Finally had Hepatology appt Today after 3 months of waiting.....

[Ktltel]

Hi all,

I was diagnosed by my GI doc on 10/10/16 off of high LFT's including positive AMA- M2. Took URSO for 3 weeks and got really sick. Was taken off Nov. 1st. 2016. (Changed my diet, started seeing a naturopath and a wellness Dr. too.) Had a biopsy on 12/1/16 which came back no PBC damage, but mild fatty liver. Since then no dairy, no sugar, low sodium, only eat very low fat, no simple carbs, no gluten or wheat. Whew! It's been tough but since I can't take URSO just trying to do anything I can to help my liver. I eat lots of spinach and kale, carrots, peas, sweet potato, lean meat, low sugar fruit and I drink beet root juice, coconut water, and almond milk occasionally. *Finally had my liver specialist doctors appt TODAY Feb. 8, 2016, ......He said I'm considered early stage in PBC as it's showing up in my "blood work" but hasn't caused anything they "can see" in my bile ducts or liver as of yet. This would be excellent news if I could take URSO. But I can't. He said PBC progresses differently in everyone. So.... as far as mainstream medical doctors go... It's a "wait and watch" game. Blood work every 3 months. Basically, wait and watch PBC progress and deal with symptoms as they arise. The only symptoms I have right now are ache in my liver once in a while and mild fatigue. He wants me to try the URSO again at 1/2 the dose and slowly work up this time. If I have the same reaction, he will try another URSO that is made with different fillers. We will see. 😧 In the meantime, I guess I'm not a wait and watch type of person. If this PBC is early, as in, only showing up in my blood work, and PBC IS a autoimmune disease, then I'm gonna fight it every way I possibly can right now!

My naturopath has me on liver supplements, I'm eating a liver friendly diet, and I started LDN (low dose naltrexone) 3 weeks ago. Soon to follow is incorporating Alpha lipoic acid supplements in there too along with vitamins. My game plan is to fight the autoimmune disease. I just don't want to "treat the symptoms" of PBC. I know there are others of you out there like me who also can't take URSO. Just know, there is still hope.

❤Stella

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[spenney1]

Hi kttel. I don't usually post but I had to when I saw your picture . You are a lovely lady and you look so radiant.

l lost my mum to pbc just over four years ago . Please read my post . I really hope that you can find the strength to take the urso, I know that it is a horrible medication to take as my mum hated them . But my mums medication was stopped for some reason , and this is when my mum started to really deteriate. After being off the medication for 18 months she died . I feel if she had have stayed on them she would be here now.

please just try as they do help it to stop progressing . Stay strong and feel free to ask me anything.

Thinking of you and best wishes x

[Ktltel in reply to spenney1]

Hello spenney1,

It's not that I don't want to take the URSO, I had an adverse reaction to it and was taken off by my doctor. Now, they want me to try it again. So I am. But in addition, I'm widening out my strategy to fight PBC by including naturopathic supplements as well as diet, vitamins, and Low dose naltrexone and soon Alpha lipoic acid too. I'm sorry about your dear mother. If it's any comfort, this scriptural verse has always given me hope.

(John, 5:28+29)

Hugs

Stella

[Michiganpbc in reply to Ktltel]

I just read this about your reaction to URSO maybe try a different brand?

[Ktltel in reply to Michiganpbc]

Michiganpbc,

That's what I told my specialist. Let's find another brand. But he's putting me back on the same bottle that I didn't finish back in Nov. Just a lower dose for now. I'm not starting it until next week. Doctor's know best?? I don't know.

[Carol60 in reply to Ktltel]

I had the most horrid reaction to the full dose of URSO when I was first diagnosed. They started me on the full dose and it just about killed me (well, that is an exaggeration, but it made me violently ill, unable to hold down food, serious diarrhea, cramping, itching etc.) My liver specialist took me off Urso for several weeks and we restarted a slowly increasing dose (250mg/day for 1 week, then double the dosage each 2 weeks until I reached the 1000mg dosage per day for my weight.) I found I have been able to tolerate this dosage of one specific type/brand of ursodiol (branded Actigall) now but other generic brands cause problems. My LFTs have improved over the past 3 months on the full dosage. Perhaps you can try a slowly increasing dose of the URSO and see if it works for you like it has for me? I have been trying to watch my diet so I will try some of your dietary suggestions. Take care and keep us posted on how things go.

[Ktltel in reply to Carol60]

Thanks Carol60. I will.

Stella

[spenney1 in reply to spenney1]

hi Stella . I'm in the UK and its probably different . But whatever you are doing you are doing it well . Your beautiful. Look after yourself and take care.

