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-   -   Chlorphenamine/ Piriton antihistamine tablets for small fibre neuropathy (https://www.neurotalk.org/peripheral-neuropathy/231818-chlorphenamine-piriton-antihistamine-tablets-fibre-neuropathy.html)

MAT52 01-30-2016 03:24 PM

Chlorphenamine/ Piriton antihistamine tablets for small fibre neuropathy
 
I happened upon a great discovery for myself. I started taking these antihistamines in an effort to find something that would improve my sleep - other than highly addictive sleeping pills or the antidepressant and anticonvulsant families. I had severe tolerance issues with three of these and not prepared to risk any more

I often used to take antihistamines regularly for severe eczema and allergies and had some left over unopened from a 2014 prescription. So I thought it worth a try at least as no contraindications with my BP meds - not strong drugs and I've tolerated them before.

Wonder of wonders it seems to help a lot with my neuro and vestibular symptoms! It may just be because of the sedative component of course but even when I wake in the early hours I don't have the burning in my hands half as badly. I just wonder if anyone else knows about this? Hoping it might help others perhaps. Here is what a friend from a lupus forum found out for me.

"Apparently
"Limited clinical evidence shows that [chlorphenamine] is comparable to several antidepressant medications in its ability to inhibit the reuptake of serotonin and also norepinephrine (noradrenaline)."

and

"There are several different classes of medications commonly used to treat neuropathic pain. These include antidepressants, anticonvulsants, opioids, and topical treatments. Tricyclic antidepressants (TCAs) consistently are recommended as first tier drugs across all guidelines ... TCAs consistently were selected as first-tier choices based on their efficacy and other factors such as cost and availability. Their mechanism of action is inhibition of serotonin and norepinephrine reuptake."

Which looks like the link to me.

If there are no interactions/contraindications and it works - seems like an answer. Ask a pharmacist..."

Patrick Winter 01-30-2016 04:56 PM

So, you're saying just for sleep though right? This stuff makes ya pretty drowsy, they say you shouldn't be driving or operating heavy machinery on it.

Is it a case of just zombifying you like a gabapentin or neurontin or does it actually alleviate pain?

mrsD 01-30-2016 05:03 PM

Chlorpheniramine is chemically related to Unisom and Benadryl.
Its old trade name was ChlorTrimeton.

For many years it was RX like Benadryl was but is now OTC.

It is one of the first gen antihistamines, and therefore sedating.
People with dry mouth/eyes already would find it difficult to tolerate I would think. Men with prostate issues, also are warned not to use it. It has some anticholinergic properties therefore.
There was just recently in the media, a study warning adults to not use it long term as anticholinergic drugs have been linked to developing Alzheimer's. The jury is still out on that 100% but it is something to think about.

The long acting form, OTC was called Teldrin. That form is no longer available in the US.

MAT52 01-30-2016 05:26 PM

Quote:

Originally Posted by mrsD (Post 1196434)
Chlorpheniramine is chemically related to Unisom and Benadryl.
Its old trade name was ChlorTrimeton.

For many years it was RX like Benadryl was but is now OTC.

It is one of the first gen antihistamines, and therefore sedating.
People with dry mouth/eyes already would find it difficult to tolerate I would think. Men with prostate issues, also are warned not to use it. It has some anticholinergic properties therefore.
There was just recently in the media, a study warning adults to not use it long term as anticholinergic drugs have been linked to developing Alzheimer's. The jury is still out on that 100% but it is something to think about.

The long acting form, OTC was called Teldrin. That form is no longer available in the US.

Yes I was aware of the possible link with Alzheimers and this concerns me of course. But I think there are also risks from the insomnia that comes with pain.

I also feel there are so many environmental factors that put us at risk of Altheimers, cancer etc - particularly in the States where food additives are far less closely regulated. The problems the human race is causing to the natural world - the consequences of fracking on the bee population which will impact on the survival of the human race for example. I don't think one antihistamine a night can be nearly as harmful as these things surely? But I'm mindful of what you say MrsD - every medicine has a downside and it is important to take it with our eyes wide open. Which is why I asked here.

I recall one very forthright doctor telling me many years ago that Piriton was a "dirty drug" because of its sedative properties. But compared to Zopiclone, Methotrexate, Imuran, Tricyclic antidepressants, anti convulsants or steroids, all of which I've tried, well it seems relatively clean and innocuous? Mat

Ps I have very dry eyes but they haven't become any worse since taking this.

MAT52 01-30-2016 05:32 PM

Quote:

Originally Posted by Patrick Winter (Post 1196430)
So, you're saying just for sleep though right? This stuff makes ya pretty drowsy, they say you shouldn't be driving or operating heavy machinery on it.

Is it a case of just zombifying you like a gabapentin or neurontin or does it actually alleviate pain?

No I don't think so - I'm thinking it's helping a lot with the burning pain in my hands and wrists and feet and knees at night too. But sleeping is pretty important of course! And I'm asking if it's okay here rather than recommending it as such.

mrsD 01-30-2016 05:59 PM

It is possible that the side effects which you find helpful will fade with time. There is always a honeymoon period with drugs.
As you body gets used to it, you might find a different response.

MAT52 01-30-2016 06:09 PM

Quote:

Originally Posted by mrsD (Post 1196447)
It is possible that the side effects which you find helpful will fade with time. There is always a honeymoon period with drugs.
As you body gets used to it, you might find a different response.

I'm sure you are right MrsD - it wasn't anything I was expecting to benefit from and, as Amitriptiline did after a few years, it will probably wear off. But interesting that an antihistamine can help me at all with nerve pain - wondering whether there's an allergic component to my SFN perhaps?

en bloc 01-30-2016 07:06 PM

My only concern with this is the anticholinergic properties with this drugs. You believe you are sero-negative Sjogren's and this is contraindicated for anyone with Sjogren's. This will compound the damage on any/all moisture producing glands...from salivary glands, eyes, joints, etc, etc.

