Feeling irritated!!!

[Flower-powr]

Hi all. I went to see my rheumatologist recently due to raised ANA's on a routine blood test. Also raised M2. She feels it's nothing from a rheumatology point of view. I asked about my liver and she said as my LFT's are normal all should be fine. Lots of people could have raised ANA and not know!!!! Check my LFT's regularly and stay fit. Feel a bit irritated as I have muscle pains, achy joints, and very sore hands sometimes. She really had no answer for that. Just do yoga, swimming etc. My shoulders really hurt too. As it's predominantly left sided she feels it's muscle that are weak. Not so sure! Any ideas guys as don't want to sound like a hypochondriac!!'n

[Hidden]

Are you on any meds that might give you muscle pain? Statins might do that. You can read about the possible side effects of any meds. In US, they provide that info to you along with your meds.

[Flower-powr in reply to Hidden]

Hi I'm on lexapro but my dose is reduced from2g to 5 mg and still I feel the same.

[Hidden in reply to Flower-powr]

Is there another doctor that you have rapport with that you can discuss this with? Maybe they can help as they are sympathetic vs your rheumatologist.

[Shulsey]

Have you had your vitamin D checked? A lot of us PBC'ers end up with very low vitamin D which can cause aches & pains that are truly debilitating. I wad placed on 50,000 units weekly which helped a bit. But in also being looked at for fibromyalgia😒.

Stay strong❣️

Shannon

[GrittyReads]

Hi,

I sent you a long reply when you posted on here about 4 months ago. Most of what I said then still stands.. I think you should see a liver specialist - preferably one who is a PBC consultant - rather than the rheumy (though I know this is what seems to happen in the US - I'm assuming that is where you are) .

I also think it would be good if you talked to the UK-based 'PBC Foundation' who host this site. There is a link to their website at the top of this page, with details for phone and email links, to talk to their trained advisors. There is also loads of info on their website, plus, if you join (it's free), you get more access.

They also recently produced an 8-page document, which is their 'layperson' summary of a recent 'formal/official' document, which was agreed across the official bodies of UK/Eu/US medics. This document outlines the actions that are to be followed by any Medic when dealing with suspected PBC. The official document lays down exactly the steps to be followed for the correct 'formal' diagnosis of PBC. Have a look at the 'PBC F' site, talk to the advisors, get hold of a copy of this document, and if it still seems that your case has not been dealt with give a copy to your rheumy, but do try to see a PBC specialist.

However, just having AMAs, even AMA - M2, alone ,, does not mean you have PBC. (AMA means antimitochodrial antibodies: it is these that are believed to attack the liver in PBC, however, there are different types of AMA, and PBC is largely caused by the sub-type AMA-M2 (other autoimmune conditions are caused by other sub-types (eg AMA - M- 1 / 2 / 3/ ... etc. For a formal diagnosis you need AMAs, and/or abnormal liver functions tests, and/ or a liver biopsy. It may be that you need to insist on a liver biopsy.

Even 'just' having AMA-M2, even at a high level, does not mean you have PBC, but you may develop it. You should have your liver functions tests checked every year, but a PBC specialist is the best person for reading these results, as they may notice minor changes in the other less significant chemicals. I've had AMAs, since 1992, possibly all my life, but I still don't have PBC.

However, you mention ANAs. I know less about these, so you need to talk to someone, eg the 'PBC Foundation' advisors about them. I think they are linked to another liver condition. I think your consultant should have been doing more to test you for all other possible liver conditions, all other conditions cause by AMA subtypes (even if you have - M2), and all other autoimmiune conditions.

I hope this helps, no one here will have all the answers, sadly, but please talk to the 'PBC F' (or there is a US PBC organisation who may help), get a copy of this official guideline for diagnosing PBC, from the 'PBC F' and give it to your Rheumy, and try to see a liver specialist.

Sorry I cannot say more.

[jane1964]

It was a rheumatologist who discovered my AMA at the time liver function tests were all normal but they refered me to a hepatologist and later I was diagnosed with pbc.If your rheumatologist won't refer you I would ask your general practitioner to

Jane

[Flower-powr]

Hi all. Thank you all for your great advice. Yes I think a hepatologist is the way to go. I'm in Ireland but my GP felt it was a one off test result and may mean nothing but referred me to rheumatologist to rule out lupus. I'll request a hepatologist review next. Fingers crossed it's nothing. I'll keep ye posted. Thank you all again for you help.

[Hidden in reply to Flower-powr]

My primary doctor who is also a gastroenterologist recommended my Hepatologist to me. You will be fine once you find a sympathetic & knowledgeable specialist to take care of you.

