Hi my friends, I wanted to share some good results I’ve had - and not just encouraging for me I hope, because I think this shows once more that it’s possible to remain stable for decades. I’ve just had my fibroscan and shear wave elastography results, and they’re still in normal range 17 years after I was found to be AMA positive. In fact, my LFTs are often in normal range too (they fluctuate a bit) although I always have the classic PBC profile of raised GGT and IgM.
I’m fortunate to be an Urso responder but I do also take very low dose prednisolone (for another AI disease) and I’ve wondered if that helps. There’s no evidence that it does in the in the literature though, I should add.
I’m aware that not all of us have slow progression, and I feel for everyone wherever they are in their journey. xx
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Skypony
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I'm doing OK. I'm just on URSO again. Ocaliva didn't have the desired effect. I'm having labs next Friday since I've stopped taking it. Then I think I'm gonna talk to my doctors about Seladelpar and see if I can get in on something else. All in all I'm doing OK though. Thanks.
Good to hear you’re generally ok Stella despite disappointment with Ocaliva. You’re super at advocating for yourself! Let us know your latest labs when you have them. X
Very happy for you! What’s your secret lol any tips?
I was diagnosed last August stage 1/2. It’s been very heartbreaking but trying to find acceptance. I am on some of the Facebook PBC groups and it seems like there Are a lot of “worst case scenarios” on there. Its hard to know how the journey is going to end up, I guess everyone’s different.
Thank you Irisw. Wish I knew, but I think it’s just luck of the draw with our autoimmune profiles. I exercise a bit and eat healthily but don’t avoid dairy or wheat etc.
May I ask, do you think you’d be better off not reading the scenarios on FB? While you’re adjusting (and well done to you!) maybe this wonderfully supportive forum can meet your needs best.
Hi Jenny, thank you. The scan operator said my liver appears normal ‘macroscopically’, and he wouldn’t have known I had PBC. I assume it would show microscopically, but I’ve never had a biopsy. Don’t know my CAP score - maybe it’s not routinely done in UK but probably my initial ultrasound would have shown that up.
Thank you Skypony. It's good to read this. I'm pleased for you. Have you had both TE and 2d SWE together before? I have only had TE (fibroscan). Do you know if it's possible that you had both tests to firm up the evidence that shearwave is more reliable? In any case, it's good news for you, and as you say, for us all. Thank you for this.
Also, may I ask, is the prednisolone for vasculitis? And do you have any side effects from your low dose?
Hi, thank you. At the centre I go to they routinely use both methods in same visit with same operator and consider results together. I gather they feel SWE is less prone to error and they are trialling it in some way. I saw a captured image and it was quite detailed! I’ll add my scores for the 2 methods later.
Fibroscan (TE) 4.4 kPa, Shear Wave Elastography 4.5kPa in May 2017
Fibr. 4.0 kPa, SWE 5.4 kPa in May 2019
I was told small variations between 4-5 kPa are not significant as they can be artefacts of the imaging and anything below 6 is normal.
In case anyone’s interested, bloods in Dec 2018 and March 2019 were:
ALP 89 & 78, Serum bilirubin 8 & 7, ALT 23 & 29, Albumin 41 & 38. I’ll have more from this month soon. They’re testing me frequently because I’ve started a migraine medication that can affect the liver. Strangely even my GGT’s been a bit lower recently, but probably just a blip. Or my PBC’s going away — just joking! I asked for an AMA titre rest, which they reluctantly agreed to (“it won’t affect your treatment”) I know, but got to have some fun right?
BONE PROFILE = Serum calcium 2.46 Serum adjusted calcium conc 2.5, Serum inorganic phosphate 1.11 Vit D combined 2 and 3, (acceptable) at 89.
Platelet count 118 (but improving on last test and fluctuates greatly over time anyway)
cholesterol serum non HDL 3.2
I haven't got a good grip (a clue) of how these compare with base line: I wasn't willing to think about any of it at the time. I don't regret that but now, when it wouldn't worry me, I would like to know not least because it's fascinating.
I don’t understand bone profiles but the other stuff looks pretty good! I think the thoughtful way you manage your health must be helping you stay as well as you can.
