AutoImmune specialitst for Lupus induced AIH / Auto Immune Hepatitis

[DonnaDwyer]

Hi I have had a number of things going wrong with my body lately and thought that they were all separate issues, but I am convinced, I may be headed for Liver failure, so I need to see someone who really knows their stuff.  This condition is quite rare, so I need someone with experience to fully diagnose me so I can hopefully take steps to put it into remission and buy myself some more time.. ????  I do not know if I need a Rheumatologist, Gastroenterologist, or Auto Immune specialist.     

Not ready to go just yet.  Thanks for your help

[Sheryl]

If you have been diagnosed with lupus (as opposed to a self diagnosis, these are usually wrong) then you need to see a rheumatologist, these also treat autoimmune diseases like lupus and its complications. If they see a need for other specialist they will refer you.

 

In Bangkok, any of these doctors

 

https://www.bumrungrad.com/en/doctors/Hiroshi-Chantaphakul

https://www.medparkhospital.com/en-US/doctors/assoc-prof-dr-hiroshi-chantaphakul

(same doctor, different hospital; Medpark will be less expensive than Bumrungrad)

 

https://www.bumrungrad.com/en/doctors/Porawat-Makornwattana

 

https://www.bumrungrad.com/en/doctors/Monthida-Fangtham

 

https://www.bumrungrad.com/en/doctors/Paranee-Auethavekiat

 

On what basis do you think you are headed for liver failure? I ask as most people who say this are far wrong and, often, have misinterpreted /over-reacted to liver enzyme results. If you were really near liver failure you'd likely be in an ICU now.

 

What medications are you on for your lupus?

 

 

[DonnaDwyer]

Hi Sheryl, I was diagnosed with Lupus 23 yrs ago and then received a partial diagnoses for AIH about 15 yrs ago.  
I say partial, as the next step in my diagnosis to discover what type of AIH was to get a biopsy of my liver.  At that time i was pretty much in denial as I had no pain and had read that those that got a biopsy were left in terrible unrelenting pain, so I skipped that step resulting in my Canadian doctor refusing to help me with meds, or followup etc.

So I am not on any meds.  But in the last 2 years many things have been going wrong with my health and I thought they were all separate issues, still being in denial about my condition.

Recently I have been in terrible pain and having difficulty breathing, I have seen about 5 doctors and being diagnosed with everything from a pulled shoulder muscle with physio followup, to gerd with medication.  

Saw a cardio surgeon, and she said all was well, saw a lung specialist who wanted to do an MRI w contrast, but I wanted to have the tests that say my kidneys are working properly before I have the MRI w contrast as it can damage your kidneys.

I was about to see a urologist but was suddenly hit again with the terrible upper chest and back pain radiating to my shoulders and upper arms with a fair bit of difficulty breathing, not being able to walk far except some small tasks about the home.

After another night of not sleeping due to terrible upper body pain, and having difficulty breathing,  I did more research, suddenly thinking all these ailments were connected and that it was most likely the AIH, liver hep that was coming back with a vengeance. And it does seem that AIH in latere stages can cause blood circulation problems as well as difficulty breathing.

The doctor I saw at the Bangkok Hospital for my venous insufficiency did not ask any questions, and gave me a prescription to fix that problem, and I was elated, as my son had asked about side effects and the doctor said he had not heard of any side effects.

When i got home, I looked up 'Daflon' and it mentions that people with kidney or liver disease should not take this drug as it can lead to liver failure.

So a couple of thousand Baht later, I have a drug I cannot take.  I am hoping I can return it as it has not been opened and is still in the bag it came in.

I am scared and in constant pain, I hope I can see one of the doctors you recommended today.. but I am terrified of being hospitalized, as I have experienced some bad things at the hands of medical staff in my home country.

If they say I am dying then I will let them hospitalized me, but I would rather hire a nurse to come to my home to care for me.

I have stayed relatively healthy not smoking or drinking, for most of my life, and I am very careful with my diet, eating only clean, organic, grazing products and have mostly kept up an active life with exercise. But that all seems to be in the past now.

Thank you Sheryl, for all your advice and help.  I avoid all pain meds as most cause more harm to the liver. ???? God bless you for all you do here.

 

[Sheryl]

Certainly you should see one of the listed rheumatologists at once. Lupus is a complex disease which can cause many different symptoms and affect many different  organs.

 

A liver biopsy does NOT cause lasting pain. Some people who have had  liver biopsies done may have pain thereafter but it would not be due to the biopsy. Suggest you lay off the internet, see one of the excellent rheumatologists listed and follow their advice in full. 

[DonnaDwyer]

Thank you, I have followed up and went to the MedPark hospital.  The specialist you mentioned could not see me there until Oct 12 or so, but it turns out there is an amazing lady doctor (Dr Sudumpai Jarukitsopa) speaking perfect English and is the first doctor I have met in Thailand in one year, who asked me many, many, questions and took lots of notes and seems to really know her stuff w over 20 yrs experience as a Rheumatologist. She also gave me pretty well a full physical as well. 

Even the front desk answering system people speak as if English could be their first language and at least 3 nurses talked to me in good English. 

I have had xrays, urinalysis, and 5 vile's of blood work and should get the results back in a week with another scheduled appointment to go over the findings.  While in her office I suddenly went into remission having no pain, and here it is a day later and I can breath effortlessly, and all my body pain is gone!!?? ???? I have only been eating veggies with a little liver from a grazing animal, some nuts, soups to start, avoiding all sugars and prepackaged foods and treats, as well as going for a half hour walk for starters.. as I do not want the symptoms I was having to come back.  Thank you so much, I have been to Sukhumvit, Bangkok, Camilian hospitals, all good hospitals, but, this is the first time I am truly impressed with the quality of care and genuine interest from a doctor and fantastic support staff.

Again, thank you Sheryl, thank you thank you. . . ???? xo

[Sheryl]

6 hours ago, DonnaDwyer said:

Thank you, I have followed up and went to the MedPark hospital.  The specialist you mentioned could not see me there until Oct 12 or so, but it turns out there is an amazing lady doctor (Dr Sudumpai Jarukitsopa) speaking perfect English and is the first doctor I have met in Thailand in one year, who asked me many, many, questions and took lots of notes and seems to really know her stuff w over 20 yrs experience as a Rheumatologist. She also gave me pretty well a full physical as well. 

Even the front desk answering system people speak as if English could be their first language and at least 3 nurses talked to me in good English. 

I have had xrays, urinalysis, and 5 vile's of blood work and should get the results back in a week with another scheduled appointment to go over the findings.  While in her office I suddenly went into remission having no pain, and here it is a day later and I can breath effortlessly, and all my body pain is gone!!?? ???? I have only been eating veggies with a little liver from a grazing animal, some nuts, soups to start, avoiding all sugars and prepackaged foods and treats, as well as going for a half hour walk for starters.. as I do not want the symptoms I was having to come back.  Thank you so much, I have been to Sukhumvit, Bangkok, Camilian hospitals, all good hospitals, but, this is the first time I am truly impressed with the quality of care and genuine interest from a doctor and fantastic support staff.

Again, thank you Sheryl, thank you thank you. . . ???? xo

Glad it worked out and thanks for the feedback on this doctor.

 

Spontaneous flare ups and remissions are common with lupus. Anyway wait to see what the tests show.