalamine to be the culprit. Every time I tried to stop, I would begin getting IBD symptoms. I think I'd need a good 4 months without the Lialda, as some others who've had a reaction have reported it taking that long for the neurological symptoms to subside.

I can say for sure that the first time I ever experienced anything like this was when I began treatment for my first flare with colozal. Not sure if it was the UC or the meds. If it is the meds, I don't have any choice but to step up to a more powerful medication, which I am not ready to do. If you get a doctor's opinion I'd love to know what they say.
Diagnosed Proctosigmoiditis (UC) February 2015
Current Meds: Lialda 1.2gm 2x daily, duloxetine, rowasa as needed, Curcumin, VSL3 occasionally, One a Day Multi-Vitamin
Did SCD for about 2 years but lost willpower. Want to get back to it at some point.

IBDUCTeen03/2016
New Member


Date Joined Sep 2017
Total Posts : 10
   Posted 2/13/2018 2:01 PM (GMT -7)   
Thanks for the responses. He isnt on any steroids and hasnt had any nerve testing done. His last bloodwork was either in August or October and he was fine. His blood work has actually been pretty good after the initial diagnosis. He mentioned last night that the numbness is also in other parts of his body like his chest. I'm going to give it a couple days and if it continues or comes back up (which im sure it will), I will contact his dr and post an update.

quincy
Elite Member


Date Joined May 2003
Total Posts : 30102
   Posted 2/13/2018 2:07 PM (GMT -7)   
Don't wait if it's around the chest.....is there any discomfort as he's breathing or moving?

q
*Heather* I give suggestions, do with them what you will.
Status: ...Asacol 3 @ 2x daily; Salofalk enema @ 3rd night (nightly/ flares, tapered/maintenance)
~diagnosed January 1989 UC (proctosigmoiditis)
~Bentylol 20mg as needed; Zantac 150mg; Pulmicort/Airomir (asthma); Effexor XR 75mg (depression); Rosuvastatin 10mg (cholesterol); Telemesartin 80mg / Amlodipine 5mg (BP)
~vitamins/minerals/supplements; Probiotics....(RenewLife Ultimate Flora Critical Care + Genuine Health Advanced Gut Health 15 billion @ bedtime)
~Metamucil capsules 6 @ 2x daily with meals; Vitamin D 4500 IU
~URSO 500mg @ 2x daily for Primary Biliary Cholangitis
"TREAT (FROM)BOTH ENDS" worth it !!

Mak37
Regular Member


Date Joined Jan 2018
Total Posts : 200
   Posted 2/13/2018 7:27 PM (GMT -7)   
When I got numb hands it was because I was super low on b12, when I started taking b12 vitamins it went away!
Dx with severe pancolitis with appearance of Crohn’s at 7 but actually had it whole life
After failing humira and not responding to IV steroids had to get my colon removed on January 27, 2018!! Still deciding on permanent or j pouch #nocolonstillrollin

quincy
Elite Member


Date Joined May 2003
Total Posts : 30102
   Posted 2/13/2018 8:16 PM (GMT -7)   
On ths same track, i suggest both b12 and vitamin d be cheched asap.

q
*Heather* I give suggestions, do with them what you will.
Status: ...Asacol 3 @ 2x daily; Salofalk enema @ 3rd night (nightly/ flares, tapered/maintenance)
~diagnosed January 1989 UC (proctosigmoiditis)
~Bentylol 20mg as needed; Zantac 150mg; Pulmicort/Airomir (asthma); Effexor XR 75mg (depression); Rosuvastatin 10mg (cholesterol); Telemesartin 80mg / Amlodipine 5mg (BP)
~vitamins/minerals/supplements; Probiotics....(RenewLife Ultimate Flora Critical Care + Genuine Health Advanced Gut Health 15 billion @ bedtime)
~Metamucil capsules 6 @ 2x daily with meals; Vitamin D 4500 IU
~URSO 500mg @ 2x daily for Primary Biliary Cholangitis
"TREAT (FROM)BOTH ENDS" worth it !!

suchatravesty
Regular Member


Date Joined Dec 2017
Total Posts : 65
   Posted 2/13/2018 11:21 PM (GMT -7)   
Just a thought.. in another post you talked about your son's anxiety and how that might also be related to his stomachaches even though his UC appears to be in control. Numbness is also often associated with a current high level of anxiety (google it). I know when I start working myself up into a possible panic attack, my limbs start feeling numb and tingly. If I end up in a full-blown panic attack, it can last a good day or two. When he complains of numbness, I'd ask him how he's feeling emotionally and if he is experiencing any heightened anxiety at the moment.
Left-sided colitis dx on 12/28/17, with concurrent onset of chronic hives & food allergies (wheat, peppers).

