Oral biopsy when immunosuppressed.

Posted by ktgirl @ktgirl, Dec 5, 2023

I'm worried about having an oral biopsy when I'm on Actemra that suppresses my immune system. I have RA along with other autoimmune diseases. A year ago I had an infection on my thumb that took months to heal after many visits to a wound clinic and then I was off Orencia all that time. Then when it finally healed I had knee replacement surgery and was off the drug another month. It pretty much goofed up my body then after the surgery I ended up with pneumonia and once I was off antibiotics for that I started Actemra. The pneumonia left me with pulmonary fibrosis and I had to quit my job. To say the least it's been a rough year for me and I don't want to take a chance with this biopsy. I have Sjögren's so my mouth is super dry and it's painful to eat any fruit or anything slightly spicy. I wanted to have an oral surgeon look at it but when he said I might need a biopsy it made me very apprehensive about it after this last year.
What do you all think? Any suggestions? Am I being too concerned about this?
Any suggestions??
Thanks!

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@cpd54

MK 7 is a form of vitamin K2. I have osteoporosis and MK7 and MK4 help your body to utilize calcium correctly. Along with D3 and A.

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Just got back from the dentist. Didn't need a biopsy thank goodness! He thinks it's just the dry mouth causing a fungal infection which is pretty common. He prescribed a mouth rinse with Nystatin, an antibiotic and Benadryl in it. I asked about the K2 and he hadn't heard anything about that but said it's worth a try. So I'm somewhat relieved although I probably still won't be able to eat citrus fruits or anything acidic. Oh well! That's life!
Thanks again!
Carol

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How awesome!!! I have a Mouthwash I use for dry mouth because my sinuses are messed up from car wreck decades ago - and consequently I’m a mouth breather.

Very relieved and happy for you!!

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@ktgirl

That's good to hear regarding the vitamin K2. I've read a lot of good things about K2 and might check that out. I think it is also recommended to take D3 with K2 together. We heard about that after the Covid stuff. My husband takes it so I better give that a try. Glad to hear it may be helping you. Pretty harmless to try it anyway. So what is MK7? I'm not familiar with that.

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@ktgirl Please consult with your doctor before you start any supplements!

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@cpd54

I opted not to have the biopsy done for diagnosis. I just treat myself as if I have Sjogerns for sure. Having a definitive diagnosis one way or the other doesn’t change that. The things I do to help my Sjogerns are good for my overall health anyway.

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I am on a sjogren's facebook page with thousands across the US. From what people have said know this. If your Sjogren's gets worse (which it will for 9 out of 10 people) and you need RX, or your MD who is helping you retires, moves. MOST Rheumatologists will not treat without a diagnosis. I read this at least once a week on the facebook page from people.

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@gracenad

I am on a sjogren's facebook page with thousands across the US. From what people have said know this. If your Sjogren's gets worse (which it will for 9 out of 10 people) and you need RX, or your MD who is helping you retires, moves. MOST Rheumatologists will not treat without a diagnosis. I read this at least once a week on the facebook page from people.

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I've actually already been diagnosed with Sjögren's. I saw the oral surgeon because of my mouth being so sore I can hardly eat anything that is acidic or rough in texture. He didn't think the biopsy was necessary in my case. I'll have to look into that Facebook page. Always good to hear what others are finding that helps. Thanks for your response.
Carol

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@ktgirl

I've actually already been diagnosed with Sjögren's. I saw the oral surgeon because of my mouth being so sore I can hardly eat anything that is acidic or rough in texture. He didn't think the biopsy was necessary in my case. I'll have to look into that Facebook page. Always good to hear what others are finding that helps. Thanks for your response.
Carol

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Sure, know a Rheumatologist is not going to go by your Dentist's diagnosis to treat you. Did the Dentist give you the RX for dry mouth that a Rheumatologist of ENT would give? For someone who has had Sjogren's for 30yrs, just trying to warn you that you can be putting yourself in harms way not having an MD for Sjogren's, because if an issue comes up you could wait months to get into a Rheumatologist. It generally starts with dry mouth and/ or eyes, but Sjogren's only gets worse not better over time. Best Wishes

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@gracenad

Sure, know a Rheumatologist is not going to go by your Dentist's diagnosis to treat you. Did the Dentist give you the RX for dry mouth that a Rheumatologist of ENT would give? For someone who has had Sjogren's for 30yrs, just trying to warn you that you can be putting yourself in harms way not having an MD for Sjogren's, because if an issue comes up you could wait months to get into a Rheumatologist. It generally starts with dry mouth and/ or eyes, but Sjogren's only gets worse not better over time. Best Wishes

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The oral surgeon only prescribed a mouthwash to help with the pain in my mouth. I go to a rheumatologist regularly and will see him next week. I am wondering what medication is prescribed for Sjögren's? I take plenty of meds now and not sure if any of them are for the Sjögren's or just the RA and schleroderma that I have. I now have pulmonary fibrosis from the schleroderma so I may have to start a new drug for that. Hard to know what to treat first!!

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