I'm not sure why it's working for you, but my first thought would be the help with better sleep. Your body functions so much better as a whole with more fulfilling sleep. It would be interesting to know if the antihistamine properties have some sort of connection to nerve function. It's worth some Googling time to research.

How long have you been taking it, and how soon after did you notice the improvement?

Patrick Winter 01-30-2016 07:50 PM

When I have tried the anti-histamine treatment after seeing it was helpful for some in clinical trials years ago (most notably dextromethorphan), I found almost no relief from it. Aside from that I could not find a version that wasn't compounded with either sugar, artificial color or dyes. All of those things actually increase my SFN (burning) almost instantly.

DavidHC 01-30-2016 08:11 PM

I thought I'd post this thread (in the resources section): http://neurotalk.psychcentral.com/thread161714.html

And this study: http://www.ncbi.nlm.nih.gov/pubmed/23494529

I've been looking into histamine issues myself, and have spoken with my GP about it. I get hives regularly, as well as itches that leave red marks on the skin upon scratching (can't recall the medical term for it at the moment). Clearly I now have a histamine problem along with whatever illness has given me SFN, whereas I didn't before. Histamine levels are high and I'm allergic to all sorts of things now. Clearly a GI and full body problem. When this happens my symptoms increase too.

My doctor recommended an anti-histamine, it was benedryl or reactine, can't recall now, throughout the day, but I'm inclined to first try diamine oxydase, and see if it's due to GI/ingested histamine first. Of course, I think my overall histamine levels are high, though I can't be sure. Regardless, histamine is implicated in whatever is going on with my body.

en bloc 01-30-2016 09:20 PM

David,

The immune system is directly tied to our allergies. So, if you have an autoimmune based neuropathy, your immune system as a whole is affected...including your allergic responses. Therefore I'm not surprised to hear your account of hives and dermographism (which is histamine based).

I have experienced some very weird allergies over the 19 years of this mess. Before this all began I only had one allergy to sulfa antibiotics. After everything went crazy, I now have drug reactions to EVERY antibiotic in every drug class. I get fluid filled blisters on every mucus membrane. Of course, they believe it is directly related to my Sjogren's (due to the connection of mucus membranes), but don't know the underlining reason for it. I also have difficulties with other medications and allergies, as well as tested both positive AND negative for the same allergens at different time. Serious, one time I will test positive, then next I will test negative. This is ALL autoimmune related and how it affects your allergens.

I do take Benadryl right before my IVIG (which is standard protocol as a pre-med), but I also take Zyrtec for 2 days before IVIG and two-three days after. I really think it makes a difference in my responses to the IVIG and lessens the side-effects. However, I don't see any difference in my neuropathy.

This is all very interesting. It would be great if Mat52 or you can get relief from something as simple as an antihistamine.

MAT52 01-31-2016 12:20 AM

Quote:

Originally Posted by en bloc (Post 1196454)
My only concern with this is the anticholinergic properties with this drugs. You believe you are sero-negative Sjogren's and this is contraindicated for anyone with Sjogren's. This will compound the damage on any/all moisture producing glands...from salivary glands, eyes, joints, etc, etc.

I'm not sure why it's working for you, but my first thought would be the help with better sleep. Your body functions so much better as a whole with more fulfilling sleep. It would be interesting to know if the antihistamine properties have some sort of connection to nerve function. It's worth some Googling time to research.

How long have you been taking it, and how soon after did you notice the improvement?

Perhaps it's just that taking it some nights for a few months now has coincided with less pain? This is what I'm not sure of to be honest. The SFN is less burning but I'm equally tingly (pins and needles) and increasingly numb in my feet and face. And it has helped me sleep a bit better but then I have stages of improved sleep. I don't like taking any surplus meds so I'm only taking it every other night just now. I'm newly on a calcium channel blocker, Amlodopine, alongside an ARB, Losartan, to try and get my blood pressure down so I did check with the pharmacist that this was okay and she frowned a bit but said they weren't contraindicated with antihistamines. I think I'll stop because the eye dryness is bad these days and I don't want to make it worse.

I'm fairly convinced I have seronegative Sjogrens to thank for all these problems but the oral surgeon didn't suggest doing a lip biopsy the other day and Sjogrens wasn't mentioned. He felt that I have some type of autoimmune neuropathy going on. It just seems that Sjogrens makes the most sense given I have this non erosive RA and Hashimoto's already. I don't think Sjogrens is as acknowledged in Scotland as it is elsewhere in the world and even if a lip biopsy gave a positive result I don't think they would give me anything more now to treat it.

But I didn't know that antihistamines would actually make it worse. Maybe this is why I have my present problems to begin with because I took it regularly for decades for my severe eczema and allergies? Thank you for giving me more food for thought! Mat

Neuroproblem 01-31-2016 12:43 AM

Quote:

Originally Posted by MAT52 (Post 1196405)
I happened upon a great discovery for myself. I started taking these antihistamines in an effort to find something that would improve my sleep - other than highly addictive sleeping pills or the antidepressant and anticonvulsant families. I had severe tolerance issues with three of these and not prepared to risk any more

I often used to take antihistamines regularly for severe eczema and allergies and had some left over unopened from a 2014 prescription. So I thought it worth a try at least as no contraindications with my BP meds - not strong drugs and I've tolerated them before.

Wonder of wonders it seems to help a lot with my neuro and vestibular symptoms! It may just be because of the sedative component of course but even when I wake in the early hours I don't have the burning in my hands half as badly. I just wonder if anyone else knows about this? Hoping it might help others perhaps. Here is what a friend from a lupus forum found out for me.

"Apparently
"Limited clinical evidence shows that [chlorphenamine] is comparable to several antidepressant medications in its ability to inhibit the reuptake of serotonin and also norepinephrine (noradrenaline)."

and

"There are several different classes of medications commonly used to treat neuropathic pain. These include antidepressants, anticonvulsants, opioids, and topical treatments. Tricyclic antidepressants (TCAs) consistently are recommended as first tier drugs across all guidelines ... TCAs consistently were selected as first-tier choices based on their efficacy and other factors such as cost and availability. Their mechanism of action is inhibition of serotonin and norepinephrine reuptake."

