Sad and scared--tingling

[Pebbledash]

Update (and advice appreciated for anyone who knows anything about paresthesia):

• Had a phone consultation with neurologist yesterday—convinced I do not have MS. She says I likely have polyneuropathy but has nothing else to add right now—just to wait and see (and, given how exhausted I am, I am not minded to rush any more testing).
• Tummy has settled with Imodium and Pepto B, until I pick up cholestyramine next week to try out.

The paresthesia is bothering me. I have had it for three months, out of the blue, starting in left hand during weight training, moving to both feet and legs, mainly left-sided.

The symptoms started during a burst of exercise—including stretching, aerobic, and weights. And daily cold showers. I was feeling positive after a terrible two years. I was on budesonide for the first time and that had turned my life around.

That said, I have noted that the symptoms do come on most when I am most stressed—ie standing up and teaching/talking to colleagues, I feel the tingling go crazy in my feet.

I have arranged to see PCP next week to take this forward. Does anyone here have any experience in this area? Any further advice on where I might look for answers, what I might try?

BTW, have also ordered Methyl Guard Plus in case my body isn't absorbing the B12 (labs seemed good though).

Thank you again for your patience and counsel
Paul

[tex]

Mine doesn't seem to be associated with stress.

I note that it's on the budesonide label (under nervous system side effects), but most physiological side effects associated with budesonide resolve when the drug is discontinued. I'm not sure that all neurological side effects resolve in every case, however. You might have to ask a neurologist about that. Of course, they might not know the answer if it hasn't been published in a prestigious medical journal. I've asked quite a few neurologists about the connection between untreated gluten sensitivity and peripheral neuropathy for example, and they've all denied that it even exists. It certainly does exist though, because it is indeed documented in the medical literature as far back as over 25 years ago.

Nervous system

Very common (10% or more): Headache (up to 28%)
Common (1% to 10%): Dizziness
Uncommon (0.1% to 1%): Disturbance of smell
Very rare (less than 0.01%): Pseudotumor cerebri (including papilledema)
Frequency not reported: Hyperkinesia, paresthesia, tremor, somnolence
Postmarketing reports: Benign intracranial hypertension

Budesonide Side Effects

PERIPHERAL NEUROPATHY

Peripheral neuropathy is the second commonest manifestation of gluten sensitivity. Prospective screening of 101 patients with idiopathic peripheral neuropathy has shown the prevalence of gluten sensitivity to be 40% (unpublished data). The commonest type of peripheral neuropathy we encountered is sensorimotor axonal (26) followed by mononeuropathy multiplex (15), pure motor neuropathy (10), small fibre neuropathy (four) and mixed axonal and demyelinating (two). The neuropathy is usually chronic and of gradual progression. Patients with a pure motor neuropathy may progress to involvement of sensory fibres.

Gluten sensitivity as a neurological illness

Tex

[Tor]

When it comes to gluten and peripeherial neuropathy, it seems to be well documented by now. But most of the documentation comes from the neurologist Hadjivassilou and the gastroenterologist Sanders. Anyway, they seem to be producing very strong evidence like this more recent research article: https://www.nature.com/articles/ajg2015434.

Earlier in this thread I pointed to a recent article by Lambert and Vojdani (https://www.researchgate.net/profile/Ja ... cimens.pdf). This article documents cross reactivity/molecular mimicry between antibodies to more food proteins than gluten (casein and others) and autoantibodies to nervous tissue (anti myelin and more). A lot of people in this group have experienced that microscopic colitis is linked to multiple food sensitivities, so there might very well be a connection there.

The reason why I've been interested in this topic is that I have thin fibre peripheral polyneuropathy in my feet. I have been to a couple of neurologists, and they were unable to measure any sensory loss, it's purely painful. The main trigger is cold, but it often presents while eating. It debuted 3 years ago at the end of a 3 month gluten (and coffee!) provocation period, but did not immidiately respond to gluten free diet. The first winter was bad, and I had it for most of the time while I was awake. The nights were ok, but then it started again while eating breakfast. The neurologist attributed it to my diabetes 1 - OR my general talent for autoimmunity. My diabetes is very well regulated, so I'm betting on the last option.

For the last 2 years the symptons have slowly waned. They're still there, but not all days, and not all of the day. My MC has been in near total remission for the last year after quitting both gluten, coffee, tea and aspertame.

Both celiac disease and microscopic colitis are linked to multiple food sensitivities. My biggest culprits was food/dring I consumed every day. I had to quit all three of these to see results, and I had to quit them for some time.

Beeing a celiac, Pebbledash, your autoimmune genetic make up is probly a lot like mine. My sister and daughter are celiacs, and probably my mother as well. I think you should aim at getting your MC and possible food sensitivities under control. This is something you can succeed at, and it might be profitable for your neuropathy as well.

