Hi, I'm just wondering if anyone here has Lupus along with PBC? I have developed a distinct butterfly rash on my face that has been appearing on and off over the last few weeks. In late 2022 I became aware that a blood pressure med I was taking seemed to be causing a rash. If I stopped it, the rash went away. If I started, it came back again. I did this several times. I read cases of this blood pressure med (atenolol) being linked with the onset of Lupus. I was able to stop the med and manage my blood pressure without it. Although the rash looked identical to examples online that are typical of Lupus, the doctors I spoke to didn't know about the atenolol-Lupus link and didn't think it was connected. The more recent rash I have now is specifically on my face in the butterfly pattern of Lupus. It has a burning sensation, similar to sunburn, but I know I haven't been sunburnt.
None of this necessarily means I have Lupus, but just interested to know if anyone else does and what your initial symptoms were? There is apparently a link between PBC and Lupus:
Although older studies seem to suggest the link between the two conditions is rare, the more recent work seems to suggest a potential causal relationship.
I'm really hoping I haven't acquired another autoimmune disease. Just interested to hear if others have the PBC/Lupus combo.
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Turquoise2075
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So many of PBC patients develop other autoimmune diseases - often several. They are all related. I would suggest you go to your primary first and ask their opinion. You are right about the butterfly rash being related to Lupus. It might even be better to see a rheumatologist for proper screening for Lupus. Some helpful information might be from the Lupus Foundation of America.
Thank you Donna. I’ve developed a few symptoms consistent with Lupus at present and I imagine the GP may run some tests and refer me to a rheumatologist. I’m in Australia so I’m looking to see what support organisations exist here.
There is a PBC organization in Australia. Are you aware of that? I met the coordinator of it when I was at The Summit in Edinburgh this past Spring. I can give you her contact info if you don't have it already. She may be aware of other auto immune organizations there as well. Osteoporosis and Sjogrens Syndrome are the 2 most common autoimmune diseases that people with PBC also have. Sjogrens is also known as Sicca Syndrome, characterized by dry eye and mouth for most.
Thank you Donna. I'm aware of the Liver Foundation here but wasn't aware of one specifically for PBC, so I would be happy to know the contact for the one here. At the time I was diagnosed with PBC I had extremely dry and scratchy eyes and for a while and wondered if I was developing Sjogrens as well. I'm familiar with Sjogrens as my aunty has it. When my liver readings later balanced the dry, scratchy eyes went away.
I sometimes feel that although these various autoimmune diseases have discrete labels/names, there is a lot of crossover and it feels like a major autoimmune process that can go off in all these different directions, depending on the individual. I'm learning to be patient with it all.
I just replied to someone else just now about a book I'm reading called Gut Renovation.' It talks so much about how the condition of our gut greatly relates to the amount of inflammation we have in our bodies. She mentioned the correlation of so much inflammation from - and caused by - other autoimmune diseases. You are right, I think, about it all being connected.
Thanks Donna, that book sounds very interesting. I will have a look at it. In 2022 my liver readings were not improving on Urso and I was very unwell. I had read of someone with primary sclerosis cholangitis improving greatly with diet. I decided to go to a naturopath who does advanced microbiome testing. He has two uni degrees and everything he does is evidence-based, which I felt was important as some naturopaths do a lot of guesswork. The testing showed significant issues including a major overgrowth of a pathogenic bacteria, intestinal permeability and very low butyrate (which is a common finding in PBC). He put me on a bunch of supplements and for the first time in years my liver readings totally normalised. I was really good for several months and the readings stayed normal but then the fatigue and cognitive issues came back. That's when my liver specialist put me on obeticholic acid and that improved those things again. So the gut has been absolutely central in my case. I've had 3 lots of microbiome testing now. The intestinal permeability has healed and the bacterial overgrowth brought back to much better numbers. The butyrate is better but still a bit low. The naturopath is very good at explaining the processes to me and draws diagrams to show what is happening in the gut and how it affects things like inflammation. While my liver specialist is always pressed for time (consultations are always under 10 minutes), the naturopath spends at least an hour with me and is so thorough. So the gut approach has really helped.
So glad you know about the microbiome aspect of our health. The book is really fascinating, makes so much sense. Did you change your diet at all when all this was going on? The author talks so much about inflammation, I was wondering if you did any form of an anti inflammatory diet? I'm really considering starting to take prebiotics./probiotics. Do you take any now? Does she recommend any particular brand?