Which looks like the link to me.

If there are no interactions/contraindications and it works - seems like an answer. Ask a pharmacist..."

i take another 1st generation antihistimine, mainly Diphenhydramine(generic), and it does help with contact dermatitis, i had been suffering all last semester. its better than ceterizine(1 day effect, but lately it has been causing alot of itching), fexofenadine(allegra) limited effect on my nasal allergies, lotaradine, for some reason i cant tolerate it. it seems indirectly it also cancels out my nasal allergies for a few hours though. it seems you have some valid argument, it seems it can act what you claim, but this should not be used regularly, what ive found out when taking diphenhydramine(similar) for a few weeks, the levels build up in your system, and the side effects will increase. i only use once a day.
are you still suffering from allergies? i am also thinking about buying chlorperamine, otc, for my allergies. how often are using it?
It also said halogenated antihistimines have higher potency as well. allergies is dependant on what type of reaction, histamine, or t-cell related which eczema, psoriasis, and dermatitis is with, which is why anti-histamines have limited effect on it sometimes.

MAT52 01-31-2016 01:28 AM

Quote:

Originally Posted by Neuroproblem (Post 1196521)
i take another 1st generation antihistimine, mainly Diphenhydramine(generic), and it does help with contact dermatitis, i had been suffering all last semester. its better than ceterizine(1 day effect, but lately it has been causing alot of itching), fexofenadine(allegra) limited effect on my nasal allergies, lotaradine, for some reason i cant tolerate it. it seems indirectly it also cancels out my nasal allergies for a few hours though. it seems you have some valid argument, it seems it can act what you claim, but this should not be used regularly, what ive found out when taking diphenhydramine(similar) for a few weeks, the levels build up in your system, and the side effects will increase. i only use once a day.
are you still suffering from allergies? i am also thinking about buying chlorperamine, otc, for my allergies. how often are using it?
It also said halogenated antihistimines have higher potency as well. allergies is dependant on what type of reaction, histamine, or t-cell related which eczema, psoriasis, and dermatitis is with, which is why anti-histamines have limited effect on it sometimes.

Hi Neuroproblem. No I don't suffer from any allergies just now - unless, that is, the SFN could turn out to be an allergy in itself? No skin allergies presently although I have always had very fair, sensitive skin and I do have an itchy scalp and tiny red itchy spots which come and go on my face and neck. Sulfasalazine gave me anaphylaxis with the most awful rash five years ago, Hydroxichloraquine too with hives and angioderma - although less dramatic. I had total alopecia twice as a child and once post gestationally. I also had a few years of severe rhinitis and severe eczema plagued me all my life right up until my menopause started - then it disappeared overnight. A few years later my RA started along with the beginning of the SFN.

I only take the Chlorphenamine 4mg once at night every other night. Mat

stillHoping 01-31-2016 02:34 AM

Quote:

Originally Posted by MAT52 (Post 1196532)
Hi Neuroproblem. No I don't suffer from any allergies just now - unless, that is, the SFN could turn out to be an allergy in itself? No skin allergies presently although I have always had very fair, sensitive skin and I do have an itchy scalp and tiny red itchy spots which come and go on my face and neck. Sulfasalazine gave me anaphylaxis with the most awful rash five years ago, Hydroxichloraquine too with hives and angioderma - although less dramatic. I had total alopecia twice as a child and once post gestationally. I also had a few years of severe rhinitis and severe eczema plagued me all my life right up until my menopause started - then it disappeared overnight. A few years later my RA started along with the beginning of the SFN.

I only take the Chlorphenamine 4mg once at night every other night. Mat

Hi Mat,maybe you can try an antihistamin that is less sedative, such as fexofenadine, just to find out wheter it is the sleep or the allergy that affects your SFN symptoms.

mrsD 01-31-2016 10:00 AM

David, you might look into HAE... this has an effect of raising bradykinin (a relative of histamine).

I have this and it was only recently discovered. Lisinopril was the culprit that triggered a massive crisis/attack, so I know about this more now. Bradykinin causes the dermographia you describe and GI symptoms. However, bradykinin does not respond to antihistamines.

More here:
https://www.nlm.nih.gov/medlineplus/...cle/001456.htm

https://en.wikipedia.org/wiki/Hereditary_angioedema

I had an echocardiogram last year, that included an injection into my hand of a visualizing agent. My left hand swelled up for over 2 months from that. It looked like the photo on the Wiki, but slightly less.

http://www.haea.org/patients/what-is-hae/

There is an acquired form, that shows up in people using ACE inhibitors for blood pressure.

And I have read that eggs and fresh fruit can be triggers for the GI form.

mrsD 01-31-2016 10:03 AM

Quote:

Originally Posted by MAT52 (Post 1196519)
Perhaps it's just that taking it some nights for a few months now has coincided with less pain? This is what I'm not sure of to be honest. The SFN is less burning but I'm equally tingly (pins and needles) and increasingly numb in my feet and face. And it has helped me sleep a bit better but then I have stages of improved sleep. I don't like taking any surplus meds so I'm only taking it every other night just now. I'm newly on a calcium channel blocker, Amlodopine, alongside an ARB, Losartan, to try and get my blood pressure down so I did check with the pharmacist that this was okay and she frowned a bit but said they weren't contraindicated with antihistamines. I think I'll stop because the eye dryness is bad these days and I don't want to make it worse.

I'm fairly convinced I have seronegative Sjogrens to thank for all these problems but the oral surgeon didn't suggest doing a lip biopsy the other day and Sjogrens wasn't mentioned. He felt that I have some type of autoimmune neuropathy going on. It just seems that Sjogrens makes the most sense given I have this non erosive RA and Hashimoto's already. I don't think Sjogrens is as acknowledged in Scotland as it is elsewhere in the world and even if a lip biopsy gave a positive result I don't think they would give me anything more now to treat it.

