Strange Symptom-Anyone else?

[jessica329]

I started on Entocort for LC on 10/2/12. 9mg for 3 days, 6 mg for 3 days and now 3 mg from now until my next doc appointment on 11/6/12. I get this tingling sensation on the left side of my stomach (under my ribs). It reminds me of the sensation of the electrical massage machine used in Physical Therapy after my knee surgery. I can usually strech and massage to make it go away but it happens 3-6x a day for no apparent reason. Started after I dumped down to 3mg of Entocort. Anyone else? Thoughts?

[Sheila]

I'm taking one entocort every other day as well but only took one a day from the start. I haven't experienced that sensation but I'm sure someone has.

Sheila W

[grannyh]

I took entocort for years and never had that feeling. Sorry not to be able to help in that area.
grannyh

[PJ]

Sorry Jessica, I am also on budesonide (down to 2) and the only noticeable side effects for me have been higher blood sugars and fatigue. Those side effects are expected from this drug, however. I wouldn't hesitate to check out the tingling sensation from your GI doc.

Best,

Pam

[carolm]

Jessica,
I was on Budesonide 9mg for 6 weeks, then 6 mg for about 6 weeks, then 3mg a month, then went every other day for another couple of weeks. I did not have the sensation you are describing. My only side effect was abdominal cramping that let up every time I reduced the dose.

I wonder if it's unrelated to taking Budesonide/Entocort? I'm sorry I can't help and can't even make a good educated guess as to what that sensation is that you are dealing with.

Carol

[tex]

Jessica,

Paresthesia (tingling sensation or numbness of the skin) is commonly associated with MC in cases where reactions have continued long enough to cause a malabsorption problem. It's caused by a deficiency of vitamin B-12. It usually presents at the extremities (hands, fingers, feet, toes), but a few members here have noticed the symptoms in other areas of their body, such as on their belly or thighs, etc. I'm not sure if a similar sensation can be associated with an internal organ, but I would guess that it could be possible.

Have you ever had your B-12 level checked? Many of us take a B-12 supplement, because of the relatively high risk of developing a deficiency associated with this disease. Since malabsorption is the usual cause of the problem, it does little good to take ordinary B-12 supplelments, which are based on cyanocobalamin (an inactive form of B-12). Cyanocobalamin has to be converted into methylcobalamine inside the body, before it can be utilized by the body (and some people may not be capable of converting it effectively during periods of illness). Therefore, it's much more effective to take a sublingual lozenge that uses methylcobalamin (the active form of B-12) when taking a B-12 supplement because of a malabsorption problem. Sublingual lozenges dissolve under the tongue and the methylcobalamin goes straight into the bloodstream, thereby bypassing the malabsorption problem in the intestines.

You might be interested in the experiences of another member, about 5 years ago:

Tex, thank you for the links they are of tremendous help to me. I can see now the value of getting some clinical testing done. As I stated RA runs deeply in my family (maternal and paternal) many cases so severe that they became crippled by middle age sometimes earlier, I had a cousin in Oregon who has been wheelchair bound in her late 20's she passed away at 46 this past year. I myself have not been tested but have had mild (severe to me) joint pain the last 1 1/2 years, also in the past year just prior to MC getting hold of me I had visited the doctor due to pin's and needle feeling, generally starts around my mid-section, spreading downward to my thighs and upward to my chest, not in the hands or feet, my doctor has ruled out diabetes, but has been stumped to diagnose this unkown nueropathy.

That's from his first post on this page:

http://www.perskyfarms.com/phpBB2/viewt ... s&start=15

Of course, I recommended a sublingual B-12 supplement. From his last post in that thread:

Tex,
Well I went down to my local health foods market, he and I went over what "he" had available, and what he had confidence in the brand and product. I purchased two things that he recommended, one a sublingual form of B-12 with folate, and the other a whole food supplement which is essentially vitamins in lower doses from natural sources, both products are allergen free. I started taking the B-12 alone, I wanted to be certain in the results and I am learning to slow my pace a little, starting and stopping things one at a time and keeping track of the results. Today was day 6, since I started on B-12 I have not experienced a single episode of the dreaded "pins and needles". In that time I have logged close to 20 miles of walking and a full days fishing, my symptoms have generally come on with just the slightest bit of physical activity, not a single episode-wow it feels great. Tex I thank you, and my two labs thank you even more. The boys have been dying of boredome during what is usually a very active time of the year for them, duck seaon and pheasant season, not a single bird in the freezer yet for Thanksgiving, by now there is usually a dozen or so, that should change in the next couple of days.

Tex

[jessica329]

Thank you so much. I have not bothered with a vitamin for that reason and the entocort blocking absorption. I know how important it is to make sure you do not become deficient with this disease but have been at a loss on what to do.