4.8g Lialda(caused migraines) Budesonide 9mg
Saccharomyces Boulardii 2x/day
40mg Zyrtec, 300mg Zantac & Singular for the hives
20mg citolopram for depression
500mg metaformin for PCOS

suzy-q
Regular Member


Date Joined Sep 2015
Total Posts : 197
   Posted 2/14/2018 10:30 AM (GMT -7)   
My husband developed numbness while he had UC. Tingling/numb feet -- a few spots on the leg - the face - and the hands. it became very apparent as he weaned off of steroids. We ended up seeing a neurologist. Vitamin levels are definitely something a neurologist will look at -- I would be cautious about self-medicating with them. Turns out my husband has high B6 -- may or may not be contributing to the numbness.

Neurologist was able to rule out every possible disease in the world that might cause numbness, which was a big relief. And so he is learning to live with it -- it fortunately isn't debilitating. Sometimes these things resolve over time.

You may want to try to get a neurologist appointment now, because it could take several months and you can always cancel if you change your mind.
Spouse diagnosed with UC in 2013. Remicade, humira, Entyvio did not work. Only thing that worked was prednisone. March 2016 started Xeljanz. In remission within 2 months. Working with endocrinologist to get off prednisone, and neurologist to deal with neuropathy in feet that appeared with prednisone taper. Still tapering off prednisone .5 mg every 4 weeks. Developed osteoporosis due to steroids

quincy
Elite Member


Date Joined May 2003
Total Posts : 30102
   Posted 2/14/2018 11:22 AM (GMT -7)   
Anxiety numbness is in the moment, not continually.
Please get him referred.

How old is he?

q
*Heather* I give suggestions, do with them what you will.
Status: ...Asacol 3 @ 2x daily; Salofalk enema @ 3rd night (nightly/ flares, tapered/maintenance)
~diagnosed January 1989 UC (proctosigmoiditis)
~Bentylol 20mg as needed; Zantac 150mg; Pulmicort/Airomir (asthma); Effexor XR 75mg (depression); Rosuvastatin 10mg (cholesterol); Telemesartin 80mg / Amlodipine 5mg (BP)
~vitamins/minerals/supplements; Probiotics....(RenewLife Ultimate Flora Critical Care + Genuine Health Advanced Gut Health 15 billion @ bedtime)
~Metamucil capsules 6 @ 2x daily with meals; Vitamin D 4500 IU
~URSO 500mg @ 2x daily for Primary Biliary Cholangitis
"TREAT (FROM)BOTH ENDS" worth it !!

Connor77
Regular Member


Date Joined Jul 2016
Total Posts : 488
   Posted 2/14/2018 1:55 PM (GMT -7)   
I got neuropathy in my hands and feet during my first flare because I was deficient in B12, folate and B vitamins. Ask his doctor to prescribe methylB12 2000mg, methylfolate 1mg, and B complex forte. Give him half those doses, once per week. These can all be given by injections with a simple prescription written to a compounding pharmacy. Alternatively you could give them to him sublingually but absorption would be dubious. Injection is better.

Another less common reason for neuropathy is potassium deficiency, which can happen if there's a lot of diarrhea. People underestimate this one. My blood work can show normal but if my potassium drops below 4 (and 4 is considered part of normal range) I start getting symptoms.

5ASAs can cause neuropathy but it's rare.

Just thought I'd mention... if it's numbness on just one side, could be something structural like a pinched nerve, especially in the neck. Did he wake up with a sore neck at all? If it's both sides then it's most likely a nutrient deficiency or drug side effect.
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