Brilliant news, Maybe there’s something in the low dose prednisolone, steroid therapy has been around for a long time. Some reasearch reports albeit a little response to steroids, as far back as 1992 and possibly before that. . In 2009 it was suggested that this therapy needed more trials and the last one I read was in 2014..Where they treated pure PBC in the same way as the PBC/AIH overlap with UDCA and had seen some improvements in blood markers . Attached the paper for anyone who likes to read. ncbi.nlm.nih.gov/pmc/articl...
Yes, pred was prescribed for vasculitis and acute tissue/joint inflammation years ago. Been taking 2.5mg for last 10 yrs - may not even be a therapeutic dose! I have mild osteoporosis but I’ve been told this small dose is unlikely to worsen it.
...this just keeps sounding better... I have mild osteoporosis but v strong family history of it. I deferred treatment for a year to see if diet/exercise alone improves bone density. And I have had decades of chronic sinus infection for which I may now have surgical reconstruction or clearance. At diagnosis of PBC, GI consultant said pred was a possible line of therapy alongside URSO. I see that you take just half of the smallest prescribed dose. It is so good to hear that it is working really well for you. As mentioned earlier, people don't often report being ok with it. Nice work!
Oh the first contact I had with anyone after diagnosis was with Collette on the phone. She was so comforting, I’ll never forget the difference she made to me. Yes she’s magic!
Based on my markers yes but several AI markers pop in and out. Currently lupus yes..six months ago it was Sjogrens...now that has gone negative. Before that it was rheumatoid Arthritis but that’s gone negative.
Thank you Candy12, and thanks for the link, I will read this. The question for me is whether pred has failed to make the cut as a treatment for established disease, but may still have a protective effect in early stage? My experience is anecdotal of course and of no value scientifically.
Have a read I think you’ll find it interesting, the trial was in early disease. I’am doing okay, but still waiting for some further test results MRI, DEXA and bloods. I was F0/F1 on my last sheerwave 2 years ago so hoping all is stable. But I may be looking at a second line therapy if the bloods have not gone back down. So fingers crossed it was just a blip...
What an interesting paper Candy12, well spotted. Pity that pred and azathioprine were BOTH used in combo with urso in the trial as it's harder to tease out what's doing what. I wonder if anything has been done to follow up? Maybe we can ask PBCF.
My understanding is that azathioprine facilitated the pred megadose to rapid tapering. Maybe? It would be good to know if others are having good results as you are on long-term low dose pred. I guess Robert will be super busy going live on App development at the mo, but I'm sure he'll be well placed to update us on this. You've caused a stir Skypony, so he'll be on it in a good way soon anyway!
Did get my fibroscan done. I am very happy because the doctor told me that my liver had no scars. But dont ask me what was my score or if it was a SWE or TE type of scan since the doctor wasn't very explicit. Also he didn't have all the blood test results so I was a bit disappointed with the fact that I will have to wait until July to meet with him again and have all my results 😒.
Hi, that’s fantastic to hear! Thanks for letting us know. If you want blood results before next appt you can usually get them by contacting the dr’s secretary and asking for them to be sent direct to you or via GP, if they won’t. Hope they’re good too. Best wishes
This is great news! I hope many of us on here can follow in your footsteps. It's interesting that you mentioned the pred. I don't have any other AI diseases (that I know of) or at least any that are being treated. However, I suffer with sinus pressure and infections and occasionally take a methylprednisolone dose pack which always makes me feel wonderful. So many people complain of side effects, etc. and prefer not to ever take steroids but I seem to respond so well to it. It just makes me wonder if there is a link to it helping with PBC. I literally have more energy and all my joints feel great when I take it and I have no bad side effects🤷🏻♀️ However, I've never taken it long term. Thanks again for sharing your good news. Very happy for you!💕😊
You’re very kind HealthyChik, thank you. Yes, steroids can bring a sense of euphoria as well as damping down inflammation! But you’re right to use pred sparingly. What do you think triggers your sinus problem?
Any and everything can trigger a sinus flare up for me. Usually it's seasonal allergies that aggravate me the most, but a simple change in temperature can also do it. I can manage the allergies, but my biggest problem is that I have a deviated septum and some other structural problems caused from chronic sinusitis. I've had years on and off without symptoms, then it seems to rear it's ugly head again. I need to have some surgery to clean it all out.. so to speak, but can't bring myself to pull the trigger. I'm feeling pretty good right now since the weather is warming up. Thanks for asking.
