Low Dose Naltrexone anyone?

[KiwiPBC]

Hi, I was just wondering if anyone has tried Low Dose Naltrexone for PBC? there are so many clinical trials happening for all sorts of autoimmune diseases with LDN and many responding so well. I am asking as the fatigue and itching is driving me crazy. I am a full-time mother to a gorgeous little boy with cerebral palsy - my life is crazy busy is an understatement, so I am desperate to get more help in any way. thanks

[Ktltel]

Yep, hi. Been on Low dose naltrexone for 1 1\2 years. My PBC really hasn't changed. Actually I wasn't responding well to URSO so they started me on Ocaliva.

I will say this, I have RA. I was diagnosed with it in 2017. Stiff joints... bad. That manifested itself 4 months after my PBC diagnosis. So did De Quervain's syndrome. So, I was on URSO and then they started me on Sulfasalazine for the RA and wrist issues. About 6 months ago, my liver enzymes started to elevate. They took me off the Sulfasalazine. I was still taking URSO and low dose naltrexone. I was so scared my joint stiffness was gonna resurface within a month. So far no stiffness. Very mild in hips and knees only. Everything else normal for my age. I'm 59. My liver enzymes went back down with only my alk-phos being elevated and usual dry eyes. So, PBC still rearing its ugly head.

I guess what I'm trying to say is, low dose naltrexone may have not have helped with turning my PBC around, but I do feel better on it AND my RA hasn't returned. Those 2 things are a "win" in my book.

Stella❤

[gwillistexas in reply to Ktltel]

Stella...are you doing okay with OCA? Been thinking of you 😊

[Ktltel in reply to gwillistexas]

Sitting by the phone waiting on lab results. I feel ok. Its been 1 month I'm on OCA. I'll post my baseline from 30 days ago and new results when they call. Hope you are doing ok. ❤

[gwillistexas in reply to Ktltel]

I hope all will be good for you. No itch?

[Ktltel in reply to gwillistexas]

No itch on 5mg. 👍❤

How soon should I expect better results as far as liver enzyme numbers go?

[gwillistexas in reply to Ktltel]

Let me look back at mine. Be right back

[gwillistexas in reply to Ktltel]

Diagnosed 6/17 ALP 247. September started OCA. 10/6/17 ALP 179.

11/14/17 ALP 148. 1/4/18 ALP 132. 12/18 ALP 107. Will have lab in April. It has steadily came down. Hope it stays down.

[Ktltel in reply to gwillistexas]

So its FAST!! 😁

[gwillistexas in reply to Ktltel]

It was with me. I pray it will be for you too😊. I’ll be watching for your results 👍

[Ktltel in reply to gwillistexas]

They haven't called and the office closes in 15min. I may have to wait until tomorrow. But I definitely will post.

Thank you❤❤

[gwillistexas in reply to Ktltel]

Sounds good! I won’t be able to connect till I get home. I keep WiFi off when I’m not home. I’ll watch 😊

[liver-bird in reply to Ktltel]

Hoping and praying you get good news Stella. Big hug. Diane

[Ktltel in reply to liver-bird]

Just saw this...thank you. OCA didnt work out. I'm only on URSO now. I'm talking with my doctor about fenofibrates now.

[danaLL in reply to gwillistexas]

Hi! So wonderful. with LDN popping up again just going through some old posts. Is ocaliva still working well for you? Any fibroscans or other tests to show regression of the disease? I have had PBC for 11 years and AIH for at least 2. Just curious as I am only 44 and I am always looking for better treatment options to lead a more normal lifestyle.

[gwillistexas in reply to danaLL]

Hello! As far as I know, ocaliva is working. Alk phos was up a little but still within normal range. I actually had a fibroscan yesterday. Anxious to hear the results. I suppose that will tell the tale if it’s doing it’s job. 😁

[danaLL in reply to gwillistexas]

I am so happy for you! That is wonderful. I am sure your fibroscan will be great. I will be anxious to hear the results if you don't mind sharing.

[gwillistexas in reply to danaLL]

Thank you. If results are good I’ll post😊

[KiwiPBC in reply to Ktltel]

Thanks for your reply Stella, I really appreciate it I'm not looking for a miracle cure, just any more support available. I have read that some people starting on LDN feel they have more energy (that's what I am after!!) I see my Dr on Thursday (New Zealand time) and hope to discuss me trialling this.

Shelley

[Ktltel in reply to KiwiPBC]

Yes, I do feel more energy. I went off for awhile... a couple months. I could definitely feel the difference. I went back on it and feel better. Just more positive, up, better. Plus....so far, no return of full blown RA.

Stella❤

[KiwiPBC in reply to Ktltel]

So good to hear you feel more positive, and so good no full-blown RA returning for you! thanks so much xo

[periwinkle88]

Hi, I've been on LDN for over a year. I have PBC and Hashimoto's. I don't know if it has helped the PBC, but I remain at a very early stage without much in the way of symptoms. I started the LDN to potentially help with the thyroid issues. I've had mixed results. Instead of having to reduce my thyroid dosage (as expected), I've had to raise it, and am taking a higher dose than I ever had in the past. (I had previously been on an unusually low dose of thyroid meds, so maybe upping the meds is my body becoming normalized from the LDN.) I have to take the LDN in the morning rather than at night because it still affects my sleep with vivid dreams. I haven't been able to raise it past 1.5 mg., or the fatigue is too great. I would not say it has given me increased energy. However, I have had two major benefits. Within a week of starting the LDN, a very itchy psoriasis patch on my neck completely cleared up, and has stayed away. I experimented with stopping the LDN for a few days, and that area became itchy again. (It's the only area that I had psoriasis.) The other great benefit has been I have become less reactive to some foods that I was previously intolerant to, so my diet has expanded quite a bit. For that reason alone, I will keep taking it.

[KiwiPBC in reply to periwinkle88]

Thanks so much for your input, I do appreciate it. Yes, It seems everyone reacts differently to almost everything with PBC - there is certainly not just one thing that works for all. I have been pretty much symptom-free for 10 years, but the itch has developed with a vengeance this past two weeks, I'm hoping if I tighten up on a few things it will settle down, but it is keeping me awake at night. I would like to try the LDN to see if it makes any difference for me - we will see!

Stay well, Shelley

[Bbsmom]

Hi first post but daily lurker so hi to all.

Yes, I was put on it before Christmas 2018 initially 1 50mgs tablet a day and it has been a godsend to me, the medication blocks the receptors in the brain to stop you “feeling “ itchy and it is the first thing that has helped me, I can up the dose to 2 tablets if required but I seldom need to....questran and 300mgs rifampacin before then and my body got used to them. This new one is great and finally some sleep from the dreaded itch.

[KiwiPBC in reply to Bbsmom]

Hi thanks for your message and pleased to hear it has been a relief for you, the itch literally drives me crazy! You are on quite a high dose?! But good to know what is working for everyone

[Bbsmom in reply to KiwiPBC]

Had to go on that dose as I had literally clawed myself til I bleed, tore the skin off myself, what very little sleep I was getting I was still scratching in my sleep n woke out to scrapes and bleeding every time. Best thing I ever went on, despite the PBC being diagnosed 10 years ago I only became symptomatic in July last year, before that had very mild itch but urso kept it under control. Hope you get some relief from the itch whatever dose you try. Keep me posted.

[KiwiPBC in reply to Bbsmom]

Really good to hear everyone’s experience. I was diagnosed 10 years ago also (very very early by accident, I’m 42 now)... I’ve had pretty much no symptoms apart from some fatigue until a month ago this itch has come with a vengeance and keeping me awake, it is like torture. I am going to my dr tomorrow and will discuss LDN. Thank you so much

[Rsbrown]

I have been taking it along with several supplements. My liver function results are back to normal. It has also helped a lot with pain.

[KiwiPBC in reply to Rsbrown]

Hi, thanks so much for message, good to hear some are doing well on it! How much do you take out of interest? Thanks again

[Lizzy1313]

I've also had good results with ldn. Been on it about a year. Prior to taking it I was in a lot of pain, completely exhausted all of the time and not sleeping well. It's helped with the first two issues, but the vivid dreams made it harder to sleep sometimes. I'm taking it in the am now. Totally recommend trying it. Good luck!!

[KiwiPBC in reply to Lizzy1313]

Hi, thanks for your input, great to hear it has helped you in some ways, sleep is so important! How much do you take? Thanks in advance

[Lizzy1313 in reply to KiwiPBC]

I'm taking 3 mg in am.

[Lizzy1313 in reply to KiwiPBC]

I also recommend reading Liver Rescue by Anthony William. I've been exploring all the liver friendly/nourishing foods he suggests and have been loving them!

[KiwiPBC in reply to Lizzy1313]

I’ve been on medical medium protocols for about a year, especially the celery juice which has helped me in many ways, just not the itch!

[Lizzy1313 in reply to KiwiPBC]

The celery juice has been so hard for me to keep up with. I love the taste, but my juicer takes so long to clean! And just got a new one before I new about the celery juice. Strings are hard to remove from spouts!

[ninjagirlwebb in reply to Lizzy1313]

The Vitamix is a good splurge if you are really into veggie smoothies.

[Hidden in reply to Lizzy1313]

Lizzy, chop celery across the grain of strings, same with root ginger to avoid long strings clogging the works. It's quicker to chop than to unwind!

[Lizzy1313 in reply to Hidden]

I'll try that! Thanks. Going to try to do celery juice daily! Yay!

[KiwiPBC in reply to Lizzy1313]

sorry, I was meant to reply to your celery juice problems yesterday, but the day got away on me! Yes, celery can be a bit of work to clean from the juicers. I have had juicers for many years, usually, the cold press masticating juicers, but these are such a pain to clean with celery juice, so I actually bought a breville juicer just for my celery juicing - crazy I know! I do know celery juice is working for me on many levels, I hope you can feel its benefits soon.

[danaLL]

I’ve heard the same thing about LDN and was on it for a while. I am going to ask my hepatologist about it again. The endocrinologist that prescribed it to me years ago had told me that it was accidentally discovered to help with HIV when it was given to heroin patients to wean them off heroin. The Doctor Who is working with these patients discovered that it hauled the progression of HIV. The endocrinologist I was working with strongly believes that there’s no money in it for doctors or pharmaceutical companies so it is not pushed as a solution. I am glad to hear that it may be coming back to Light. If you get any more information please post ! Thank you