Pbc/Aih: Well i see my consultant on thursday... - PBC Foundation

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Pbc/Aih

janine541 profile image
12 Replies

Well i see my consultant on thursday. So carnt wait. Tryed some vitamins including vitamin d.

I have had nothing but pain in my feet and legs and have no patience and energy.

I find i am pushing my family away because i have no energy to do anything.

Does anyone feel like this

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janine541 profile image
janine541
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12 Replies
butterflyEi profile image
butterflyEi

Hi janine541

Yes I can empathize with your comments. The pain in my feet and legs has been diagnosed as peripheral neuropathy. One doctor told me it was bad luck but a second opinion was sought and doctor prescribed neurontin AKA gabapentin. Although it is not a PBC symptom I am of the opinion that it can be something those of us with PBC may suffer from. I have recently read an article shared on another site about long term damage from various medications and Simvastatin was on it. I have been on Simvastatin for many years.

I have found listening to meditation and visualization recordings on YouTube help me sleep better however I understand from many other contributors that it is not unusual to be depressed which is why you may find you have no patience with the family. For myself I take a low dose of an antidepressant to help control the itch but I have found it has helped my mood as a beneficial side effect.

Hope your specialist can help you. Have you written a list? I find it helps me stay on track.

Come back after your appointment and let us know how you get on.

Best wishes

janine541 profile image
janine541 in reply to butterflyEi

Hi butterflyie

I dont feel depressed. Just totally no energy and it is an effort to do anything on my day off and feel i lose patience with my husband because my family need me around all the time and he fights for my attention and feel i need to hybernate.

So tored and in pain with my legs its untrue

Amw271965 profile image
Amw271965 in reply to butterflyEi

I'm new ,so hello 2 all. Re: the no patience, no energy, itch. May I ask what what antidepressant u use @ a low dose?

butterflyEi profile image
butterflyEi in reply to Amw271965

The mixture of drugs prescribed for the itch includes sertraline of which I take 25mg I can go up to 50mg a day but I am trying to keep it at 25mg.

hope this helps

janine541 profile image
janine541 in reply to butterflyEi

X

janine541 profile image
janine541 in reply to Amw271965

Hi i dont take an anti depresent at all

mjk98 profile image
mjk98

Yes my doctor just put me on a new drug called 6MP and predisone which I'll taper off the predisone after 3 weeks that's for the autoimmune disease. I had to take certain blood tests before I could take it now we'll have to take blood test in another two weeks for him to see my numbers again 6mp or some kind of a medication that was also given for people who have cancer... I know how you feel because my bones kill me right now they're much better because of the predisone but I'm not staying on predisone so it seems when I go off of it my bones start to really hurt... I'm supposed to be taking URSO but I happened cuz I can't take all this medication makes me sick

janine541 profile image
janine541 in reply to mjk98

Yes i have had to have a liver scan to see if i can have a steroid not sure about this as i dont want to gain loads of weight.

My dad is a nurse and he said long term it can cause more problems too

mjk98 profile image
mjk98

I know that's why I refused to take the predisone but I have to and it's a lower dose only for 3 weeks last time it made me gain 10lbs I am still trying to get off...ask your Doctor about 6mp drug

janine541 profile image
janine541 in reply to mjk98

I will thankyou

My-life profile image
My-life

Yes I do. And then feel guilty. Hang in there.

janine541 profile image
janine541

Thanku

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