But I didn't know that antihistamines would actually make it worse. Maybe this is why I have my present problems to begin with because I took it regularly for decades for my severe eczema and allergies? Thank you for giving me more food for thought! Mat

Only first generation antihistamines cause the dryness. You could try Claritin (although one listing did cite it as drying also), or Allegra. These are often used when anticholingeric responses are to be avoided. I thought I gave you a link listing antihistamines in the past? But maybe that was on another poster's thread.

DavidHC 01-31-2016 01:47 PM

Yes, of course, En Bloc, you're quite right, and that's why I haven't made much of it. Unlike conventional medicine, we know that the body is a whole and that immune issues will lead to all sorts of weird things. It's no coincidence that the dermographism all started together. The interesting thing is that before the intense onset of the SFN, I had this issue, but didn't make much of it. I used to drink lots of alcohol and that obviously doesn't help with the histamine. But I haven't touched a drop for many months. Anyway, another issue...

I'll tell you something funny: I have a friend with a dog (I had dogs growing up) and one time I went over and had allergies to the dog. It was uncanny. The next time I went over it was gone! How's that for weird? My allergy panel showed allergies to cats and dogs, and I was only ever allergic to cats. No allergic reactions to the dog now. The immune system is so complex and when there are immune issues, it can do all sorts of things, most of which we just don't quite understand.

I had my histamine down with diet for some time, but I've been taking a bit of a break from my diet (still no gluten, alcohol, dairy and a number of other things), partly for indulgence reasons but partly because I want to see where I'm at after months of being on a very restrictive diet. I'll be going back on the strict diet again tomorrow, and will see whether I can naturally get the histamine down. I'd try the enzymes before the pharmaceuticals. I would rather have the reactions I do than take antihistamines regularly. I just refuse to take any unless I really need them, and my pain is much better than it used to be. I might try it out of pure curiosity though: to see if my SFN is connected to histamine in terms of symptoms.

BTW they gave me a Benadryl IV along with steroids back when I had an allergic reaction to the MRI gadolinium. After that, for a whole day, I had numb arms, from the elbow to the hand, both arms. But the other issues, the swelling and insanely red eyes went away almost immediately. They had no idea I was allergic, and who knows if I 'really' am, or whether it's thanks to my new inflamed immune system.

I'll let you know if I do the experiment, and thanks. :)



Quote:

Originally Posted by en bloc (Post 1196490)
David,

The immune system is directly tied to our allergies. So, if you have an autoimmune based neuropathy, your immune system as a whole is affected...including your allergic responses. Therefore I'm not surprised to hear your account of hives and dermographism (which is histamine based).

I have experienced some very weird allergies over the 19 years of this mess. Before this all began I only had one allergy to sulfa antibiotics. After everything went crazy, I now have drug reactions to EVERY antibiotic in every drug class. I get fluid filled blisters on every mucus membrane. Of course, they believe it is directly related to my Sjogren's (due to the connection of mucus membranes), but don't know the underlining reason for it. I also have difficulties with other medications and allergies, as well as tested both positive AND negative for the same allergens at different time. Serious, one time I will test positive, then next I will test negative. This is ALL autoimmune related and how it affects your allergens.

I do take Benadryl right before my IVIG (which is standard protocol as a pre-med), but I also take Zyrtec for 2 days before IVIG and two-three days after. I really think it makes a difference in my responses to the IVIG and lessens the side-effects. However, I don't see any difference in my neuropathy.

This is all very interesting. It would be great if Mat52 or you can get relief from something as simple as an antihistamine.


DavidHC 01-31-2016 02:24 PM

Thanks, MrsD. I don't believe that's what I have, since I don't get any swelling. It also seems pretty damn rare and should be present elsewhere in my family, if I'm not mistaken. Sorry to hear you have it. Is it controlled easily, only reactive to things that you can avoid?

But perhaps I should look into bradykinin. It seems to cause issues that I don't have, whereas histamine fits in better. But I'm going to read up on it. Why do you think it might be an issue for me, and do you mean rather than then histamine? Of was it just a general statement that you thought might apply to me too? I can say I've had zero swelling or other such issues that signal bradykinin.


Quote:

Originally Posted by mrsD (Post 1196566)
David, you might look into HAE... this has an effect of raising bradykinin (a relative of histamine).

I have this and it was only recently discovered. Lisinopril was the culprit that triggered a massive crisis/attack, so I know about this more now. Bradykinin causes the dermographia you describe and GI symptoms. However, bradykinin does not respond to antihistamines.

More here:
https://www.nlm.nih.gov/medlineplus/...cle/001456.htm

https://en.wikipedia.org/wiki/Hereditary_angioedema

I had an echocardiogram last year, that included an injection into my hand of a visualizing agent. My left hand swelled up for over 2 months from that. It looked like the photo on the Wiki, but slightly less.

http://www.haea.org/patients/what-is-hae/

There is an acquired form, that shows up in people using ACE inhibitors for blood pressure.

And I have read that eggs and fresh fruit can be triggers for the GI form.


en bloc 01-31-2016 02:25 PM

I am not surprised at all about the dog experience. just what I was saying about being sensitive one time, then not the next. My testing was very clearly positive one time, then negative the next, then back to positive, etc.

I am more convinced than ever that your problems are autoimmune based.

DavidHC 01-31-2016 02:44 PM

Exactly. I offered it as a parallel to your story. En Bloc, there's little doubt in my mind. For a few months now my goal has been to treat the underlying cause of it. From the beginning I thought it was some infection, virus, what have you via the GI, given my GI issues and how they had gotten worse. I have serious dysbiosis from years of drinking and eating poorly, as well as from antiobiotics. It has gotten worse. I will treat my gut and see what happens. So far mu hunch has proven to be quite promising: by treating my gut via supplements, diet, and other relevant things, my symptoms have improved immensely. Moreover, there's a reason why taking vitamin D, the all important immune vitamin, has been so groundbreaking for me. It's amazing what it has done. So in short I completely agree with you. Now to see where this goes, whether I can achieve remission, or what have you. I hate to say it, but I find autoimmunity a fascinating issue, even though it's making me suffer on a personal level...



