Immune suppressants?

[Wocket]

Can anyone tell me why immune suppressants and steroids do not help with PBC. As it’s our own immune system attacking you would think that suppressing it would help. Obviously I know doctors are right I just wondered why. Another thing I wonder about is when electronics go wrong turning things off and on again fixes it so many times. Do you think they could turn us off and on again to reset 😂

[Kate50]

Hi wocket, you have my kind of brain these are the kind of things I think about and I’m sure I have asked that question before, just wish I could remember the answer 😂😂😂

[Wocket in reply to Kate50]

I’m lucky if I can remember what I had for breakfast. 😁

[Pamela4475 in reply to Wocket]

I do have memory issues but I’m also old.... 67 last month diagnosed at 2017... so what was I talking about??😂😂

[gwillistexas in reply to Pamela4475]

🤣

[Sandymh in reply to Pamela4475]

😂

[Yankeerose3 in reply to Wocket]

I wish I could remember, too. I took a shower then couldn't remember while I was getting dressed if I even did. Pitiful! I had to feel if the wash cloth was wet

[Hidden]

Hi Wocket, I love your questions and I like staying curious about our condition. I wonder how many researchers themselves have PBC?

Your first question, I was told initially by GI consult that if my condition advanced, I could be treated with immunosuppressants. I dont know if that was correct then or now. But I do wonder when I eat superfoods that are said to boost our immunity, is that for the best or are they just attacking me! It doesnt add up.

The second question, I'm switched of nearly every day! A cup of coffee switches me on but I dont get a full range of functions! The main switch hasnt been found yet. I'd like to know who if anyone is looking for it? It must be there somewhere or it couldnt have been switched off?

[Wocket in reply to Hidden]

Thanks for the info. It appears that the medical world know so little about treating autoimmune diseases. My brother has MS and very little help medically there. The problem with switching humans off is we are very difficult to switch back on. (Wonder if zombies have autoimmune problems)

[Hidden in reply to Wocket]

Ha! Maybe that's what zombies are, stage 5 PBC!

[Hidden in reply to Wocket]

Is it a big help to you and your brother, to understand the big issues of autoimmune conditions? Does he have a forum like this to share his concerns?

[Wocket in reply to Hidden]

My brother has had MS for about 30 years, thankfully slow moving, so I think he knows all he wants to know. I on the other hand am nosey so want to know everything. I have been diagnosed for a couple of years and was very shocked and felt very sorry for myself for about a year. I’m fine now but would love to know more about diet. I’m a vegetarian that eats well but worry that I don’t eat enough protein. How do you deal with things?

[Hidden in reply to Wocket]

I was in disbelief because of the mixed messages and the lack of any sign that wasnt connected to Sjogrens. Then I had resection of bowel after cancer and 5 years surveillance so I still was putting it all down to other causes than PBC. Now I am aware that it is PBC and that what affects some doesnt affect others so there's a need to go on looking for ways that work for me to be better. But life is like that? Anyway, I was vegetarian and have been vegan for a year almost. This has helped me a lot. I use a uvb unit for vitamin d and i see on this site that some people itch from uvb exposure, some dont. I can feel after one minute exposure that 'something' switches on in me. What I dont know, (only had unit since September) does that switch on do good. (I ask myself, if I keep igniting car engine, I may flood it and not start it because there's a fault I dont know about. Is it same with my body?)

I keep asking myself PBC questions, but it isn't what's most on my mind. Tho I do constantly have to be aware and cautious not to make myself worse, ie tireder, weaker, dry-skinnier, not going out-er, etc! I'll be looking out for how it is for you and I hope you find a way(s) to avoid worrying and you carry on sharing these.

[Sachin1234 in reply to Wocket]

You know lean meat once a day is very good for liver cells regenerate 🤗

[Wocket in reply to Sachin1234]

Some of us are wondering if Zombies are free from autoimmune diseases 😁

[Hidden]

Hi Wocket,

Im far from an expert , think that urso has shown to be the best medicine for pbc and immune suppressants can bring other issues.

I am on immune suppressants and had a few courses of steroids ,however that was because i was then diagnosed with AIH.

Take care

Angela

[Wocket in reply to Hidden]

Thanks for your reply. Thankfully I only have PBC so Justin Urso

[Sandymh in reply to Hidden]

Hi angel47

I was told I also had AIH and was prescribed steroids and immunosuppressents I can't remember how long I was on them but quite some time, before being told I don't have AIH.

I didn't think to question why and why not but got me curious now as to how they decide we have it or not have it after, as in my case. As I said, only curious, so time to Google for some answers.

I'm one of the fortunate ones as the only problem my PBC causes me is the dreadful itch which I've had continuosly since 2010. I'll be 72 next month, so hope I continue to stay as well as I am.

I hope you stay well.

[VeeWat in reply to Sandymh]

Is the itch all over or just in one spot? What do you take for the itch?

[Sandymh in reply to VeeWat]

Hi VeeWat

The itching is all over. I usually take Questran, but it's not been available for over six months now. My pharmacy was able to get me two boxes of Questran Light, but it's absolutely awful and worse to take than the ordinary Questran leaving a thick layer of the powder along my gums and back of my tongue as I'm drinking it. I also take Colesevelam tablets for it and have been taking them twice a day instead of using the few Questran Light that I had left, but it's not controlling the itch. It's so frustrating as the first few months of 2018, my itch had been so good and minimal for the first time since before my PBC diagnosis Oct 2010. I'm also on Urso, and I'm also prescribed Phenergan to help me sleep. Itching and scratching is s nightmare most nights at the moment.

Sandymh

[VeeWat in reply to Sandymh]

I hope it gets better. How is your bili and other blood?

[Sandymh in reply to VeeWat]

VeeWat, I don't know about my bilirubin, as it's never mentioned, although I have the results from OctI2011 which 18. To be honest I know nothing about bilirubin.

I only keep a record of my Alk Phos which is always high. I don't seem to have an average as it fluctuates so much every time. At diagnosis it was 1200. Two months ago it was 599 but more often in the 600s. In eight years it has never gone lower that 425...once in 2012 and once in 2016

[Biddyb]

Hi Wocket, I was put on Steroids several years ago as my consultant thought I had AIH as well as PBC (diagnosed 2008) he then wanted me off Steroids and Immunosuppress me which I was not happy with as all ailments would be heading my way and I would not have the immunity to fight them off. I tried once to take a course which made me seriously unwell so refused to take anymore. I changed consultant and hospital as I was not happy with my treatment and my new consultant weaned me off Steroids and doubts I ever had AIH overlap. It's so confusing personally I am sticking to Ursofalk which seem to work for me and will take my chance with sensible eating healthy living and one day at a time. Good luck with this confusing ailment

[Wocket in reply to Biddyb]

Thanks Biddyb for your reply and you are definitely right in that it is confusing.

[SunnyXXOO]

Steroids have one purpose “bring down inflammation”, that’s all steroids do. Oooops, and supress immune system.

That is it for steriods, no other purpose.

SunnyXXOO

[Sachin1234]

Well our system once get turn off there is a chance never turn back again 😁🤗

[mjk98]

I have pbc with overlap of AIH when they put me on the prednisone and it's the worst experiences I have that's why I am refusing to take prednisone because the minute I get off of it a month later my numbers go back up the only drug I'm taking right now is to 3MP drug which is usually given people who have cancer which I don't have and I still don't know why they gave it to me but I stopped taking the URSO at this point whatever happens happens I can't take all these drugs prescribed

[Wocket in reply to mjk98]

I understand that lots of drugs can make you feel worse than the disease. It’s all about quality of life and only you how you feel.