I sympathise. Used to have this chronically but now happens less often. I remember trying some strange upside-down positioning to get medication into sinus - don’t know if it worked but must have looked hilarious!
worse than bending over the wash basin and pouring salt water up your nose until it runs out the other side? I was nervous to try it at first, but saw a video on, I think, Mayo Clinic site. That gave me courage. It gave relief and is refreshing!
Lol...that's awful but it works😂 I use something called a Neilmed sinus rinse bottle. It's a squirt bottle that seems to be less messy, if that's possible. I like it better than the NetiPot if you've ever tried that. The things we do to get relief!😁
exactly, the things we do! It's worth thinking when/if we feel less than able, that we probably don't know a 'fit' person who could do all we do just to get out the door to start our day! I may progress to squirting but I'll stay with pouring for a while. Thanks for the thought though!
How strange,your sinus problems are sounding very familiar, I’ve tried all the above I now get steriod drops, ( yes you hang upside,down or head over the edge of the bed) I can’t remember the name but use them at least once a year.
Thank you for sharing this with us. It is great to know that urso is doing its job. I hope things remain status quo for you far into the future as well.
Elastograpy is done the same as an ultrasound, a little gel and the wand/probe over the liver area. Nothing invasive. It uses sound waves to measure the elasticity of the liver.
Yes, fatigue is my main symptom. I do quite well early in the day but grind to a halt by late afternoon. I've asked my hep what's the mechanism by which AMAs (presumably) affect our energy levels, but I don't think they know. How are you with fatigue?
I am asymptomatic (knock on wood) & was wondering when did you develop the fatigue?
I am ~5 years post pbc diagnosis, but I suspect I had pbc way before then because of my fluctuating LFT’s which were dismissed as fatty liver or caused by the statins. After switching primary care doctors, I was sent to the hepatologist & was diagnosed via biopsy.
I had fatigue for upwards of 5 years before diagnosis, not for lack of seeing the doctor and having tests all N.A.D. I retired early because of it. So I have now had fatigue for about 12 years. I can't say if it's worse now because one adapts, finds coping-mechanisms, and this against what ageing without disease would cause anyway. Amazing you have no symptoms. May that always be so! Do you have thyroid meds? I have a friend on these and she seems never short of energy, whereas I rarely agree to do anything social after 3 pm because it can cost the next day or two's energy.
I have thyroid antibodies which were discovered during routine bloodwork. This led to a sonogram & they found a multi granular goiter. My TSH was normal until recently. It became hyper, then hypo. My endocrinologist treated it & it went back to normal after a few months. I am no longer on meds.
I get tired but it is probably the same that most people experience because we all do so much.
My tiredness is metabolic - there is just no release of stored energy/glycogen. I'm only ordinarily tired at 9pm bedtime anymore! I wish there was a chemical fix with no adverse effects for this because it seems like much of my life is wasted in increasingly isolated lethargy. And I look healthy. The signs are there for those who know, including muscle wasting of upper arms and trapezius. Very strange.
what a relief about your thyroid? we know people here who are tipped all over the place with these fluctuations and need to re-calibrate doses. My grandmother had a goiter. She was told always to use iodised salt and had her whole family use it for generations. It was probably the only treatment in 1920s, but it seemed sufficient for her, living to her upper 90's like my mum and so many of their generations.
I wouldn’t have known TSH was off except my hepatologist ran labs on it as part of my blood work. I didn’t feel anything. So when he saw the labs, he told me to follow up with the endocrinologist.
The endocrinologist told me that I would probably be on meds 1-2 years & when it stabilizes she would stop meds. That was the usual experience for most patients.
I have both anti bodies that cause Graves & Hashimoto’s. My primary care doctor told me it was very strange for me to have both. Personally I think that is why it rebalanced itself after treatment quickly.
Endo says TSH is only a spectrum with Graves on one end & Hashimoto’s on the other.
Anyway I told Endo, I am not worrying about this. You can manage this for me. She is an excellent doctor. Another doctor that responds to me either same day or the next day.
Hepatologist told me not to worry, that thyroid issues are very common in pbc patients.
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Result of fibroscan
fibroscan results perplexing
Fibroscan Results with PBC
