Recently diagnosed: I was diagnosed with PBC... - PBC Foundation

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Recently diagnosed

Ronald1 profile image
15 Replies

I was diagnosed with PBC on 16th Oct 2019, although I suspect that I may have had this condition for some years. I appear to be one of the lucky ones in that there is currently no significant damage to my liver and I am responding well to medication. However, I have been advised by my surgery to make an appointment to discuss my HRT meds due to my diagnosis. I asked my liver specialist if there were any contra indicators taking both medications but she seemed unsure and referred me back to my GP. The GP is also unsure and therefore wrote to the liver specialist to ask their advice. I am now informed that there are no issues taking both medications. I am however sceptical as I note that the info sheet in my meds states that I should inform my Dr if I am taking medication containing estrogen. I am not confident in my health professionals. Has anyone else experienced similar concerns or been advised that they should not take HRT in conjunction with URSO?

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Ronald1
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15 Replies
iagra profile image
iagra

I've been on HRT (premarin) since 1993, when I had a full hysterectomy at age of 39. I still take 0.625 mg of premarin every day. Without it, I still experience cold sweats and even hot flashes. So, I don't skip and then all goes well. I also take URSO since 2016, 500 mg twice a day. I have no issues with estrogen level and my liver labs improved since I got on URSO. I also take thyroid medication, daily. All three meds work fine together, and none of my doctors (GP and GI) ever raised any concerns about it. Even though it's OK to take estrogen and URSO together, as I was advised by a pharmacist, I prefer to have at least one hour in between of taking the pills. Just for the reference, I'm in the US.

Good luck!

cazer profile image
cazer

I was told by my consultants at Queen Elizabeth.. Liver transplant unit not to take the pill or hrt.. Over the years..

I thought the hormones could affect pbc...

Think you need some more consistent advice... Are you under a liver unit??

Best wishes cazer.

ENuk profile image
ENuk

I was also advised not to take HRT with PBC however I assume the different responses are due to risk assessments.

Routinely I think they would avoid additional meds that could impact the Liver but the benefits could outweigh the risks. My GP would only prescribe HRT if my Liver specialist was aware.

Dieselwales profile image
Dieselwales

Hi Ronald1

I too take HRT, Premarin 0.625, without any problems, along with Thyroxine for under active thyroid, Fexofenadine for the itch, & Nexium for acid reflux, Calcichew for osteopenia, all with no adverse affect on my bloods.

I take my full dose of Urso ( 1000mg ) after my evening meal, & the rest in the morning .

All the best on your PBC journey.

gwillistexas profile image
gwillistexas

I was on HRT...Vivelle Dot patch after my hysterectomy in 1984. That was years before my PBC diagnosis (2017). One thing I remember my GYN saying was he would not prescribe estrogen pills because they filter through the liver. I wore the patch 12 years and weaned off because of my family history of breast cancer. Sure wish I were back on it though. Good luck!😊

GrittyReads profile image
GrittyReads in reply to gwillistexas

Hi Gwillis,

My GP gave me estradiol pessaries (Vagifem), when all other 'aid' had stopped.

I find I feel much 'perkier' and they help with all sorts of issues.

However … I don't have PBC: I just have annual checks as I'm (probably) just one of the 8% who 'just have' AMAs and never go on to develop PBC.

While not the full whammy, I find the Vagifem a great bonus.

gwillistexas profile image
gwillistexas in reply to GrittyReads

Yes, I’ve heard of vagifem. I’m 65 and haven’t had hot flashes or anything related in probably 10 years or so. I do feel that once we are without hormones it affects our skin, especially the face. Estrogen is a great thing to have for many reasons. Hope you’re doing well. 😊

Terhen profile image
Terhen

Im in Finland and was told that PBC patients are not advised to use HRT. As I understand it, urso isn't the actual contraindication, it's the liver. I started menopause early, at 43, and am now 52. The menopause symptoms are mostly behind me now, but I had some very rough years. It helped to know that the hot flushes, night sweats etc. are just symptoms of a normal hormonal change. You'll pull trough!

mrspeffer2 profile image
mrspeffer2

Morning all you lovely ladies.

From my experience and what I have been told by my Gastro and Hep. doctors, synthetic HRT is not good for us on many levels. There are associated risks and factors to consider with any replacement product. I was wrongly prescribed synthetic HRT that although they knocked the socks off my symptoms, really altered my systems balance. I had tried the patches which fell off at a whim, and the tablets which bombed my system.

I finally landed on Bio Identical compounded HRT. First the individual creams to fine tune my personal dose, now on the troche and a vaginal cream. My compounding pharmacist suggested that my doctor write a double strength dose and have me take only half dose daily. That way it's a two month supply and affordable. Since insurance doesn't cover these, the doc had no issue with it.

My LFT's are actually improving. Even with the Bio Identical HRT, doctors are bound by ethics and have to inform us of the associated risks. I had to say out loud, that I knew and understood the risks. I'm 66 now and feel really good on them. Without them, Night Sweats return, joint pain increases, muscle spasms are frequent, and any thought of intimacy goes down the toilet. With my Bio's I feel wonderful. Skin is subtle again, joints feel good, no night sweats or muscle spasms. My husband can't believe the difference...yes, there is life again in "hooville" too. Life is too short to be miserable and have all the terrible symptoms associated with menopause plus PBC. I experience a very young menopause and I was untreated and miserable from those symptoms over 20 years before a doctor said he thought it would help. Hope you find the answers right for you. Be well

gwillistexas profile image
gwillistexas in reply to mrspeffer2

I love it and you’re so funny😂.

mrspeffer2 profile image
mrspeffer2 in reply to gwillistexas

A laugh a minute...

LorraineLouise profile image
LorraineLouise

I have been bio identical HRT for over 10 years .Also Diagnosed with PBC and been an orzo since November 2016. All my specialist say it is fine for me. Hope this helps you.

LorraineLouise profile image
LorraineLouise

I have been bio identical HRT for over 10 years .Also Diagnosed with PBC and been an orzo since November 2016. All my specialist say it is fine for me. Hope this helps you.

Triciawc profile image
Triciawc

My gastroenterologist does not have a problem with me using the vivelle patch because, as I understand it, it does not filter through the liver as a pill does. Gynecologist, however is saying that next year should be my last on the patch as I’m now 65. I dread it. People pay me to be patient. I work with children. I’m not nearly as pleasant without it 🥴😩

gwillistexas profile image
gwillistexas in reply to Triciawc

That is what my GYN said as well. 😊

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