[Pebbledash]

Thanks Tex and Tor.

This gives me hope:

For the last 2 years the symptons have slowly waned.

My tingling definitely gets worse with stress--for example, when teaching or conversing with stressful work colleagues. Tends to disappear during the night. That said, it first appeared when I was on a relative roll--positive about my health, exercising, stretching, taking cold showers, and reaping benefits of Budesonide.

Gastro says that paresthesia as a side-effect of Budesonide is very low (5%) but doesn't dismiss it completely. That said, I have been off the Budesonide for 10 days now.

Although research correlates Celiacs with neuropathy, but both my neurologist and one from University of Chicago Center for Celiac Disease dismisses it in my case as I have been off gluten for 7 years--as you suggest Tor, perhaps there is another reaction going on.

[Pebbledash]

Update and question:

The paresthesia continues (but it hasn't worsened, thankfully).

I have been off Budesonide for three weeks, so I seriously doubt it was a side effect of that.

Question:

I am about to take my second course of Budesonide. The gastro has prescribed the same dosage and course as last time--8 weeks at 3 capsules for 4 weeks, 2 for 2 weeks, and 1 for 2 weeks.

Since this is my second course, and since it worked so effectively before, is there a case for me to start and proceed on a lower dosage? Even the first time around I felt that 3 a day seemed like overkill, as it worked so well.

Thank you
Paul

[Tor]

I think it`s a general rule to use «the lowest effective dose». If 2 capsules (or 1) works, I can`t see any reason to use 3 capsules. I also think a low dose (one or two capsules) can be used for a longer period of time if necessary. But you should talk to your doctor about it.

— Tor

[Pebbledash]

Thanks, Tor.

Anyone else who has thoughts on this, I would be grateful to hear from you: thus far, my consultant is insistent on the 3 a day dosage (I would rather go less).

[tex]

I agree that not everyone needs the same dose of any medication. It's best to use enough, but no more than necessary. Medication doses are determined based on average responses of average size people. One-size-fits-all dosing is not likely to work for everyone. That said, any corticosteroid will be less effective each time you stop using it and then restart. This is substantiated by research. Eventually, if this cycle is repeated enough times, it will no longer be effective. Continuing use of a corticosteroid does not seem to alter this phenomenon, only completely stopping and restarting treatments.

Tex

[Pebbledash]

I messaged consultant and she is insistent on keeping the same dose--that is, starting the first four weeks with 3 a day.

When I took Budesonide first time around, I found that I improved so rapidly that 3 a day seemed like over-kill.

Do you think it would be okay if I just started with 2 a day, but took the course for a longer period of time?

[tex]

If it were me I would start with 3 per day (because corticosteroids work best by starting with a full dose) and then I would quickly drop the dose to 2 in a day or so, or as soon as I noticed any symptoms of constipation. I would let my body be my guide as to when to drop to 1 per day, then 1 every other day, etc. as I was tapering the dose. You should lower the dose at the first signs of constipation. Not following that rule can lead to a serious constipation issue in most cases.

Tex

[Pebbledash]

Cheers, Tex. That sounds like very realistic advice, a compromise, if you like!

Much appreciated.

Paul

[brandy]

Paul, I second everything Tex said and I was an entocort user. I would start with 3 and have the budesonide "kick in." You may be on the 3 a very short period of time. When you get solid stool "norman" go down to 2. This may be as little as several days going by your prior history.

Not telling you to ignore your doc but 8 weeks at 3 capsules is way too long for almost all MCers. A small percentage will be at that dose but that would be the exception. I was on 3 capsules for 2 weeks.

Listen to your body on your "step downs."

[brandy]

Paul,

In line with what Tor mentioned about food sensitivities----are you eating many products that have ingredient lists? GF bread, GF crackers, GF pasta, alternative ice cream etc? I consistently do better when I eat nothing that has ingredient lists. I have severe brain reactions to Enjoy LIfe Cookies and coconut milk ice cream. I get about a 10 hour anxiety and agitation reaction to these products.

Be strong. The first two years of MC were very tough for me. I had a lot of weird symptoms that took me months to get to the bottom of. It was very frustrating going to doctors at this time. I remember cycling through PCP, gastro, and gyn P.A. and then the docs wanted to send me to neurologist as my symptoms were so wacky.

Mom is celiac and I have MC. I agree with Tex in his comments that celiac is a walk in the park compared to MC. Mom and I eat radically different diets.

[Pebbledash]

Paul, I second everything Tex said and I was an entocort user. I would start with 3 and have the budesonide "kick in." You may be on the 3 a very short period of time. When you get solid stool "norman" go down to 2. This may be as little as several days going by your prior history.

Thanks, Brandy. This is how my body "felt" first time around--I would have preferred to have tapered the dose after a few days.

[bttory]

Pebbledash