Quote:

Originally Posted by en bloc (Post 1196607)
I am not surprised at all about the dog experience. just what I was saying about being sensitive one time, then not the next. My testing was very clearly positive one time, then negative the next, then back to positive, etc.

I am more convinced than ever that your problems are autoimmune based.


DavidHC 01-31-2016 02:47 PM

En Bloc, how are you with vitamin D?

en bloc 01-31-2016 04:00 PM

I was just about to ask you the same...what your level is.

I have severe gastroparesis from autonomic dysfunction, so it makes for very difficult absorption of nutrients. Therefore, my Vitamin D has been low for quite some time, regardless of many attempts at supplementing with both D3 and Rx D2 (50,000 iu twice a week for 12 weeks). I have same issue with iron, but get that via IV every now & then to keep levels up. My vitamin D is being retested on Feb 17 and I will get results at f/u visit on Feb 25. My last test (4 months ago) it was still only 26 (again after 12 weeks of 50,000 weekly Rx D2)...and that was an slight improvement from the previous level of 22.

What is your level?

DavidHC 01-31-2016 04:39 PM

You know, I may have some gastroparesis, but I can't be sure. Regardless, I hope it doesn't come back or get worse, if I do have it. Has yours improved at all, or has it gotten worse? I'm sorry to hear you have such a severe case. Is that typical with Sjogren's, or can one never tell? How do you treat it?

Anyway, don't mind all the questions. I'm just curious and sad to hear that you have such problem. It sounds like a particularly difficult issue to deal with.

So, have you seen this thread that I started. It documents my struggle and all. I've had serious issue with D and finding one that can work. I will update it today, later on, but I'm doing better, though too soon to tell for sure. Here it is: http://neurotalk.psychcentral.com/thread229410.html. As you can see from the first post, I was in the low 20s, 23 I believe. I will get tested again very soon. How long have you known that you were deficient? Does it go back years? I found out quite early on, in November.

Do you know about the D3 creams? The wonderfully informed Mrs.D is the one who told me about them. I've been using one for 5 days now (this cheap one: http://www.amazon.com/gp/product/B00...=ATVPDKIKX0DER) and it bypasses by GI, so I don't have those issues now, and it's working. I can tell. Soon I'll know about serum levels. En Bloc, it has truly worked miracles for me. I hope you can try it and that it can help you. Pick a fatty part of your body and try a dab, then more, if you like. Dosage is obviously not as precise, but it doesn't matter and hasn't created problems for me.



Quote:

Originally Posted by en bloc (Post 1196625)
I was just about to ask you the same...what your level is.

I have severe gastroparesis from autonomic dysfunction, so it makes for very difficult absorption of nutrients. Therefore, my Vitamin D has been low for quite some time, regardless of many attempts at supplementing with both D3 and Rx D2 (50,000 iu twice a week for 12 weeks). I have same issue with iron, but get that via IV every now & then to keep levels up. My vitamin D is being retested on Feb 17 and I will get results at f/u visit on Feb 25. My last test (4 months ago) it was still only 26 (again after 12 weeks of 50,000 weekly Rx D2)...and that was an slight improvement from the previous level of 22.

What is your level?


en bloc 01-31-2016 08:42 PM

My gastroparesis waxes and wanes, just as most of the other autonomic dysfunctions. I have periods with good control and then periods of it being so bad that I end up with SIBO (small intestine bacterial overgrowth)...which if when absorption (and symptoms) are at their worst.

The only real effective treatment for me is Domperidone (not available in the US, but I get it from overseas) and lifestyle changes. These consist of eating small meals, nothing after 5 pm to avoid nighttime symptoms, walking after I eat, avoiding raw veggies, fruits and nuts...but steamed/cooked veggies are fine and fruit juices in moderation. When things are bad I grind up my food for easier digestion. If I get to the point of SIBO, then I have to take Rifaximin...an antibiotic just for GI bacteria infections. It is not absorbed into the blood stream so I don't have problems with allergic reactions like other antibiotics. It works well but my insurance doesn't cover it anymore so VERY expensive.

I have not tried Vit D cream, but may do so. I'd be interested in seeing whether your level actually increased from it. I have read many things about vitamin D, including what MrsD has said about differences between D2 & D3. I have tried both. My doctor says that although D3 will raise levels faster, it does not do so at the cellular level. Pharmacist says the same. I have the read articles MrsD has posted and they make sense also. It's hard for someone to make sense of this when there is conflicting reports. I will see what my levels come back after taking this latest round of D2 at my doctors begging (after me arguing with him about MrsD's reports on D3 being better). The proof is in the pudding, so they say. I had no improvement on D3 and will now see what happens on extensive D2. I have labs drawn on Feb 17th and results should be back the 25th. My doctor is fully aware of how important vitamin D is the overall picture with autoimmune disease, so I will do just about anything to get my level up. If my level hasn't come up with these labs, then I will certainly get the cream and try that. One thing at a time, so I know what is working and what isn't.

DavidHC 01-31-2016 10:09 PM

En Bloc, I'm sorry you have to deal with such things. Thank you for sharing with me. I appreciate that. You've been very helpful to be on this forum. It sounds like you know how to deal with it after so many years. I've met people who have had chronic conditions for many years and they still don't know what to do. And I do get the waxing and waning with autonomic dysfunctions, I definitely do. Mine all come and go as well.

