MMP Mucous Membrane Pemphigoid...anyone else?

[arcr]

I woke up Tuesday with bumps in my mouth. Went to the periodontist this morning and she gave me this diagnosis. I have to go back in 10 days and she will do a biopsy for confirmation. I also have retinal vasculitis. Does anyone have any experience with this? Thanks

[lovenothate]

Hi there,

At one stage this looked like a potential diagnosis for me but I had it ruled out by biopsy. Thought I would mention, though, that there is a really friendly Facebook group dedicated to this condition. If you’re on Facebook, definitely search it up and you will be welcomed warmly.

All the best,

Will 🙂

[arcr in reply to lovenothate]

Thanks so much!

[Christophene47 in reply to arcr]

I know pemphigoid is a serious condition; I hope your's will be ruled out by biopsy as arcs was. It was considered for me years ago for a skin blistering problem, which turned out to be a drug allergy to Naproxyn.

I also have a central retinal vein occlusion which I just found out from orbit duplex doppler results. Waiting to hear back from neuro-ophthalmologist what, if any, further steps should be taken to protect my vision and prevent furher complications. What are your symptoms of retinal vasculitis? Is it involving vein or artery or both. ? How was it diagnosed?

What is the plan of treatment if you know yet? You are the only other member who has mentioned retinal involvement. Is your vasculitis systemic, or limited to the eyes; both eyes or one? How is your vision? Did you experience vision loss for several minutes as happened to me.

We have something in common so let's compare notes when possible.

Good luck arcs with your biopsy. I pray pemphigoid will be ruled out for you. Keep us informed on your retina issue.

[arcr in reply to Christophene47]

In short, I had been feeling "not right" and no doc could figure it out. One day while at the market, I felt as though my glasses were dirty...couldn't see through them very well. Realized they were fine but had a gray area in my right eye. Went to doc, found I had Branch retinal artery occlusion. I have been on aspirin and Prednisone. The worst part for me have been the effects of the Prednisone and the brain fog. I go to my retina specialist every 3 weeks for scans, sometimes they scan after injecting dye. Yes, I have it in both eyes and systemically. I have never regained vision bc after blockage of blood to tissue, that tissue died. I also had to have laser treatment for néovascularisation...the growth of new capillaries which will block ones vision if left unchecked. I know most people with autoimmune diseases have more than one. I also have pain in my elbows, ribs and hips that no one can explain, so I assume there's another one lurking somewhere. Thanks for the encouragement and good luck to you!

[arcr in reply to lovenothate]

What were your symptoms? What made the doc think that's what it could be? I am hoping they are wrong about me too.

[lonelyone]

OK. I just responded to someone else's post because some symptoms were the same, and I am just at the start of being dx'd, but I didn't mention this?? Omg. I have had what your describing many many times. And as usual(I do have a new Dr now, but hate bombarding her)was ignored!

Please explain.. Because I am due for another eye exam.. I keep putting off because when I had my first exam after almost two years of plaquinil, (I didn't have funds), my eyes were dx'd w so many problems. Went from perfect vision to needing bifocals, no perpetual vision, gone, and something wrong w right eye?

This journey has and is becoming too overwhelming for one person.

Thank you...