I did mostly eliminate the nightshade vegetables, only because I read of a lot of people mentioning this in relation to inflammation and autoimmunity. I don't know if this has made a lot of difference but I do seem to have inflammatory responses to too much tomato if I do have it and potato seems a bit problematic too. I had allergy testing that the naturopath ordered as well. I was found to be very strongly allergic to the casein in dairy (especially cattle dairy and to a lesser extent goat), strongly allergic to beef and mildly allergic to lamb. So I don't have any of those. It seems I have acquired these allergies more recently as I didn't seem to have them as a child or earlier in life. I had already removed gluten in 2020 and that led to a big reduction in migraine headaches and was clearly inflammatory. My first microbiome test showed high zonulin which is an indicator for intestinal permeability and gluten intolerance. Now that permeability has healed I can tolerate some gluten occasionally. In addition, I had started a low sugar diet from May 2022. I didn't eat lots of sugar before but I pretty much eliminated it apart from natural sugars such as in a piece of fruit. I definitely do better with very minimal sugar. I eat predominantly whole foods and rarely have any processed foods. I have some histamine intolerance more recently triggered by HRT medication, so tending towards a low histamine diet now too. And I'm also sensitive to salicylates so I've reduced consumption of high salicylate foods. I still manage to find food to enjoy despite all of these restrictions! I use quinoa a lot, broccoli, kale, sweet potato and cauliflower, and other veggies and fruits. I use herbs and spices (especially turmeric). At the moment I am eating one gold kiwifruit a day recommended by the naturopath. My primary animal foods are fish and chicken. I occasionally have pork. I also have eggs. I eat quite simply and I am at my healthiest when I cook all my own food from scratch.
I looked at the contact information I got from The Summit last Spring sponsored by The PBC Foundation. I only have the name of Sally Castle, the CEO of the Liver Foundation. This may be the same organization you mentioned. I would still reach out to her and see how she can help. She is very passionate and wants to make a difference.
sally@liver.org.au
Do you belong to The PBC Foundation? If not, please do. They have SO much to offer in the way of education and support. They are in over 70 countries. It's free to join. They also have a phone app that is very comprehensive and helpful.
Thank you very much Donna. Yes, I am a member of the PBC Foundation. It’s good to know of a contact in Australia. It must be rare as every GP I’ve seen here in Australia has never heard of it before. A couple had heard of PSC but not PBC. Thanks again 🙏
I don’t have lupus. However, it is not uncommon to have more than one auto immune diseases. I happen to have thyroid disease, primary biliary, cirrhosis, and rheumatoid arthritis.
Thank you Lorraine Louise. Yes, it seems to be very common to have more than one. I'm sorry you have those three. I've had pustular psoriasis too and at times in the last couple of years I was also showing signs of psoriatic arthritis but that is intermittent and mild if it is that. I have fibromyalgia too but that is since aged 13 and it didn't used to be considered autoimmune but there now seems to be some debate as to whether it may be autoimmune.
Thank you so much Lorraine. It is great you are still managing to work and it is so true that every day is a blessing. I was doing my best to get back to work but the combination of all my health issues, being a carer until recently plus complex PTSD finally defeated me. I have had to go on a disability pension. It is not how I wanted things to be but it has been such a struggle, a lifelong one really. I'm working towards a small business idea that is manageable for me to try to develop some kind of income to initially supplement the pension. I would love to be independent from it if I could.
Yes it sounds like you have your struggles as well. I hope you are able to get your small business going.
I know how difficult it is to make ends meet out of fixed income. I am 67 years old. And on Social Security I never thought I would be , still working at this age. As you know all too well fixed income, doesn’t cut it anymore.
I’m sending you all good wishes. That things will work out,for you for you!
Thank you so kindly Lorraine. I have certainly improved compared to where I was and feel I’m on a healing path, even if it is gradual. Sending all good wishes to you too!
I was diagnosed with PBC in 2014, then SLE (lupus) in 2019, right before COVID got started. I was already eating whole foods and using only natural products to reduce the load on the liver. I drink water as my primary beverage, but enjoy a cup of coffee each day. My primary symptoms were joint related; I could barely move by the time I saw the rheumatologist. I had immune testing from late 2013 for comparison with the 2019 tests. I was fortunate. My numbers on the immune tests were all over the place suggesting it could be other conditions. We started reviewing labs; she stopped with the comment "This is lupus!" I was very thankful she recognized it immediately and started me on appropriate meds. Unfortunately, my wonderful rheumatologist moved to another state during COVID; my PCP maintained my med refills so I could stay on track. I still struggle with fatigue, but it's difficult to say whether it's the SLE or the PBC or a combo of both. Life is different than I expected. My mind says I can do whatever I want. My body says differently. I have good days and poor days. Sufficient rest seems to be the key so I have to plan ahead. I hope you get accurate answers for your conditions. Rest assured having both is manageable. Blessings!
