Alternative pbc treatment if can’t take Urso or Ocaliva

[Gangee]

What can I take for pbc if I can’t tolerate Urso or Ocaliva?

[mrspeffer]

Good morning. Your doctors are probably saying these are the only choices for you, that they do not have anything else. I'm in the same boat as you. Allergic to URSO, and not interested in the side effects of OCALIVA. So, I went to a naturopathic doctor. After reviewing my complete labs, we came up with a plan. The main part was milk thistle and a product by Standard Process called Livaplex. I have also done many cleanses over the years. While my "numbers" are not improving much, I am showing no fibrosis, no fatty liver, few symptoms, and feeling rather well most days. Do some research in your area for an alternative doctor to talk with and then decide if this is the path for you.

[SunnyXXOO in reply to mrspeffer]

I think I did the livable when I was first Dx. I had it sent to me from a physical in England. My number would not improve.

[SunnyXXOO in reply to mrspeffer]

What about Functional Medicine, Cannabis Oil, and a good CBD.

SunnyXXOO

[mrspeffer in reply to SunnyXXOO]

Hi...from what I understand, CBD's are different from hemp oils on the internet. There is a person on this site who sources CBD's in England...if I can find the post, I will sent it along. Be well

[SunnyXXOO in reply to mrspeffer]

SOL-CBD from England is a Superior product. I think Stella has a good CBD also, haven’t compared yet but I will this afternoon.

SunnyXXOO

[Ktltel in reply to SunnyXXOO]

I'm looking for one....

[SunnyXXOO in reply to Ktltel]

SOL-CBD - This lovely couple are very didicate to harvesting the best CBD

SUN XXOO

[Ktltel in reply to SunnyXXOO]

Thank you.❤ Definitely keeping it in mind for sure.

[Jlruggie in reply to mrspeffer]

I’m interested too

[SunnyXXOO]

I can’t take Urso or Ocaliva, Dr Burt Berkson in Las Cruses New Mexico treats my condition. Burt put together a plan for me to bring back to Plymouth, Ma. to Dr Glenn Rothfeld integrative physician.

I see Burt every couple of months, I have apt with him Oct. 4, 2018. Were hoping we got down to the root of problem, currently my number are lower then they have ever been in a very long time.

Daily Regiment:

1) 600mg Alpha Lipoic Acid IV 3-4x’swk

2) Vit B12 or Complex (ALA depletes B’s do we have to take place.

3) P.O. Selenium daily

4) B’s daily

5) Vit D ( I was low)

6) NonFish Oil daily

7) daily Vit

All supplements are from Metabolic Maintenance Brand (except nonfish oil). Dr Berkson only used Metabolic Maintenance supplements, because no fillers added.

I also use CBD (SOL-CBD) from England, and I have Medical Cannabis license.

The Cannabis stop s/s of PBC in its tracts.

Also, there is a physician Dr Dustin Sulak in Falmouth Maine, he is very knowledgeable about cannabis and dosing, plus he a great physician. If anyone has time look him up. He world renowned.

SunnyXXOOO

[DRK1960 in reply to SunnyXXOO]

What do you mean by the cannabis stops s/s of PBC in its tracts? I don’t know what s/s means. Thanks.

[SunnyXXOO in reply to DRK1960]

Most important is it stops Pruritis (itching), increase appetite, keep anxiety and stress under control, helps you sleep and heals.

I was fine, until I was injured on the job (Hospital HA), broke facial bones and teeth. The stress and anxiety I went through to fix wounds, broken bones, and teeth was horrendous, kick liver issue out of control. I lost 21lbs.

Cannabis plant hold over 100 medicinal properties.

I don’t like the euphoric high you get form cannabis but I use a good CBD to of set the high from cannabis.

If you want to try a good CBD, try

SOL-CBD - I buy straight from England. If your interested look them up. If you do end up trying, try the original under tongue, the also have a great CBD Vape

[DRK1960 in reply to SunnyXXOO]

Thanks for replying. I could use some help with anxiety/stress/sleep. I certainly don’t want to increase my appetite. I take ursodiol and I started gaining weight. I now need to lose weight.

The fatigue is kicking me pretty hard. I have some hair loss and joint pain. But it’s the fatigue that interferes with everyday living.

Deb

[SunnyXXOO in reply to DRK1960]

Urso has nasty side effects !!! When I try to take Urso I lost hair also, the joint pain was bearable but rather not have it, plus Urso made me very sick.

I’m in the health field, I’ve tried everything. My body has a hard time with the Western medicine they through at you.

The fatigue is dreadful, I have more good days then bad, when I do have a bad day it mostly due to fatigue.

I’m lucky enough I can continue working, and better yet I’m Per Diem.

When I’m in Massachusetts I work in Boston Hospital and when I’m in Florida for winter I work per diem at Martin Memorial Hospital.

Can I ask you a question? Are you on neltrexone, and who many mgs.

SunXXOO

[DRK1960 in reply to SunnyXXOO]

No, Urso is all I take. I’ve got an appointment coming up this month with the NP. She’s never had any suggestions for the fatigue other than to walk and lose weight.

[SunnyXXOO in reply to DRK1960]

1) Exercise

2) Eat well, Palo is a great way of eating and great nutrition.

3) Rest, if you need a nap, treat

yourself

4) Stay hydrate.

5) When shower don’t use hot water,

trigger itch, use good soap like

Cutve’.

6) Hot, spicy/hot foods will trigger itch.

7) Hot Humid weather tigger itch.

Im sure you have done research on PBC, lots to learn.

Sun

[SunnyXXOO in reply to DRK1960]

I tried taking Urso but the side effects where horrible - thinning of hair, weight gain, joint pain, nausea/vomiting, and fatigue, but fatigue is common liver issues.

Love, Graditude, Peace and Love.

SunnyXXOO

[SunnyXXOO in reply to DRK1960]

Oh, I can’t take Urso

Sun

[SunnyXXOO in reply to SunnyXXOO]

If NP orders neltrexone, request only 3 or 4 1/2mg. Unfortunately my liver Specialist gave me 50mg, I took for over a year. 50mg will cause further damage to liver. Burt Berkson changed to 3mgs.

Unfortunately Urso cause wt gain.

The fatigue is ruthless, I just keep going until I hit a wall, then I’m out of commission for a couple to a few days.

I walk 4X week, hit the gym few time a week, I had to hire trainer when I lost all that wt, lost a lot of muscle mass also. Rebuilding muscle is very difficult and it hurts 🙂, I will never let that happen again (if I can help it).

There is a great anti inflammatory supplement, it call Cucurplex. It turmeric but this brand is pure and potent.

SunXXOO

[SunnyXXOO in reply to DRK1960]

S/s = signs and symptom.

Thanks

Sun

[Lisabette]

I was diagnosed a week ago and have been taking Urso. It has been vile. Acid reflux, constipation and my stomach is in knots. I’m waiting for my doctor to call me back. I hope there are other options.

[DRK1960 in reply to Lisabette]

I take the Urso with food. It bothered me at first. I think I was just eating a cracker or something light. Then I started taking it with a meal and I’ve done ok with it.

[Lisabette in reply to DRK1960]

I had to await the AMA test results which were positive. The Dr is going to prescribe another med. I don’t want to continue to try Urso, it really tore up my gut. I still felt burning for four days after stopping it. I don’t tolerate coffee or lemon too well either so I’m not surprised. I was taking it with food.

[DRK1960 in reply to Lisabette]

I’m sorry it caused you pain. I wouldn’t be able to tolerate that either.

[Lisabette in reply to DRK1960]

Thank you. I’ve been approved for the new meds but haven’t received them yet.

[gwillistexas in reply to Lisabette]

Lisabette...is it OCA you’re waiting for? I hope you will have a pleasant experience as I have. Let us know how you get along with it😊

[Lisabette in reply to gwillistexas]

Yes that’s it. I still haven’t received it but it is approved and my copay is covered by a special program so I’m happy about that.

[gwillistexas in reply to Lisabette]

I think anyone who takes it has to have assistance. I had help from Interconnect Services. They saved me😊

[SunnyXXOO in reply to Lisabette]

Does anyone know what Urso is made of?

Sunny ☀️

[Lisabette in reply to SunnyXXOO]

My understanding of it is that it is a bile acid that isn’t toxic so it dilutes the toxic acid being released into the liver.

[SunnyXXOO in reply to Lisabette]

Polar Bear ! Damn BIG PHARMA

[SunnyXXOO in reply to SunnyXXOO]

Urso =polar bear bile

[Aussielouise in reply to SunnyXXOO]

Urso isn’t from bears! It’s an artificial manufactured bile. Your right in as much as It was originally developed from bears bile, but not polar bear bile.

[SunnyXXOO in reply to Aussielouise]

It is common knowledge the use of Polar Bear bile in Urso. Somewhere along the way polar bear was made obsolete, currently using black bear instead => You can read all about it.

Sun

[SunnyXXOO in reply to Aussielouise]

Hi Aussie,

Sorry to say, but years ago when Urso was put out, they did use polar bear bile in Urso. Read way back about Urso

Sun

[gwillistexas in reply to SunnyXXOO]

True👍

[SunnyXXOO in reply to gwillistexas]

🙏🏻💫

[tonia66]

Sorry, it’s been a busy fall,,,

I know there are other medication cocktails I’ve read about....do some research and talk to your doctor. I’m sorry I can’t remember what they are,,,

[DRK1960]

Thank you. I’ll ask about the neltrexone. If she’s ok with it I’ll make sure it’s a small amount.

I feel like I would be ok if I didn’t have the fatigue.

I’ve heard that exercise will help the fatigue but jeez...I’m too fatigued to exercise.

And I know exercise might help with weight loss or at least just make me feel stronger? Or will I be more fatigued? I’ll never find out though until I start moving more. I’m just going to force myself to do it and see if it helps.

Thanks for helping.

[Lisabette in reply to DRK1960]

I have found that gentle exercise is energizing, but when I overdo it I have flare ups of inflammation and need even more rest. Rest is everything. Lay down for ten minutes when you’re tired, take naps if you can and go to bed early. Rest combined with walking and gentle yoga or Pilates helps me feel more energized.

[DRK1960 in reply to Lisabette]

Thank you. I overdid it on walking when I first started. I’m going to take it slower now.

[DRK1960 in reply to Lisabette]

Oh, my vitamin D was deficient. It was 8 so I’m taking Vitamin D3 once a week for 10 weeks then having it checked again. The NP said it should with fatigue, joint pain and the hair loss.

[Lisabette in reply to DRK1960]

I take 2-3 B-complex a day and that seems to help with hair loss and recovery from fatigue. Plus I take vitamin C in the form of Airborne chewable, like 2-3 a day, it helps my immune system, fatigue recovery and not getting sick. I also have natrothroid (thyroid) prescribed by a naturopath. I take other stuff but those are the most essential.

[DRK1960 in reply to Lisabette]

I’ll show this to the NP when I go back. I’m going to ask her to keep checking vitamin levels. Vitamin deficiency never occurred to me...someone on here mentioned it. This is a great place for help and ideas.

[SunnyXXOO in reply to DRK1960]

It tuff, the fatigue is relentless!!!! My husband and I go to the gym or walk almost everyday, it gets easier once you get out there and make it a habit. Take baby steps, It takes 8 days to create a habit.

Don’t forget about your nap after workout.

Sunny

[SunnyXXOO]

I’m a also a non-responder to Urso, currently I am working with Intergrative Physicians and Functional Medicine Physicians.

Functional Medicine, Alternative or Ayurveda, are good choices.

Ayurvedic is a system of medicine with historical roots in the Indian subcontinent. Globalized and modernized practices derived from Ayurvedic traditions are a type of alternative medicine., great medicine but healing very very slow.

Have you ever read “Alpha Lipoic Acid Breakthrough” or “Honest Medicine”? Great read and great resources.

SunnyXXOO