PBC and neuropathy

[Skypony]

Hi all

6 months ago I began quite suddenly to have painful pins and needles in my hands and feet, along with some 'mistaken' nerve signals like there was something underneath my foot when there wasn't.

Following thorough nerve conduction studies and examination by a neurologist, this was diagnosed as small fibre neuropathy.

I was told that this most commonly occurs in people with diabetes, or who have a problem with B vitamins, or several other common connections, none relevant for me. I was asked if I'd recently had an illness, especially a virus? Yes, I'd had a very severe laryngitis that lasted 4 wks just before onset of symptoms, and I was told that my neuropathy therefore was caused by an autoimmune attack. I was prescribed amitriptyline to help mask the symptoms and allow me to sleep better.

I assume that those of us with autoimmune disease (though I don't know if there's a connection to PBC) may be more prone to have our immune systems stoked up by a viral illness and then suffer a new misdirected autoimmune attack.

I wanted to wait before reporting back because I was told my symptoms were likely to settle within a few months, and to some extent they have, but I still feel mild tingling and have been told that this is likely to continue. I was told to stay well hydrated and well rested, and that was all I could do to help myself.

Hope this is of use to someone else.

Best wishes, Skypony

[butterflyEi]

Hi Skypony

I have been diagnosed with peripheral neuropathy by my GP not a specialist and have been prescribed gabapentine however I recently watched an Ask the Experts PBC Round Table which can be found on YouTube presented by PBCers in the USA. I was particularly interested in Saumya Jayakumar MD comments on the fat soluable vitamins of A D E & K. Listening to this You Tube clip (around about 37 minutes into talk) it appears that a lack of vitamin E may have an impact on nerve health. One to ask the doctor. In the meantime I intend to try to find out more information about these vitamins however I do take a vitamin D+K spray and a multi vitamin tablet without iron.

I have not been given advice to rest and stay well hydrated but that is something I do during the day.

I think I may ask the question on here to see who takes vitamins

Thank you for sharing this Skypony all information is knowledge and helpful.

best wishes

[gwillistexas in reply to butterflyEi]

I take E, D3, fish oil. I asked about K but dr said if I eat enough greens, shouldn’t need to supplement.

[Skypony in reply to gwillistexas]

Hi gwillistexas

Thank you, do you have neuropathy, or the vitamins are to support you in general with PBC?

Best wishes

[gwillistexas in reply to Skypony]

Skyping...no neuropathy. I’ve taken those for several years & d3 I’ve taken since 2010.

[gwillistexas in reply to Skypony]

Lol!!! I typed Skypony but autocorrect thought it was smarter...sorry

[Skypony in reply to butterflyEi]

Hi butterfly

Thank you for responding and for the very interesting information about the possible role of fat-soluble vitamins, which I didn't know about. I'll definitely listen to that YouTube clip.

How is your neuropathy, has the intensity of it lessened and does the gabapentin help you?

Best wishes

[butterflyEi in reply to Skypony]

Hi Skypony

Yes the gabapentin helps at the dose I take. The doctor said I could take more but I was bruising overly easily on a higher dose so reduced to 3 tablets a day. It keeps the sensation just in the feet and stops it crawling up the legs.

Waiting to see how these vitamins help if at all.

best wishes

[BethRL in reply to butterflyEi]

Hi. I too have tingling and some throbbing. Take B12 per a physician assistant.

I myself started taking E. For circulation from reading into vitamins further.

Not much improvement.

Will be going to a neurologist.

Never had this and it coincided with starting URso.

I am physically fit. Watch food intake. I had a physical and was diagnosed w PBC mild stage 1 via blood and then biopsy. Fibroscan shows no fibrosis.

I am contemplating to reduce URso. I might even stop for two wks to see if all stops.

I will start taking a complex B instead of only B12. My #s we’re not that low on B Excess will go out of system via urine.

ADEK are fat soluble. I am considering to take a multi for PBC can effect these.

Dr Weil a well known homeopathic Dr. Suggests Complex B and alpha lipoic acid.

Not pleased w this neuropathy that I am diagnosing. Drs want to prescribe meds for everything. Not a big advocate.

By the way, I’ll be 60. Never took in my life anything more than a antibiotic.

I’ll keep you posted. All the best.

[Skypony in reply to BethRL]

Hi BethRL

Sorry about your neuropathy. A blood test can show if you have a B vitamin problem. My neuropathy is definitely not connected to Urso, could yours be coincidental? Please think carefully before coming off Urso altogether, maybe try stopping for couple weeks to see? Yes, please do let us know how you get on.

Best wishes

[BethRL in reply to Skypony]

Hi.

So I made an appt for Neurologist. In the interim read from Dr Weil to take complex B and alpha liporic acid for circulation., tingling etc

I started two days ago alpha. I also decided on a good multi vitamin w complex B.

PBC suppose affect A D E K. So a multi I think can’t hurt.

I was reading ALA is good for neuropathy.

I will not take more meds. I will try natural methods. Time will tell.

All the best.

[GhostHunter]

Hi Skypony... just a word of caution as your body may respond differently than mine... but I too have pain in my nerve endings which they diagnosed a fibromyalgia, and I was on Amytriptiline and gabapentin and my liver enzymes started going up and they had to double the amount of Urso I was taking to offset it. Then I researched and the Amytriptiline was one of the worst drugs to take with liver disease according to my research... so I stopped taking both immediately and I am learning to deal with the pain now. Just watch your numbers on these drugs.

[Skypony in reply to GhostHunter]

Hi GhostHunter, thanks very much for this.

I too thought that about Amitriptyline and so I've tried to used it sparingly and hardly take it now. I wish you all the best for managing the pain - well done!

[Shulsey]

This sounds all too familiar. I've seen a neurologist also, plus two different rheumatologist. I take 100mg Amitriptylin at night, which is used for treatment of fibromyalgia. Now a low dose of prednisone has been added due to lupus. It is very common for those of us with one autoimmune disease to accumulate many more. I also have hypothyroidism, & ulcerative colitis (UC). All autoimmune issues. We are all so much alike with these issues due to the main culprit being PBC. But yet, we are so different. As always,

Stay Strong❣️

Shannon

stage 4 PBC, F4 cirrhosis, Grade 2 varicies

Plus a lot more craziness 🙄🤔

[Skypony in reply to Shulsey]

Hi Shannon

Thank you for sharing this. I too have several autoimmune illnesses, but I hadn't realised that quite a few of us have nerve ending problems.

Thanks for the encouragement and I'm so sorry that you have all those things to cope with, but it sounds like you do a great job of staying cheerful! All the best.

[BethRL]

Hi All

I made neurologist appt. A big but, the pain subsided to almost stopped. Started

B12 not much changed. I went and bought a multi vitamin w complex B

And seperate alpha liporic acid. I only feel slight.

I read A D E K are affected with PBC and or URso intake

I think that’s what happened. Early but feeling better.

[Skypony in reply to BethRL]

Great to hear you're feeling better! I take a multi vitamin but I'll look into ALA as well.

[BethRL]

Still slight tingle. Made appt neurologist end of April only available. I shall see.

Be well. Rhonda

[Hidden]

Hi Skypony, only just seen your post re neuropathy. I have it. Neurologist prescribed B12, Vit D and calcium. I have intramuscular B12, *(hydroxycobalmin). Vit D from UVB unit. (a therapeutic dose/exposure calibrated on my skin type) and calcium through diet (plant based).

Until I read your post, I had thought my neuropathy was associated with past chemoradiation. Like you say, I feel there is something underfoot when there is nothing. Also, and maybe not connected, I get occasional sensation of water (when there is none) dropping on my skin. This is usually on back of either of my upper thighs but can be elsewhere. I have also felt unsteady on feet, off balance. All this is much better since B12, Vit D etc., tho I still sometimes think there is a tissue in my shoe or boot and have to take it off to check.

* I don't feel my best for a couple of days after this shot. I wonder if this maybe due to the body having to convert hydroxy to methylcobalamin. Methylcobalamin is more expensive than cyanocobalamin or hydroxycobalamin.

[Skypony in reply to Hidden]

Hi 220681ok

Thanks for sharing your interesting experiences, and I’m so glad the vitamin treatment is helping you. That cause was ruled out for me, and my autoimmune diagnosis was a default in absence of the other more common causes.

The feeling of having something underfoot is so weird isn’t it? But fortunately my neuropathy is mostly fairly mild now (after the acute onset phase) and I try to ignore it.

PBC/neuropathy haven’t been linked far as I know, but I raised the topic because of possible autoimmune connections.

Do you have a PBC diagnosis, and how are you feeling in general?

Best wishes

[Hidden in reply to Skypony]

Hi Skypony

Thanks for your reply and enquiry. You are the first to mention AI/neuropathy as far as I remember. My PBC-diagnosing consultant referred me to Neuro Consult who diagnosed neuropathy and prescribed helpful treatment. Chemorad could in my case have been the cause and no doctor mentioned a connection with PBC. However,

https:/ncbi.nim.gov/pubmed/8151101 ... !

and lots more probably!

Isn't it likely that doctors have far more than enough to do without speculating on cause where there seems to be no advantage in knowing, even if it can be known for sure? Mine is better but not gone and heat sensitive. Wool socks night and day summer and winter.

I try overall to live in peace with PBC doing/avoiding whatever for my best. That includes not obsessing about details (tricky - I need to know stuff to do the best for myself.) This forum is really helps with this.

PBC I put under two categories, weather and climate. Bad days or spells, flares etc being weather, ongoing process being climate! This helps me feel less at sea, and helps if I absolutely have to tell anyone how I am. Today the weather is ok after a bad spell.The climate is steady but on a very slowly deteriorating trajectory. But ageing does this to everyone, PBC or not?

My body is out of sync with me, I have more strength than has my body. I'm aware that I'm lucky to have enough to eat well, to stay warm, and inspite of autistic tendencies, good enough connection to others to have all I need or could sensibly desire! I'm so glad to have retired myself though it is painful to hear how people are working with this condition, and not getting paid enough to live on in any circumstance, far less than with challenges PBC gives.

The PBCF is a big part of my wellness with its balance of dependable info and caring. I'm not good at communicating with people but they're so good at it it's not a prob for me. Have I have answered your question, and did I over-answer?.

What about you? How are you generally? Has PBC shown you any strengths or weaknesses that you didn't know you had?

Best wishes

[Skypony in reply to Hidden]

Hi, your weather analogy is a great way to make sense of day to day variations in how you feel!

I mostly cope ok thank you, but my greatest challenge is fatigue. Always a balancing act. And I think my neuropathy tingling is worse when I have a viral illness like a sore throat.

That’s an interesting question about what we learn from coping with PBC - i’d say I definitely appreciate the good things in life more consciously, and pay more attention to the stage I’m at in my life.

Best wishes