Best wishes x

[Ktltel in reply to spenney1]

spenney,

Well, thank you. I'm very overweight. I'm trying hard to eat right and do all I can to build up my immune system right now. Trying to lose weight too. Gonna try to restart the URSO in a week or so.

Stella

[Michiganpbc in reply to spenney1]

So sorry for your loss why in the world would they stop the medication?

[spenney1 in reply to Michiganpbc]

hi michiganpbc

so sorry for the delay in answering your question . But I ask myself that all the time. This is why I insist for people to take the medication as it really does prolong your life . If it is is stopped for some reason please insist that its not . Because my mum didn't proceed with the urso . 18 months later it had progressed to ciroses of the liver. It first started witha corn on her toe . This is when we first noticed a leg ulcer then swollen legs . Also confusion water Infections . This was all put down to dementia . Six weeks before she died she was in hospital . She was put back on the urso . Her leg ulcers started to improve and her legs returned to normal . But it was to late as this horrible disease had now taken over . I watched my mum take her last breath and thank god everyday that I had my beautiful little mum for the first 43 years of my life and that she was no younger than79 when she died .

Take care and thinking of you .and sorry for the delay .

[Michiganpbc in reply to spenney1]

So sorry I am shocked by this the urso makes me a little sick not as bad as before they changed it but I still make sure I take it everyday.

[Ktltel in reply to Michiganpbc]

In what way did they change it? Your URSO?

Stella

[Michiganpbc in reply to Ktltel]

They changed the brand there are two here I tried one brand for 6 months didn't feel good started the new one 2 days ago feeling a little better on this new one but still side effects pain bloating spasms liver pain

[spenney1 in reply to Michiganpbc]

I really hope I havnt scared you or anything . As long as you take your medication you can have a normal life. I just wish that I knew then what I know now .

Thinking of you .

[LisaC22]

Hi Stella. When you last took the URSO, did you spread it out throughout the day or did you take it all in one go? It's recommended to take it 3 times a day at the start and after 3 months it can be taken all in one go. What about obeticholic acid (OCA or Ocaliva)? Did your doc mention this? It's actually for non-responders to URSO rather than your situation but maybe it's an option. You are lucky in that its available in the US. Unfortunately it's not in UK & Ireland just yet. Just a thought.

[Ktltel in reply to LisaC22]

Hi LisaC22,

Yes, they had me split the dose up twice a day and to be taken with food.

I'm gonna give it another go. We will see what happens. But I'm also doing other things to fight this battle with PBC. I just want to try to get to the root cause. Autoimmunity.

Thank you too for your reply

Stella

[Sylvia1968]

Hi looking fab mrs xx

[Ktltel in reply to Sylvia1968]

Hi Sylvia1968,

I am feeling better. The appt yesterday was positive but he really disagreed with me doing anything natural and by supplements. I'm still working on this weight! How are you feeling these days?

Stella

[Sylvia1968 in reply to Ktltel]

Not getting anywhere with specialist at hospital now shes left and been appointed a new doc so hes wrote to say we will start from scratch again 😠 still feelingtired n itchy but iv started taking they lipoic acid and tumiric capsules and a dnt no if its in ma head but not feeling jst as tired and itch and using a natural cream and its helping itch so rash clearly fingers crossed 🖒 xx

[Ktltel in reply to Sylvia1968]

Sylvia1968,

I just ordered a book about alpha lipoic acid by Bert Burkson. He has a regimen in there for autoimmune disorders. He also talks about LDN in there too. I'll keep you posted. I should get it today.

❤

Stella

[Sylvia1968 in reply to Ktltel]

Yeah av seen that in that other book i curing cortney her mum took her to see bert burkson personally av seen his book was going to order that too did u ever read the curing cortney one a told you about ? Xx

[Ktltel in reply to Sylvia1968]

Not yet. But I will order it!

Stella

[butterflyEi]

Hi Ktltel

Well whatever you are doing it must be right, you are gorgeous.

On a serious note early medication to slow PBC down seems to be the only answer available for this auto immune disease. I hope you are able to tolerate it once you re introduce it slowly to your system.

best wishes

[Ktltel in reply to butterflyEi]

Thank you ButterflyEi,

I'm feeling better. And I am going to give URSO another go in about a week. How are you feeling these days?

Stella

[butterflyEi in reply to Ktltel]

Hi Ktltel

truth be told I was hoping the introduction 10 days ago of rifampicin would stop the itching, it is better but unfortunately I now itch in more places than before but at least not with such depth. thank you for asking it is so good to have the support.

best wishes

[Ktltel in reply to butterflyEi]

ButterflyEi,

Why is it they can't find anything to truly help with the itching? So many suffering with it. I'm so sorry you're going through that. I pray you get some relief soon.