SIBO is not easy to deal with. I think I'm dealing with it right now (I have good reasons), though I can't be sure (it could be Candida or just disbiosis). I wanted to bring this to your attention: http://www.ncbi.nlm.nih.gov/pmc/arti.../#!po=0.375940. I believe it's not the only study. I intend to use a series of herbal antibiotics starting in February and lasting a few months, not the ones in the study. I'll also use probiotics.

Well, let me know what happens with your D levels and your plans. It seems like you've had your issues too. I'm finding part of what you've written confusing: so are you (or your doctor and pharmacist) saying that even if serum levels go up (as per the 25-Hydroxy test), it doesn't guarantee that the cells have absorbed them, so increases at the cellular level? Are they claiming that one needs D2, if one is to increase D at the cellular level? Perhaps Mrs.D can speak about this too. Doesn't the test noted test at the cellular level? This could be an issue then.

I can say for myself I've not had D2 supplements, but have had D3, and that immediately upon taking even low doses, at 1000 IU, I feel improved mood, energy, less neuropathic pain in particular respects, and the like. It's immediate with me. I can say that getting more sun in the summer helped too, this in hindsight - I would just walk a lot and it was sunny, and I improved during this time. What I can't speak to yet is whether my serum levels are up. I have the test written for me, but will hold off for a month, maybe later February, since I've been on and off and finally seem to have something working for me, which I should at least take for a month before testing. But in terms of how I feel after taking the supplement, well it's glaringly obvious that it has a huge impact on me in all sorts of ways. At night, for example, I used to just lose all energy, couldn't stand on my legs, which were wobbly, had immense bone and muscle pain, and need to fall on my mattress; this is all gone now, completely, and it happened immediately upon taking the D3, the first day I did. I'm not sure what to make of all this.


Quote:

Originally Posted by en bloc (Post 1196667)
My gastroparesis waxes and wanes, just as most of the other autonomic dysfunctions. I have periods with good control and then periods of it being so bad that I end up with SIBO (small intestine bacterial overgrowth)...which if when absorption (and symptoms) are at their worst.

The only real effective treatment for me is Domperidone (not available in the US, but I get it from overseas) and lifestyle changes. These consist of eating small meals, nothing after 5 pm to avoid nighttime symptoms, walking after I eat, avoiding raw veggies, fruits and nuts...but steamed/cooked veggies are fine and fruit juices in moderation. When things are bad I grind up my food for easier digestion. If I get to the point of SIBO, then I have to take Rifaximin...an antibiotic just for GI bacteria infections. It is not absorbed into the blood stream so I don't have problems with allergic reactions like other antibiotics. It works well but my insurance doesn't cover it anymore so VERY expensive.

I have not tried Vit D cream, but may do so. I'd be interested in seeing whether your level actually increased from it. I have read many things about vitamin D, including what MrsD has said about differences between D2 & D3. I have tried both. My doctor says that although D3 will raise levels faster, it does not do so at the cellular level. Pharmacist says the same. I have the read articles MrsD has posted and they make sense also. It's hard for someone to make sense of this when there is conflicting reports. I will see what my levels come back after taking this latest round of D2 at my doctors begging (after me arguing with him about MrsD's reports on D3 being better). The proof is in the pudding, so they say. I had no improvement on D3 and will now see what happens on extensive D2. I have labs drawn on Feb 17th and results should be back the 25th. My doctor is fully aware of how important vitamin D is the overall picture with autoimmune disease, so I will do just about anything to get my level up. If my level hasn't come up with these labs, then I will certainly get the cream and try that. One thing at a time, so I know what is working and what isn't.


Neuroproblem 02-01-2016 04:59 AM

Quote:

Originally Posted by MAT52 (Post 1196532)
Hi Neuroproblem. No I don't suffer from any allergies just now - unless, that is, the SFN could turn out to be an allergy in itself? No skin allergies presently although I have always had very fair, sensitive skin and I do have an itchy scalp and tiny red itchy spots which come and go on my face and neck. Sulfasalazine gave me anaphylaxis with the most awful rash five years ago, Hydroxichloraquine too with hives and angioderma - although less dramatic. I had total alopecia twice as a child and once post gestationally. I also had a few years of severe rhinitis and severe eczema plagued me all my life right up until my menopause started - then it disappeared overnight. A few years later my RA started along with the beginning of the SFN.

I only take the Chlorphenamine 4mg once at night every other night. Mat

looks like your dermatitis,eczema couldve been hormone related. ive been plagued with rhinitis, and many years ago, it caused frequent nosebleeds due to allergies(which i discovered) after i had a blood vessel cauterized. All my nasal allergies stopped or died down a bit when i started antihistamines, it seems ceterizine and diphenhydramine worked the best. currently my contact dermatitis which has been around for 1.5 years now, has been plaguing me starting from summer to next spring. Last year my dermatitis mysteriously died down to the point where i stopped using antihistimine and topical triamcinilone ointment use. then it started ravaging my skin near the end of july(hot weather). dermatitis). im suprised you found such relief in such an unusual drug,which is meant for allergies.

SylvieM 02-01-2016 07:43 AM

Dear David (and others),

I don't know much about this, but some people *administrative edit* also have Mast Cell Activation Syndrome. Your new allergies and SFN may be both traced to this.

I should look into it as well, for my dysautonomia began with a host of neurological symptom s and anaphylaxis....I never put it together!

Antihistamines help this......

I hope this a more optimistic research path to follow than amyloidosis!

Sylvie

DavidHC 02-01-2016 06:49 PM

Thanks, Sylvie. I'll look into it, though an initial read seemed to indicate that it's not easily diagnosed and there are not even WHO guidelines for diagnosis. I don't have a number of the issues/symptoms listed, but that doesn't mean much, I know. Anyway, thanks again, I'll look into. If anyone knows more, please do share.


Quote:

Originally Posted by SylvieM (Post 1196720)
Dear David (and others),

I don't know much about this, but some people *administrative edit* also have Mast Cell Activation Syndrome. Your new allergies and SFN may be both traced to this.