[gwillistexas in reply to Hidden]

My primary Dr is an Internist. Sweet, compassionate. But I’m slightly pissed at the GI he so highly recommended & referred me to. I called his office a week ago this past Thursday to ask about my monthly lab ( which is due). Nurse called last Monday & said she would fax lab request to my Internist that day. ( I chose to let Internist do my labs). I still do not have my labs. Not sure which way I’m going to go. I plan to have a nice chat with Internist this next week. 🤔😬

[Hidden in reply to gwillistexas]

Why does the internist need GI lab request to do the blood work? Can't he just order what they did the prior month?

My GI is also an internist. I have my Hepatologist do all the necessary blood labs. Then I just bring copies of the it to the other doctors that might need them. I don't want them to keep taking my blood every time I see a different doctor.

When I saw my Primary doctor for my annual physical, he didn't need any blood work.

[gwillistexas in reply to Hidden]

You’re right. My GI is the one monitoring enzymes monthly on Ocalvia. He is in a huge hospital group. He asked if I thought less expensive for Internist to do my labs. I said yes. Plus, my Internist posts everything on my patient portal. I also have “my chart” with GI. Sorry to say, they post no labs. So I know with my Internist I see it all & he faxes results to GI.

[Hidden in reply to gwillistexas]

Both my Hepatologist & GI/internist have patient portals. They post the visits & labs on there. It is very convenient. I especially love the fact that I can send secured messages to my doctors. They are really good about answering me too, usually same day & sometimes as fast as within 30 minutes.

[gwillistexas in reply to Hidden]

That’s what “ my chart” is, patient portal. All visits & appointments are on there but not my fibroscan results nor my lab last month. No big deal on fibroscan, they finally called me 2 weeks after the fact. Took GI a week to read it. I’m just disgusted. I know the lab is hepatic panel & vit d. I plan to ask my Internist to go ahead with it. He will.

[Hidden in reply to gwillistexas]

Yes...that's a good plan! Just have internist run the same labs as prior month. If you don't like your GI, ask your Internist to suggest another one.

[gwillistexas in reply to Hidden]

I’m thinking I will. My GI is in the liver clinic & is very knowledgeable but I can’t tolerate this waiting game. Will see what happens.

[Hidden in reply to gwillistexas]

There must be other GI's in the liver clinic that you may like better.

[gwillistexas in reply to Hidden]

I think there are 4 & one of those is lady hepatologist. Don’t know if it would go over too well to try to see her. I need to see what Internist has to say.

[Hidden in reply to gwillistexas]

Why not? Some people prefer a female doctor. I read that on average female doctors are more effective because they are better at listening.Having said that I happen to have 2 female doctors.

[gwillistexas in reply to Hidden]

I think it would be great. And besides, understands a woman better than woman, lol! I just meant since my dr works closely with her, it might not go over too well. You see, he got perturbed with me when the big scare came out about Ocalvia. I read it on this site & called his office immediately on Monday morn. I was scared & wanted him to tell me my dose was ok. I finally , after no yay or nay in almost 2 weeks, called Intercept Pharmaceuticals & talked to a pharmacist. Expressed my concerns & she asked if I had talked with my dr. I told her I had tried for 2 weeks. She said she had to make a note of it along with his name. She said he has to monitor you closely. So, here we go...she had her med team call him😣. He called me himself & I was almost in tears when he finished. I gathered they slapped his hand. From there I saw his nurse practitioner & she was great. I agreed to see her from now on. Said she would monitor closely for few months. So here we go again trying to get labs. My Internist nurses return calls quickly & labs are scheduled promptly. Mess.

[Hidden in reply to gwillistexas]

Geesh...sounds like a land mine. I don't know what to tell you. If the nurse practitioner can monitor you closely, as opposed to the GI. I am wondering why the internist can't do the same. I am sorry you are going through this. I am type A personality so I am not a patient person, so I understand how you feel.

[gwillistexas in reply to Hidden]

Ha! Type A here🤨 that’s ok, we get it done, lol!

[dianekjs]

Flower-powr , do you know what your ANA titer was? If the test was run by the IFA method (most accurate), the result would be expressed as a titer, such as 1:160, 1:320, etc. A low positive titer like 1:40 or 1:80 is in fact fairly common in the general population and may or may not be significant. Do you by any chance have Raynaud's Phenomenon? Muscle and joint pain or tenderness in rheumatological diseases does typically tend to be symmetrical rather than one-sided. Are both hands sore? What about your fingers, are they puffy or swollen?