❤

Stella

[Michiganpbc]

Hi good to see you look so healthy I love it! Have you tried changing brands of URSO? I had to do this recently I had nausea and worsening pain since the change of URSO brands I am much better still havevright upper belly pain but I have had that for years this was my first symptom of PBC.

[KatherineM_PBC]

Hi Ktltel. You have really 'hit the ground running' with your positive approach to beating the auto-immune condition, rather than as you say, wait for the symptoms to treat. I have had PBC for 4 years and when initially diagnosed was given no information from the Gastroenterologist about even the most basic changes to diet and lifestyle. It''s only by reading, online and books, that I have been able to educate myself on the benefits of a gluten free diet. I saw a Nutritionist who recommended a very good quality pro-biotic to support my gut (do you know the leaky gut theory?) and Vit D as I was a bit low there too. I would be very interested to know what supplements your Naturopath recommends for you?

[Ktltel in reply to KatherineM_PBC]

KatherineM_PBC

I don't always feel like I'm doing everything I can. Or double checking myself enough that my regimen for taking care of myself is correct. I too had to research and ask questions, find the right doctors, naturopaths etc. All while having anxiety and feeling sick. A good friend of mine, an RN who had cancer years ago told me... "Stella? You have to be in charge of your own health. "

So, I try to learn, ask questions, and take healing protocols from many scources. I check and double check supplement and drug interactions as well as leaf through a few books some have recommended here on this forum. And, about this forum, it has proved to be so valuable to me. I've learned so much here! And, there is great support here too as you probably know well. ❤

But, I guess after I wrapped my head around everything, and pulled myself out of the panic and depression I went through back when I was first diagnosed, I got busy.

YES, I'm a firm believer in the leaky gut theory. Just a side note, I was so overwhelmed with everything in the beginning. For me? I prayed! I prayed for guidance and wisdom to find answers and doctors, information, or even "people" with information that could help me sift through the useless stuff and find out the truth. And I thoroughly believe my prayers we're answered.

So, yes, I started with fixing my gut! I found a great naturopath (there are quacks out there, watch out.) Plus an M. D. who supports my also seeing a naturopath. My hepatoligist though, made it clear he is NOT in agreement with me doing supplements. (Even though I like him, supplements are about $120 every 6 weeks for me. Where as a liver transplant is $400,000. You get what I'm saying?) There is no real money for my hepatologist in stringing me along keeping me healthy as I can be with PBC. Medical doctors for the most part use drugs to treat the symptoms. I'm OK with that. URSO is saving lives! I just made a choice to marry the best of both worlds. Medical AND natural. So with all that said, (whew, you thought you asked a simple question. Lol) here's what I take and what it's for.

First the Naturopath stuff:

1. GI-Revive by designs for Health Inc. (For leaky gut)

2. Lipotropic Complex by Intergrative Therapeutics (For comprehensive liver support)

3. Superadrenal by Ancient Formulas Inc. (For fatigue)

4. Yeast Formula by Intergrative Therapeutics (For candida)

5. HMF Forte Probiotic supplement by Genestra Brands (For candida)

6. Alpha Lipoic Acid (haven't started taking this yet. Just reading about it. Taken in conjuction with low dose naltrexone, there have been very positive results for autoimmune diseases including PBC.) Google it as well as Bert Burkson M. D.

Prescription stuff:

1. LDN (low dose naltexone) 3mg once at night. (For inflammation, Immune booster, energy, relief from some pain, and "feel good" feeling. It has an effect on endorphins.

2. URSO 500mg 3 times a day. (Starting back on it in 2 weeks) Initially, back in Oct. 2016, I got super sick on it. They took me off in Nov. 2016.

Sorry for the long post. Hope this helps.

Stella

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[KatherineM_PBC in reply to Ktltel]

Soooooo much info to look through there, thankyou. I will PM you today xx

[Ktltel in reply to KatherineM_PBC]

KatherineM_PBC

I forgot to mention ..so important, my naturopath did a comprehensive allergy test on me too. I eat the PBC diet (PBCmeals.com) but I steer clear of what I'm allergic to AND no gluten, dairy, wheat, animal fat, sugar, (that one really hurts, I love candy) and I eat very low sodium. I'm used to it now and I've lost 66 lbs. since Sept. 2016. I had it to lose! And shamefully, more to go. 😳

Stella

[Ktltel in reply to KatherineM_PBC]

Sorry, that web page is

Pbcers.com menu and meals