Hi all,
I'm appealing to anyone here with any kind of medical expertise who might advise me on a drug I might self-trial in regards to my peripheral neuropathy--particularly, any potential adverse side effects in relation to my MC.
I am considering taking Pirenzepine, orally. Trials are ongoing for its potential in treating neuropathy. The drug is described as a kind of relation to ranitidine, as follows:
Pirenzepine is a 'selective' antimuscarinic agent which, unlike classic anticholinergic agents, inhibits gastric acid secretion.
Anyone know if such a drug would be contraindicated for MC?
Thank you
Paul
Questions regarding drug safety
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Pebbledash
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I don't claim to have any medical expertise, but I do claim to know a little about MC, and I do have peripheral neuropathy, which is well-controlled by a generic equivalent of the prescription medical food Metanx (I've been taking it for ten years). Here are my thoughts on your proposal:
Ranitidine was heavily promoted as the ultimate treatment for MC when it first came out. It was expensive and many patients spent a lot of money trying to make it work. It didn't work. It has virtually zero efficacy (past the short-term) for MC. Of course it was supposed to treat MC, not peripheral neuropathy. But digestion is already compromised with MC. Any drug that messes with digestion by further inhibiting gastric, pancreatic, liver, or intestinal enzymes (or hormones, or their effects), is likely to further limit digestion (because of reduced acid, etc.). That action may or may not have a direct effect on MC, but if it does have an effect, that effect is more likely to be averse than beneficial (as your own experience with MC should tell you).
Peripheral neuropathy is not usually the result of drug use (except in the case of the side effects of fluoroquinolone antibiotics) and I have grave doubts about the capacity of any drug that's claimed to resolve it. Peripheral neuropathy is caused by certain chronic vitamin and/or mineral deficiencies, and if resolving those deficiencies does not at least partially resolve the symptoms, then the nerve damage is probably permanent, and cannot be undone. But that's just my opinion, based on experience (mine and others). If anyone claims otherwise, I'd be interested in seeing the proof of concept.
That said, the only way we can ever prove whether or not an idea will work for us, is by trying it. MC patients often find themselves playing the role of guinea pigs. Best of luck if you decide to try it.
Tex
Ranitidine was heavily promoted as the ultimate treatment for MC when it first came out. It was expensive and many patients spent a lot of money trying to make it work. It didn't work. It has virtually zero efficacy (past the short-term) for MC. Of course it was supposed to treat MC, not peripheral neuropathy. But digestion is already compromised with MC. Any drug that messes with digestion by further inhibiting gastric, pancreatic, liver, or intestinal enzymes (or hormones, or their effects), is likely to further limit digestion (because of reduced acid, etc.). That action may or may not have a direct effect on MC, but if it does have an effect, that effect is more likely to be averse than beneficial (as your own experience with MC should tell you).
Peripheral neuropathy is not usually the result of drug use (except in the case of the side effects of fluoroquinolone antibiotics) and I have grave doubts about the capacity of any drug that's claimed to resolve it. Peripheral neuropathy is caused by certain chronic vitamin and/or mineral deficiencies, and if resolving those deficiencies does not at least partially resolve the symptoms, then the nerve damage is probably permanent, and cannot be undone. But that's just my opinion, based on experience (mine and others). If anyone claims otherwise, I'd be interested in seeing the proof of concept.
That said, the only way we can ever prove whether or not an idea will work for us, is by trying it. MC patients often find themselves playing the role of guinea pigs. Best of luck if you decide to try it.
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
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Pebbledash
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Thanks Tex. I thought as much.
My neuropathy is now more worrisome to me that the MC in that there are no treatments for the former. I have to balance the two conditions against each other. That said, I am now inclined to trial pirenzepine, but cautiously, while on a maintenance dose of Budesonide.
I'll update if I go ahead with my "trial."
Cheers
Paul
PS I don't think years of untreated chronic inflammation from my MC and celiacs did me any good at all, and not impossible that it triggered the neuropathy.
My neuropathy is now more worrisome to me that the MC in that there are no treatments for the former. I have to balance the two conditions against each other. That said, I am now inclined to trial pirenzepine, but cautiously, while on a maintenance dose of Budesonide.
I'll update if I go ahead with my "trial."
Cheers
Paul
PS I don't think years of untreated chronic inflammation from my MC and celiacs did me any good at all, and not impossible that it triggered the neuropathy.
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Gabes-Apg
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My only hesitation is that medications like that block acid production - so this will impact nutrient absorption etc'
where as medications like cholestryamine 'soak up' excess bile so when taken at the right time will reduce bile but not stop it
there is the concern with this type of medication that in trying to help one issue, you can cause other ones.
where as treating the root cause of the peripheral neuropathy ( ie Active B's etc) is less likely to cause other issues
where as medications like cholestryamine 'soak up' excess bile so when taken at the right time will reduce bile but not stop it
there is the concern with this type of medication that in trying to help one issue, you can cause other ones.
where as treating the root cause of the peripheral neuropathy ( ie Active B's etc) is less likely to cause other issues
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
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Pebbledash
- Gentoo Penguin
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Gabes,
I had cholestryamine in mind too, wondering if the mechanisms were somewhat similar (I just don't know enough biology). I have been on Methyl Guard Plus for months. Unfortunately, idiopathic polyneuropathy is very hard to deal with. And I am ready to trial pretty much anything in order to see if it might help.
Cheers
Paul
I had cholestryamine in mind too, wondering if the mechanisms were somewhat similar (I just don't know enough biology). I have been on Methyl Guard Plus for months. Unfortunately, idiopathic polyneuropathy is very hard to deal with. And I am ready to trial pretty much anything in order to see if it might help.
Cheers
Paul
I'm convinced that was the cause of my PN, since I don't have diabetes.Paul wrote:PS I don't think years of untreated chronic inflammation from my MC and celiacs did me any good at all, and not impossible that it triggered the neuropathy.
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
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Gabes-Apg
- Emperor Penguin
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Paul
it took me over 6 months to resolve some of my nutrient deficiencies
and if you are low in stomach acid, (due to low B6 and zinc) you may not be absorbing all the nutrients from the tablets you are taking
it took me over 6 months to resolve some of my nutrient deficiencies
and if you are low in stomach acid, (due to low B6 and zinc) you may not be absorbing all the nutrients from the tablets you are taking
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
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Gabes-Apg
- Emperor Penguin
- Posts: 8332
- Joined: Mon Dec 21, 2009 3:12 pm
- Location: Hunter Valley NSW Australia
Checking my nutrient textbook - there are some other key nutrients that you may be lacking - (that deficiency in is linked to peripheral neuropathy)
other than B12, the body needs B1, carnitine, R-lipoic acid
of note methyl guard plus does not have B1
Red meat is a good source of carnitine
beef, lamb and pork are good (MC safe) sources of B1
heart, liver, potatoes, spinach are the best options for R-Lipoic Acid
it might be worth considering some diet modifications to include items that have these ingredients you may not need to take the medication.
other than B12, the body needs B1, carnitine, R-lipoic acid
of note methyl guard plus does not have B1
Red meat is a good source of carnitine
beef, lamb and pork are good (MC safe) sources of B1
heart, liver, potatoes, spinach are the best options for R-Lipoic Acid
it might be worth considering some diet modifications to include items that have these ingredients you may not need to take the medication.
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama