PBC Foundation
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Hormone Replacement

Hi Anyone have any experience of Hormone Replacement Therapy with their PBC, I have been prescribed it for horrendous sweats, any info greatly appreciated, my GP is aware of my PBC.

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I've been taking Premarin (estrogen) for decades after full hysterectomy at the age of 39. I started on Urso in September of 2016 (I'm 64 now). Urso had no side-effects or interactions with Premarin, all this time. However, recently I stared on a thyroid medication (about 2.5 month) and that seems to give me problems. I started having cold sweats, like I had years and years ago after the surgery. I'm trying to adjust the dosages of Premarin and the thyroid medication (Levothyroxine - oral), to work better together. For now, the problem is not resolved for me. And, I wonder if it is only the Levothyroxine and Premarin interaction or there is more to it.

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Hi, Thankyou for your reply, I too had a full hysterectomy at 36 and had been on HRT for years, then GP decided because of my age to take me off them, sweats returned with a vengeance, after many requests to get the HRT back I finally managed it, I also take 125mg of Levothyroxine, I never thought that may be causing the sweats, I'll await to see how it goes. Keep well.

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Yes, this is interesting. I also thought that at 64 I don't need to take estrogen. Not so. Without it, my cold sweats returned. I got better within days after starting taking Premarin again. But, since Levothyroxine, it's gotten really bad again. I'm playing with the dosages of Premarin and Levothyroxine now. Keep me posted, please, how you are doing, so, we can compare notes.

Good health!

Thanks.

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Urso does have horrific side effects

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So, sorry! Many take Urso w/o any side-effects. I hope you can find a medicine that won't give you bad side-effects.

Best wishes!

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Hi I don't take any meds for my PBC, and my LFT'S are always normal and see my consultant every year, I'm lucky,

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How come you don’t take any meds for pbc? Is it because the meds are not tolerated by you? Besides LFT’s, is your Alk Phos normal as well? My understanding is that normal LFTs are not an indicator for pbc progression.

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Hi There, No, I can't tolerate the Urso, consultant assures me all is well with my LFT and blood tests, and recently had a scan and all is well with my liver, so I just take them at their word and get on with my life although I do have fatigue,

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Can’t handle side effect

SunXXOO

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I’m on Estradial patch and have been on HRT since age 37 when I had a hysterectomy. I’m now 71 . I’m wondering if it has had a beneficial effect as I’m not on any drugs for my PBC as I could not tolerate Urso, and ocaliva was contraindicated. Just a question though. No one has told me anything about taking or not taking it . I also may have microvascular angina and HRT is the treatment for that. So just my thoughts. Good luck

J

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If you don't have any side-effects from what you are currently taking, then you must be OK. It looks like, we may need to take estrogen even at older age. It has benefits for better bones.

Stay well!

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Padt Specialist that wanted me to discontinue the patch (HRT), my current Liver Specialist says not to discontinue. I can’t taking Urso or Octavia too many side effects,SunXXOO

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What is your doctor’s view on the state of your pbc currently? It is amazing that you are not on any meds & you are doing well. How long have you had pbc?

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How long I’ve had PBC is the million dollar question.

I’ve had increased ALP,AST, and ALT since 2000, but no one checked for PBC until last March (2017) ,when I was sent to a hepatologist and after more blood tests (positive for AMA and ANA) and a biopsy , I was diagnosed. I’d never heard of PBC before so it was a quick learning curve. I get extreme nausea and vomiting on URSO. so it has been ruled out. My ALP is 264 , bilirubin ranges from 14- 25, my last fibroscan was 9.5. AST and ALT are only marginally raised.

My ALP is rarely higher than it is now. So is PBC a new thing or has it been there but missed. Who knows?

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Maybe Ocavalia can help you? It is best to try to keep it from progressing. Ask your doctor.

Thanks for answering.

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Yes I was referred to see if I could get funding help with Ocaliva, but manufacturers thought that I was not a good candidate. I’m waiting for my hepatologist to start a clinical study now on another drug. But I am 71 so think I may still die of something else rather than PBC. as it is very slow progression.😁😁

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Hi There, I think I may have had PBC for about 15 years now, I'm very lucky,, no itching etc, but do have the fatigue, I get all the blood tests once a year and recent scan was great, so I just get on with it,

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I use the estradiol patch. Estrogen doesn’t go through liver that way.

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That’s what I used also. My drs very words👍

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Hi Jaycee like you my menopausal sweats were horrendous. My Gp would not prescribe me HRT until my gastro consultant confirmed it was ok. After a year of trying everything possible and spending a fortune on alternative therapies including acupuncture I started HRT patches 4 months ago and am pleased to announce the sweats have stopped and I feel more like my old self. Have been diagnosed PBC since 2014 but likely only stage 1 (keep being told my liver is fine and LFTS not too bad) You could not get me off HRT now if it helps until I retire am happy x

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Hi Melmar, How long did it take till your sweats stopped, I've only been on it for about 2/3 weeks and am still getting them, I too am only stage one, don't take the Urso and all seems fine, I have a wee bit more energy now, so hopefully things will improve soon,x

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