I should look into it as well, for my dysautonomia began with a host of neurological symptom s and anaphylaxis....I never put it together!

Antihistamines help this......

I hope this a more optimistic research path to follow than amyloidosis!

Sylvie


SylvieM 02-01-2016 07:36 PM

Hey David,
*administrative adit* if you Google "Mast Cell Acitivation Syndome" and "dysautonomia," lots of good sources pop up. The diagnostic is an endoscopy and biopsy...which I recently had for GERD. Lots of gut issues with this syndrome as well. Wiki is also a good starting point for sources.

It seems a lot of what you have been writing about yourself might be explained by this...hives, neuropathy, digestive issues....

S

DavidHC 02-01-2016 08:11 PM

Thanks. I found this helpful site: http://www.thepatientceliac.com/2014...drome-madness/

I've read her blog before, very good.


Quote:

Originally Posted by SylvieM (Post 1196840)
Hey David,
*administrative adit* if you Google "Mast Cell Acitivation Syndome" and "dysautonomia," lots of good sources pop up. The diagnostic is an endoscopy and biopsy...which I recently had for GERD. Lots of gut issues with this syndrome as well. Wiki is also a good starting point for sources.

It seems a lot of what you have been writing about yourself might be explained by this...hives, neuropathy, digestive issues....

S


DavidHC 02-01-2016 08:47 PM

Just finished reading this most thorough of articles on the subject: https://www.novapublishers.com/catal...ducts_id=42603. Very fascinating. Diagnostic criteria are not ideal at the moment and entirely agreed upon. The ones he recommends might be possible where I am, but we'll have to see. I'll bring it up with my physician. Another possibility is to use the anti-histamines and/or go on a low histamine diet to see if there is improvement. Mat, this might be something to look into. I'd consider contacting the author of the article, who is in MN. So much to consider!




Quote:

Originally Posted by DavidHC (Post 1196849)
Thanks. I found this helpful site: http://www.thepatientceliac.com/2014...drome-madness/

I've read her blog before, very good.


en bloc 02-01-2016 10:22 PM

Quote:

Originally Posted by DavidHC (Post 1196680)
En Bloc, I'm sorry you have to deal with such things. Thank you for sharing with me. I appreciate that. You've been very helpful to be on this forum. It sounds like you know how to deal with it after so many years. I've met people who have had chronic conditions for many years and they still don't know what to do. And I do get the waxing and waning with autonomic dysfunctions, I definitely do. Mine all come and go as well.

SIBO is not easy to deal with. I think I'm dealing with it right now (I have good reasons), though I can't be sure (it could be Candida or just disbiosis). I wanted to bring this to your attention: http://www.ncbi.nlm.nih.gov/pmc/arti.../#!po=0.375940. I believe it's not the only study. I intend to use a series of herbal antibiotics starting in February and lasting a few months, not the ones in the study. I'll also use probiotics.

Well, let me know what happens with your D levels and your plans. It seems like you've had your issues too. I'm finding part of what you've written confusing: so are you (or your doctor and pharmacist) saying that even if serum levels go up (as per the 25-Hydroxy test), it doesn't guarantee that the cells have absorbed them, so increases at the cellular level? Are they claiming that one needs D2, if one is to increase D at the cellular level? Perhaps Mrs.D can speak about this too. Doesn't the test noted test at the cellular level? This could be an issue then.

I can say for myself I've not had D2 supplements, but have had D3, and that immediately upon taking even low doses, at 1000 IU, I feel improved mood, energy, less neuropathic pain in particular respects, and the like. It's immediate with me. I can say that getting more sun in the summer helped too, this in hindsight - I would just walk a lot and it was sunny, and I improved during this time. What I can't speak to yet is whether my serum levels are up. I have the test written for me, but will hold off for a month, maybe later February, since I've been on and off and finally seem to have something working for me, which I should at least take for a month before testing. But in terms of how I feel after taking the supplement, well it's glaringly obvious that it has a huge impact on me in all sorts of ways. At night, for example, I used to just lose all energy, couldn't stand on my legs, which were wobbly, had immense bone and muscle pain, and need to fall on my mattress; this is all gone now, completely, and it happened immediately upon taking the D3, the first day I did. I'm not sure what to make of all this.


Thanks for the article on SIBO. I noticed that several of the contributors to the article are GI's from Hopkins (which is where my GI is located). I plan to contact him and ask whether he knows of this study or the other physicians that contributed. There is a contraindication with the ingredients of the herbal supplement that may not allow me to use it (cannot be taken if on blood thinners or using reflux meds), but again, I will ask about this before dismissing the possibility. It appears it has about the same effectiveness as the Rifaximin and I've never had any problems taking the Rifaximin (other than the cost---but I can get overseas for less).

I'll post my Vitamin D levels when I get them. I hope I have some improvement.

Thanks again!

DavidHC 02-01-2016 10:49 PM

Interesting. Do let me know what they say. There are other studies, at least one more, showing the same thing, I believe. Also, check this out: http://www.siboinfo.com/herbal-antibiotics.html. You needn't use those formulations. I am not. I will use various herbs in single supplement form, so I can know which are working and which are not: garlic, neem, cinnamon, goldenseal, oregano and various others.

I hope you do too. I'll do the same with mine. I could do it now, but I don't think they're up yet, too soon. I wish both of us good luck. :)


Quote:

Originally Posted by en bloc (Post 1196869)
Thanks for the article on SIBO. I noticed that several of the contributors to the article are GI's from Hopkins (which is where my GI is located). I plan to contact him and ask whether he knows of this study or the other physicians that contributed. There is a contraindication with the ingredients of the herbal supplement that may not allow me to use it (cannot be taken if on blood thinners or using reflux meds), but again, I will ask about this before dismissing the possibility. It appears it has about the same effectiveness as the Rifaximin and I've never had any problems taking the Rifaximin (other than the cost---but I can get overseas for less).

I'll post my Vitamin D levels when I get them. I hope I have some improvement.

