overlap additional AI conditions? - PBC Foundation

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overlap additional AI conditions?

CeeCee101 profile image
22 Replies

I am still trying to figure out if I have another overlapping condition, had a problem with a terrible rheumatologist on first appointment with him but did get a boat load of blood work. My PCP who I see next week is trying to help me find a new rheumatologist. My hepatologist recommended a group but they aren’t taking new patients but she also insists I establish a firm relationship with a rheumatologist because of overlap and some bad symptoms I have had to ensure we rule in or out any other condition,

Anyway I know some of you also have Sjogren’s, some RA, some polymyalgia rheumatica, some lupus, some other overlap diseases. Before I see the next rheumatologist I’d like to have some ideas to try to narrow down so isn’t a lot of wheel spinning. Though I have dry mouth and eyes, I tested negative ANA, SSA and SSB. My sed rate was high, my C4 low. There’s other stuff too, but anyway not only do I think this would help me but maybe others who are wondering “is all the symptoms I have just PBC or what other possible overlap AI condition could I have”? Thanks.

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CeeCee101 profile image
CeeCee101
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22 Replies
Samanthaann profile image
Samanthaann

Hi ceecee im wondering the same. I have muscle and bone aches I have never had before. This PBC is so crazy. I hope you get some answers keep us posted.

Chris21 profile image
Chris21

I would suggest you look at the lupus uk forum. As I think you will find all the answers to your question there. Not everyone on the forum has lupus, they have sjogrens, fibromyalgia amongst other things and we are a friendly bunch 😉

Readlots profile image
Readlots

I have PBC with AIH overlap. I’d assumed my aches and pains were menopause, then linked to my liver. Turns out I’ve been overdosing on thyroxine for over a year. my levels changed and dympyoms got worse after the bivalent Covid vaccine but it wasn’t picked up. SoId suggest getting your thyroid levels checked. I didnt realise it could cause muscle and joint pain but it does.

Artsy123 profile image
Artsy123 in reply to Readlots

Hello, I’m wondering more about your symptoms post COVID vaccine. I just got mine and got flooded with throat issues after salagen was making it better!

Readlots profile image
Readlots in reply to Artsy123

Hi, I didn’t have any throat symptoms following the vaccine, mine were arm ache which developed into a frozen shoulder, jaw ache, palpitations, fatigue and tingling hands and feet. All symptoms of too much thyroxine. Id been on the same dose for years with regular testing I was at the upper range of normal. These symptoms started 10 days after the vaccine. There do seem to be reports of the vaccine interacting with hormones and thyroxine is s hormone. Could just be coincidence and it won’t stop me having the next vaccine, but it is something to be aware of.

Artsy123 profile image
Artsy123 in reply to Readlots

Thank you for the reply!

Lu11 profile image
Lu11

I hope you find a better Rheumatologist, I’m in the process of finding a new one as well as a new Gastro. I have RA and horrible dry mouth but tested negative SSB. Keep us posted please 💓

CeeCee101 profile image
CeeCee101

ok so far from these responses we have:

Sjogren’s

Lupus

Fibromyalgia

AIH

RA

I also recall someone mentioning polymyalgia rheumatica

I will try to keep this list updated if I get or see other answers. I think it would be helpful as a list.

Turquoise2075 profile image
Turquoise2075 in reply to CeeCee101

Hi CeeCee,

I have had pustular psoriasis affecting my left foot since 2010 and only in the last coupe of years or so I’ve developed joint pain in my feet, especially the joints of both big toes. I have wondered about psoriatic arthritis. I can get sharp pain when walking but only sometimes. I’ve also had pain in my thumb joints and lower back come and go. These joint pains have only happened since developing PBC, so I don’t know if it’s PBC or something else but it seems linked to autoimmunity generally. I have had dry scratchy eyes but it’s much improved and so far doesn’t seem to be Sjoegren’s. At one point I seemed to be developing symptoms of drug-induced Lupus linked to a blood pressure med. When I stopped the med the symptoms went away. I did not test positive for the ANAs that can be an indicator for Lupus. So it can all be quite confusing.

I’ve had fibromyalgia since I was 13 but the pain of that is quite different to joint pain. It feels more muscular and involves very tight fascia.

I have a feeling that there is almost like a spectrum of related autoimmune conditions that can link to similar processes in the body. Sometimes particular diagnoses fit and sometimes you can kind of have a bit of a few things without it being clearly diagnosable. I really hope you find a good rheumatologist who can help give some clarity.

CeeCee101 profile image
CeeCee101 in reply to CeeCee101

adding pustular psoriasis

CeeCee101 profile image
CeeCee101

updated:

ok so far from these responses we have:

Sjogren’s

Lupus

Fibromyalgia

AIH

RA

polymyalgia rheumatica

Pulstular psoriasis

billhunter profile image
billhunter

Hi All, there seems to be a common theme here. From my regular blood tests and timings I am absolutely certain that the Covid vaccine (no 4, mrna spring 2022) caused me to contract polymyalgia with massive inflammation results, very high CRP and ESR as well as liver functions. The French research is also conclusive about this. Seeing a rheumatologist months later resulted in denial. However eventually I demanded steroids with immediate beneficial results.

There are clearly connections that often patients can see better than consultants. Conclusion - always challenge "professional " opinion if things don't make sense.

CeeCee101 profile image
CeeCee101 in reply to billhunter

You’re certainly entitled to your view. However this thread was just meant to be a central list where people can post their overlap AI conditions. Thanks

zinchunter profile image
zinchunter in reply to CeeCee101

My apologies.

CeeCee101 profile image
CeeCee101

updating list:

Sjogren’s

Lupus

Fibromyalgia

AIH

RA

polymyalgia rheumatica

Pulstular psoriasis

Raynaud’s syndrome

Autoimmune thyroid disease

CeeCee101 profile image
CeeCee101

updating list:

Sjogren’s

Lupus

Fibromyalgia

AIH

RA

polymyalgia rheumatica

Pulstular psoriasis

Raynaud’s syndrome

Autoimmune thyroid disease

CeeCee101 profile image
CeeCee101 in reply to CeeCee101

Adding autoimmune thrombocytopenia, which someone posted today

Readlots profile image
Readlots

Here’s another couple to add:

Type 1 diabetes

Vitiligo

CeeCee101 profile image
CeeCee101

updating list:

Sjogren’s

Lupus

Fibromyalgia

AIH

RA

polymyalgia rheumatica

Pulstular psoriasis

Raynaud’s syndrome

Autoimmune thyroid disease/autoimmune thrombocytopenia

Type 1 diabetes

Vitiligo

Donti profile image
Donti

Hi CeeCee101. You can add spondyloarthritis to your list. I think there are several forms of arthritis that fall under this diagnosis. My diagnosis is new so can't offer much yet.

CeeCee101 profile image
CeeCee101

updating list:

Sjogren’s

Lupus

Fibromyalgia

AIH

updating list:

Sjogren’s

Lupus

Fibromyalgia

AIH

RA

polymyalgia rheumatica

Pulstular psoriasis

Raynaud’s syndrome

Autoimmune thyroid disease/autoimmune thrombocytopenia

Type 1 diabetes

Vitiligo

Pulstular psoriasis

Raynaud’s syndrome

Autoimmune thyroid disease/autoimmune thrombocytopenia

Type 1 diabetes

Vitiligo

Spondyloarthritis

CeeCee101 profile image
CeeCee101

BTW was just Dx with overlap RA. My hepatologist emphasized the importance of all of us having an established relationship with a rheumatologist. My rheumatologist said she rarely sees patients that only have PBC. Just FYI

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