Phosphatase not dropping

Dear all,

Good morning and a happy autumn Sunday to you all!

Finally my AST/ALT is back to normal levels again! Ggt dropped to 50 (huge improvement).

Only alkaline phosphatase staying up around 200.

Any of you experiencing the same?

I was diagnosed December 2013 based on positive AMA (MK2 negative), Sicca syndrome, exhaustion). Started on Ursodiol it took one year for AST/ALT/GgT to drop to normal. Phosphatase stayed high around 200.

Specialist said that was unusual phosphates se should drop sooner and would be marker for longer transplant free survival (week).

Decided to take me off Ursodiol January 2014 to perform liver biopsy in April. By then all 4 enzymes where skyrocketing worse than before diagnoses!

Biopsy came back not conclusive for PBC.

Specialist proposed to stay off Ursodiol until end of 2015 to reevaluate.

I went to my GP after 6 weeks for liver tests which were so bad I asked to be put on Ursodiol again summer 2015.

All enzymes dropped by now (reloef) except the phosphatase.

Hardly itching, all other kinds of inflammation (all other autoimmune diseases excluded by thorough Reumatologie checkup) and extreme fatigue.

Actually despite improvement of liver tests my extreme fatigue is getting worth by the week.

Any of you experiencing something similair?

Best wishes and hang on in there. Even on the bluest day we can take joy out of the smallest things.

Thank you all for your presence and attention. Martina

[kimphoebe]

Hi to you this morning,

Same story here I was diagnosed 3years ago all enzymes were around 600 the only one not to drop to normal is the phosphate which remains around 200 seen my doc up in Birmingham and I'm classed as a nonresponder to the meds. Over the last year my fatigue has been terrible to the point I can't even go to work at the moment. Sorry can't help any further

[Hidden in reply to kimphoebe]

Der Kimphoebe, thanks for replying. I am so sorry you Arena feeling so exhausted. I had to give up my business this year because I can't manage to work anymore, I know how you feel. Just don't give up yet.

Obeticholic acid trials are almost finished and it will soon be the medication of choice for non responders.

I know the fatigue is devastating everyday and now most of the days I am able to get up in the morning, make breakfast, shower and do the daily very low level stuff (not even normal household chores anymore) and then after 2pm my life is reduced to the couch reading, writing, watching movies. Still for now make the most out of it as hard as it is. Seeing friends for coffee or any other activity means three days of rest. Still: happy moments are so important!!

I am not giving up yet and embarking into a search of many adjuvant strategies to make my life at least a pleasurable once in a while.

Pushing through medical stuff with my specialists to look into other reasons for elevated phosphatase, get proper diagnostics, isolating me from people who take energy, concentrate on people who are willing to go the extra mile together with me, heck I am even moving to another place soon where I have organized a total retreat for myself for a couple of months in the countryside and a house with no stairs (life in the big city apartment has robbed me of every bit of joie de vivre the last three years.

I adapt, dig, feel, choose what my body and mind needs as good as I can. If you like I keep you updated about my doctors results and life changes and how the influenced my life. It's a challenging adventure. Some days easier than others but still a challenge! Let's fight!

[Donna2641 in reply to kimphoebe]

How long on the Urso before they went to normal

[NotorDJP]

My Alk Phos isn't normal either, but it dropped from 500 to about 170, which my Doctor was very pleased with. He said if it stays there he will be happy. .So not sure why your doctor said you are a non responder? If yours dropped that far, I think you were responding. I'm not sure any of us ever get to total normal on the Alk Phos, as our livers have some level of damage by the time we are diagnosed. My ALT/AST are normal though too.

I am considered stage 2, at biopsy, but that was last year. I am now currently anemic, so I am going to have my bowels and stomach tested in December. Hope you improve.

[NotorDJP in reply to NotorDJP]

PS, my levels dropped in a matter of months

[Hidden in reply to NotorDJP]

Dear NotorDJP,

Thank you for sharing. Happy your levels improved! Regarding your anemia why will The test bowels and stomach and what tests will they run, what is the link (pardon asking me). My phosphatase was around 200 when starting Ursodiol late 2013 and just stayed the same. Around that level. I was rechecked recently at the reunatology wing of the academic hospital since I have all kind of other inflammation bouts from eyes, bladder, skin, very painful aphthous ulceration a on tongue, mouth, elsewhere so again they wanted to exclude other autoimmune diseases. All came back negative from scleroderma to vasculitis.

I have total sun intolerance now with face swelling up and reddish like in lupus. They think it is all liver related because they can't find anything else wrong. E'll wait and see.

My biopsy was inconclusive liver pretty good. Fibroscan too, very puzzled because getting sicker every week. Including yellow stool and baits of nausea!

Oddest thing. They now differentiate the phosphatase further to see from which tissue the elevation stems then planned me for a MRCP to rediagnose the PBC (which I don't understand). And think of eventually putting me on plaquenil for the other symptoms together with ursodiol.

6 hospital stays in 2 years I honestly had it so I rented a beautiful cottage in a rural area where I will get to my senses again in the company of my beautiful border collie. Stepping out of it, regroup evaluate and be

[NotorDJP in reply to Hidden]

Hello! One of the first things they check when you have iron deficient anemia (which they think I have) is to see if your bleeding anywhere. The two major culprits are the bowels and the stomach. I had a fecal smear test positive once last year for blood. It was a very faint positive, but it was positive. I have an anal fissure that was flaring then, so I think it was that, but my doctor wants to make sure. They are testing for cancer more than anything, or for bleeding polyps or maybe an ulcer. PBC also causes esophageal varices, in later stages, which would also mean my PBC is more advanced than they originally thought. Or it could just be my super heavy periods causing it. I've been a little anemic for nearly 6 years. I would think if it was cancer of the bowel I would be dead by now. Ha!