Thanks again!


MAT52 02-02-2016 12:55 PM

Quote:

Originally Posted by DavidHC (Post 1196874)
Interesting. Do let me know what they say. There are other studies, at least one more, showing the same thing, I believe. Also, check this out: http://www.siboinfo.com/herbal-antibiotics.html. You needn't use those formulations. I am not. I will use various herbs in single supplement form, so I can know which are working and which are not: garlic, neem, cinnamon, goldenseal, oregano and various others.

I hope you do too. I'll do the same with mine. I could do it now, but I don't think they're up yet, too soon. I wish both of us good luck. :)

Hi - I can't really comment on a lot of the conversation and research on this thread because it's become very US specific or else too scientific for me i.e beyond my ken as we'd say here in Scotland:winky:

However I did want to say that I've been taking AdCal D3 for about two years now. I can't say 100% that this is more than coincidence - although my instincts say that it is. But when I started being prescribed this I had already learned for myself that I was D deficient by getting myself privately tested because my NHS GP refused to run this test - saying that everyone on this group of islands in the north east of Scotland would be low for vitamin D. The fact that it also has the highest incidence of MS per head of population in the world didn't seem to concern him in relation to my symptoms and history of autoimmunity. Also I'd been taking Methotrexate by injection for 2 years and all the warnings were to avoid direct sunlight if taking this medication.

So at the end of a long, hot summer - with plenty of time outside not wearing sun hats or keeping too well covered I got myself privately tested and my level was 28 - the very bottom of insufficient. I went to my GP and showed him this result and he agreed that it was a bit low, as were my calcium levels. By this time I was taking Prednisolone for an RA flare up so calcium was extra important.

Within two or three weeks of taking a chewable tablet everyday I found that the severe depression I was suffering from had lifted and has never returned despite some serious provocation! Also I have never suffered from RA synovial joint pain or swelling since taking this supplement. I've had my D levels and calcium levels checked and all are now within normal range.

Today I had my B12, Ferritin and Folate levels checked at my request. The GP said that if I've had B12 checked before and it has been fine it's unlikely to have changed. I think this is incorrect actually because I have friends who have Pernicious Anaemia who's serum B12 markers have radically changed prior to having injections. But if the lab refuse to run the test then I'll have to go private again. I'm determined to get to the root of my small fibre neuropathy. I did take sublingual methyl B12 Lozenges for six months but it made no difference at all to my SFN symptoms so I stopped. I also had myself privately tested for Coeliacs antibodies and found that I was only mildly wheat intolerant. I have been avoiding wheat and gluten for five years now but when I deviate occasionally it makes no difference to how well or ill I feel.

Hope this might be useful.

en bloc 02-02-2016 02:51 PM

Very helpful.

It will be quite interesting to see what your B12, Ferritin and Folate levels reveal.

Obviously, your Vit D responded well to your supplementing. I'm hoping mine will do the same.

DavidHC 02-02-2016 06:34 PM

Mat, fair enough. :) But I will say that I'm finding this whole issue of mast cells and Mast Cell Activation Syndrome very fascinating pertinent. I've read everything I can find since last night, a few hundred pages, and there have been cases with patients who have neuropathy arising from MCAS. Given how many of my symptoms, including my histamine issues, fall under this systematic or multi-tissue systemic disorder, I will look into this likely through a hematologist.

On another note, it's great that vitamin D has been so helpful to you. Just great! I'm not surprised though, since, among other things, my mood has dramatically improved. I am suffering from a bit of insomnia still, but I'm not yet sure it's the D. B12 has also been immensely helpful to me, as has my B complex, so perhaps they will help you also. These are such essential vitamins, all of them. And D is just something else and so central to so many functions, especially those that concern the immune system. I had normal B12, though on the lower end, but am still taking 1500 mcg each morning, and it has helped with energy and likely other things.



Quote:

Originally Posted by MAT52 (Post 1196966)
Hi - I can't really comment on a lot of the conversation and research on this thread because it's become very US specific or else too scientific for me i.e beyond my ken as we'd say here in Scotland:winky:

However I did want to say that I've been taking AdCal D3 for about two years now. I can't say 100% that this is more than coincidence - although my instincts say that it is. But when I started being prescribed this I had already learned for myself that I was D deficient by getting myself privately tested because my NHS GP refused to run this test - saying that everyone on this group of islands in the north east of Scotland would be low for vitamin D. The fact that it also has the highest incidence of MS per head of population in the world didn't seem to concern him in relation to my symptoms and history of autoimmunity. Also I'd been taking Methotrexate by injection for 2 years and all the warnings were to avoid direct sunlight if taking this medication.

So at the end of a long, hot summer - with plenty of time outside not wearing sun hats or keeping too well covered I got myself privately tested and my level was 28 - the very bottom of insufficient. I went to my GP and showed him this result and he agreed that it was a bit low, as were my calcium levels. By this time I was taking Prednisolone for an RA flare up so calcium was extra important.

Within two or three weeks of taking a chewable tablet everyday I found that the severe depression I was suffering from had lifted and has never returned despite some serious provocation! Also I have never suffered from RA synovial joint pain or swelling since taking this supplement. I've had my D levels and calcium levels checked and all are now within normal range.

Today I had my B12, Ferritin and Folate levels checked at my request. The GP said that if I've had B12 checked before and it has been fine it's unlikely to have changed. I think this is incorrect actually because I have friends who have Pernicious Anaemia who's serum B12 markers have radically changed prior to having injections. But if the lab refuse to run the test then I'll have to go private again. I'm determined to get to the root of my small fibre neuropathy. I did take sublingual methyl B12 Lozenges for six months but it made no difference at all to my SFN symptoms so I stopped. I also had myself privately tested for Coeliacs antibodies and found that I was only mildly wheat intolerant. I have been avoiding wheat and gluten for five years now but when I deviate occasionally it makes no difference to how well or ill I feel.

Hope this might be useful.



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