Pbc/Aih

[janine541]

Does any body struggle with really bad feet pain. And struggle to walk on them in a morning

[Hidden]

Yes I struggle with feet pain. It just started not to long ago. My knees hurt too. I am thinking it’s prednisone or AZA or the diseases. I plan on talking to my dr about it. I know that I’m not dehydrated

[janine541 in reply to Hidden]

I sopke to my gp. Although i often just see my consultant. And he said their is nothing wrong just joint pain ad to take paraetamol. This does nothing.

My consultant wanted me to go on steroids but i refused after lustening to my dads advice. Hes a nurse.

[Hidden in reply to janine541]

Do you know what your alt is

[janine541 in reply to Hidden]

I havent had my bloods done since i have seen my consultant is that the liver abnormality

If so they range from 160 to 320 on ursalk

[Hidden in reply to janine541]

You need the steroids my friend. You have to weigh the positive vs the negative

[janine541 in reply to Hidden]

Yeah have you had the steroids. My dad says it causes other problems

[hettie01 in reply to janine541]

Hi... My consultant said I'm not to have steroids as it can make the liver worse... Everyone seems to give different advice.. I am on m. S. T for joint pain it helps a little x

[Alley27 in reply to janine541]

Hi I have not posted on here for a very looong time.....I also have the painful feet...but I do stand for long periods of time...Regarding steroids....I took the horrendous things for 3.5 years due to my AIH/PBC and managed wean myself off of them 18 months ago and I am so glad I got rid of them. I had the horrendous moon face, my bones have thinned and I put on three stone, which I am still battling to get off. If I could change things I would never have taken them in the first place. I also want to stop the other drug I want to get rid of is the 6 mercaptopurine. This is a cyto toxic chemo drug in place of azathioprine . Chemo is dangerous long term for everyone especially when one does not have cancer. I am so fed up with everything regarding my illness at the moment and am most angry with myself because it's stopping me doing the things I want to do. I also work full time and my job involves a lot of travelling which just makes the tiredness worse.....I just want to be well like everyone and I am astonished that there are no newer less invading treatments yet.

Alley.

[LisaC22]

Any chance you wear very flat shoes or shoes with little support (eg the dreaded uggs)? This was my problem. Bought supports and try never to wear flats. I’m much better now.

[Hidden in reply to LisaC22]

It’s more of a sore feeling. Like I need a massive massage. A lot of us have this.

[janine541]

Ive tryed all different shoes but thankyou

[janine541]

Oh mines pain not a sore feeling x

[Hidden in reply to janine541]

What is it

[janine541]

Hi its like pains in my ankles and under my foot

[Evaibrahim60]

Hi Janine. Yes I did and with me it comes in waves off and on.I have found out magnesium help. It stays for a couple of weeks as very bad but with some massaging it gets better. Also been diagnosed with rheumatoid!

[Pinkcrush]

Hi janina, I suffer with Plantar fasciitis, the pain is terrible but comes and goes, maybe ask your doctor about it,

Hope you get it sorted

[janine541]

I have he said paracetamol

[Yankeerose3]

Mine hurt when I first try standing on them in the morning too

[Yankeerose3 in reply to Yankeerose3]

I am told I have Plantar fasciitis... But what can we fo about it?

[emerich in reply to Yankeerose3]

Hi Yankeerose3

You can get special insoles for plantar facilitis, ask your gp or maybe a chemist. I believe they are very effective. Think they're used long term.

[GrittyReads]

I'm so sorry you are having to put up with this, and I do think your Dr should be more sympathetic. I also don't imagine they should be suggesting steroids without knowing exactly what is going on, and why you might need them.

If the pains continue, or get worse - and especially if it moves to other areas: knees, hips etc. - go back to the Dr and insist on being checked for other conditions.

Lots of people with PBC do have all sorts of joint pain. This used to be ignored or poo-poohed by medics, but - after the recent large UK study and debate on the diagnosis of PBC - joint and muscle pain came out top of the list of symptoms. (NB You can get details of this study, and the full publication that followed, plus the 'PBC Foundations' 8-page summary, from the 'PBC F's' website - see link to their site at the top of this page).

PBC can cause a drop in Vitamin D, which can lead to low absorption of calcium, so that may need checking. Also, there are other conditions, autoimmune and otherwise, that can cause such pains. It does need to be followed up.

Sadly, I have found, from personal experience, that we need to be our own best experts on PBC and learn as much about it as possible - but from up-to-date and reliable sources (much of what it on the internet is out-of-date and overly scary. So I would study the 'PBC Foundation' site, as well as all the documents on there - in particular the summary of this recent formal/official study. I would also contact the 'PBC F' and ask their advice: there are email and phone links to talk to their advisors, on the website.

Hope this all helps.

Take care, Gritty

[pbcgirl]

Sounds like plantar fasciitis. The only thing that worked for me was laser therapy.

[DrDizzy]

I do! Not just in the morning and it’s not plantar fasciitis. It wasn’t so bad when I was on prednisone, but I’d rather put up with the pain than start taking pred again

[janine541]

Yes im gonna talk to my gp and consultant

[nomorepies in reply to janine541]

I too have suffered with terrible pains in my feet. Was referred to rheumatologist who ruled out any rheumatoid arthritis, plantar fascitis also ruled out, feet were so painful I was referred to consultant podiatrist. He had xray of my feet done and immediately identified that I had short metatarsals, he prescribed custom fit insoles and it has transformed my life. He also recommended I choose shoes with rocker soles and wear them with the insoles in order to keep pressure off the metatarsals. No more high heels or fashion footwear but worth it to relieve the pain.

[W_larks]

I have awful foot pain but I’ve developed boney growths that’s what they look and feel like , mainly on the inside of my feet ? Anyone else had this ?