They usually do an MRCP to see if you may have PSC. Its another disease like PBC but it affects the large bile ducts instead of the small like PBC. Do you have Crohns or any bowel issues? That is indicative of PSC too. Have they tested your pancreas too? You can have yellow stool if you are getting pancreatitis. With all your other inflammation issues I could see that. I have some facial inflammation and some sun intolerance, but nothing major. My major symptoms are joint pain, pain on the right side that sometimes wraps to the back, and fatigue.

I don't itch either, nor do I have high bilirubin or low albumin. My levels are pretty stable.

Sounds like you have had a pretty thorough looking over, and I'm sorry you don't have more answers. I was told by my rheumatologist that I wasn't likely for Lupus, as my ANA went from positive to negative. He said that is common with PBC. Let me know if you have any other questions.

[Hidden in reply to NotorDJP]

Dear NotorDJP thank you very much for your thorough and very detailed resonse, it was very helpful to me. Yes unfortunatley I have been in three hospitals so far and all of them put a bit of the puzzle together. And slowly I am getting there. Yes my Ana's were psitive a couple of times as well as my ENA's slightly but then they dropped again. My situation sounds very comparable with yours. No bowel disease here, however two years on a row already polyps of which some serrated adenomas including one with focal high dysplasia, so having to go for an endoscopie every year. I will keep you posted aout my MRCP I am very curious about that now! Thanks again for sharing!

[Vivaldii in reply to Hidden]

Rural property and peace and beauty sounds like a great choice I live by Lake Erie and trees etc and it soothes my soul Today I am starting a meditation practice to help me with the emotional and physical pain Good luck Sending you love and healing x

[PBCFoundation PBC Foundation]

Hello Martinap,

I am just about to respond directly to you.

Best wishes

PBC Foundation

[Hidden in reply to PBCFoundation]

I have registered now PBC foundation I thought I was a member already since diagnosed but ow only through your posting understood how it works. I will send you messages soon. These days so busy with follow up tests. Thanks for your message. best wishes, Martina

[PBCFoundation PBC Foundation in reply to Hidden]

Not a problem Martina.

Glad to be of help. Please don't hesitate to contact us if you require any further information.

Regards

PBC Foundation

[Shiloh119]

I was diagnosed in Jan of this year and was started on Urso straight away. All was well until the summer when the fatigue and joint pain gripped me like nothing I'd ever known before. My GP ran more bloods and my alkaline phosphatese had spiked dramatically. He liaised with my gastro and the conclusion was that it was the pbc. I am thinking that I may be a non responder to the Urso as I am pretty sure that the meds should bring the alp level down. (I may be assuming wrong). I am due to see my gastro for a routine appt in Jan and so I await my consultation with him for more information as I'm not sure that my GP knows a great deal about this disease.

[gowergirlie]

Do you think it could be scleroderma? The reason I ask is that usually it's confirmed by having a capillaroscopy. Blood tests just show if you have the marker. I swapped my Ppi's from omeprazole to esomeprazole and that seemed to help with my levels a bit

[Hidden in reply to gowergirlie]

Thanks Gowergirlie for your tip! Yes, two reumatologists looked at me for scleroderma and they didn't want to do a capillaroscopy (having slight Raynaud syndrom and and infections under my fingernails regularely. It's all about protocol here, no antibodies, skin testing at a determined number of pints negative: no further testing. I just accept it as overlap syndrome not much more i can do about it for now. Sit through the variation of infections. Eat healthy, diminish stress in daily life and wait that all liver enzymes are in a good range. Isn't it odd the different rules and protocols in the different countries? We all do have the same disease and if they would streamline the approach even research would get much, much easier as well as treatmet outcome

[Donna2641]

How high were your alt and ast? Before Urso?

[Hidden in reply to Donna2641]

Dear Donna,

Thank you very much for your reply. My Alat/Asat was above 200 in 2013 now back to normal

My ggt above 100 now 50

My phosphatase stayed steady around 200 all this time. Biopsy was inconclusive. But I am a dependent to Ursodiol. I was tested negative for AIH and back then my Ana's were slightly positive my Ama ones positive yet Ama MK2 negative before on Ursodiol. Ever since on Ursodiol negative serology. Hospital now wants to make a MRCP and rerun serology still suspecting AIH and differentiate phosphates. Interesting times! Best wishes, Martina

[Donna2641 in reply to Hidden]

Hi Martinap,

What about SMA? Smooth muscle antibody? I am going thru same thing. They suspect PBC/AIH overlap. I just went on Ursodiol a week ago and when I had my blood work done it had been 5 days and all my numbers dropped. My GGT is elevated as well as positive smooth muscle and Ana negative, AMA positive.

[Hidden]

I had negative smooth anti body. Took for almost a year for my values to drop. Then the gastroenterologist stopped the Urso to do a biopsy. 4 months later biopsy was inconclusive with minor shunts and small inflammation and not typically PBC. They suspected medication intoxication or something similar while I don't drink smoke or use substances or meds. My liver values where so incredibly bad by then worse than 2013 they finally put me on Ursodiol again. Now 6 month later values dropped again. As Ursodiol only works with PBC and all other symptoms match aka fatigue doc ca syndrome etc they now believe it's PBC and want to rerun all the tests. Wow working within 5 days that's fast! Do they give you anything for the AIH or only Ursodiol for the PBC? Best wishes, Martina

[Donna2641]

I need biopsy and they r going to see what that says but if comes back AIH positive I would b put on prednisone and Imuran. 😔