Dear Simba Tutor, Thank you so much for sharing your experience. In the last few days I’ve noticed an increase in fatigue after a good spell of it being much reduced. This increase has coincided with the butterfly rash becoming much more noticeable on my face. I’m having to lie down a lot again. I’m developing dry scratchy eyes again for the first time in ages. I can really feel that scratchiness right now as I write this. I really understand what you mean about the mind being sure you can do something but the body feeling completely differently. I’ve had some recent stress that could be activating autoimmune activity as well. Thank you so much for your kind response 🙏
The dry scratchy eyes are something with which I struggle. Presently, my eye doc has me on OTC moisture drops 3X a day. I will see her again in the fall; if needed she will prescribe stronger meds. I also struggle with dry mouth that wakes me at night. I am not formally diagnosed with Sjogren syndrome, but the immune panels showed elevated antibody levels for both A and B types. Oh, well! I'm glad I retired last year. Keeping up with these realities takes much time and energy. I encourage you to find what works for you. Blessings!
Thank you for the further info Simba. I’m noticing a dry mouth too but the eyes are worse. I might have to have a bunch of things looked at on blood tests. Yes, I am becoming philosophical about it too and learning to be patient and listen to my body. It almost starts to seem funny if I might have SLE, Sjogren’s etc. Like what else can the autoimmunity gods throw at me. I feel like because they all seem to be connected, dealing with the underlying driver of autoimmunity in the body generally seems like a good thing to do. I have had complex trauma from early childhood and I honestly feel like in my case that sent me on the path to autoimmunity. I’m fortunate to be working with a very good psychologist who is very interested in the mind-body connection and I’ve done some somatic work with her that has led to some very good improvements in physical symptoms, especially major breathing issues I was having that are gone now. All the very best to you and wishing you an enjoyable retirement where hopefully some good rest will support great health improvements too. Blessings to you too!
Hi again Simba, I have just thought of an SLE question I have. Have you found that consumption of garlic has caused flares for you with SLE? The reason I ask is one supplement I was on for a while was garlic (in tablet from). With most autoimmune diseases you often read about garlic being a good thing, but with SLE in particular garlic is identified as a trigger for flares. Even the John Hopkins Lupus Center recommends avoiding garlic. I had developed a discoid lupus-like rash when on the garlic supplement and also atenolol for blood pressure. (Atenolol is known for even triggering the onset of lupus in some people). I found the rash went away when I came off the blood pressure medication but I also stopped the garlic supplement around the same time. I restarted the garlic supplement a few weeks ago and now wonder if it has something to do with the lupus-like butterfly rash. I still don't know if I have lupus and initially thought the flare with rash issues I first had in 2022 was related to the psoriasis issues I've had. I am curious about garlic and considering stopping the garlic supplement now to see what happens.
Sounds interesting. I was unaware (or forgot) of the garlic connection. My husband is the cook here most of the time and uses garlic liberally. We have been on the Mediterranean diet since November and many of the recipes use garlic as the primary flavoring. Wow! I have been struggling with more flares this year. Maybe the garlic is the culprit. Thanks for bringing that to my attention. My sister also has several autoimmune diseases, many that are not yet under control. I suspect this info may be important for her as well. Sharing info is a definite benefit to this site. Blessings!
Hi Simba, I was taking the garlic supplement because the naturopath was looking to ways to boost butyrate production in the gut as butyrate tends to be abnormally low in people with PBC. Butyrate is very important for multiple functions in gut health. I also take a sodium butyrate supplement that helps but getting the gut to make its own butyrate is the goal. I’m not sure why the advice on garlic is so specific to lupus. The advice seems to be that it boosts an already overactive immune system. In reading people’s experiences, not everyone with lupus seems to be affected. Probably the only way to know is to completely eliminate it for at least a couple of months and see if it makes a difference. From today I’ve decided to go off the garlic supplement and just see what happens. I definitely seem to be in an autoimmune flare at present. The advice on the John Hopkins Lupus Center site mentions garlic, alfalfa sprouts, echinacea, sunlight and the antibiotics Bactrim and Septra as things to avoid if you have lupus. I hope your sister gets some relief soon and your flares settle down too 🙏
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