Fairly horrible photo of my hand

[lesleyg]

Sorry for such a graphic photo, but someone asked for updates. The reason I’ve put this one is it shows how deep the ulcer/lesion had gone down, you can actually see the tendon. Even the community nurse who is supposed to be a wound care specialist seemed a bit horrified. The good news is my immunologist, who is currently overseas, will be back next week and a lovely secretary made sure that I have an appointment next Friday week at 10am, so I will hold out to then and see what he says. I'm not sure how I do this but I regularly lose my post, just as I’ve finished and about to post it. The final post always ends up shorter, lol. Janie, our history sounds very similar but I haven’t tried Dapsone yet.

Thanks everyone for your encouragement, talk soon Lesley

(PS it does ache but not as bad as what it looks!). The white around the edge is an ointment called Calmoseptine which the nurse used as a barrier cream.

[Missey1]

Oh Lesley feel so sorry for you this has been a long time. Nothing useful to say can only send my love and say hang on till friday. Please keep us posted brave lady x

[gillianTS]

Lesley this is really nasty, pleased you are seeing the nurse and arrangements made for next week with the specialist, fingers crossed he can get this under control for you very soon. Big hugs.

[Dan_NY]

I have seen your posts about this and honestly I wonder if this could be a "bed sore"?? Obviously I am not a doctor but this kind of looks similar. Maybe someone with more medical knowledge may respond. I had a bed sore that wasn't anywhere near as bad looking as what you have. But.. it does remind me of that. Any rate, food for thought. I really hope you can get it resolved soon.

[lesleyg]

Thanks everyone. I'm not so sure about brave- just doing what I have to to hang in there! I find keeping busy helps, I’m trying to learn how to do patchwork quilting. There are a couple of extremely good seamstresses in my family, just hoping there might be a latent gene hiding somewhere there in me.

Dan, I don’t have any experience with bed sores either, but thought they came from pressure. It’s a bit hard describe where this is but according to my GP it is on the dorsal (opposite to the palm) side of the hand and it is at the base of where the thumb and index finger would join. I've always had a lot of pain in this area and think that a clot may have been forming over time.

A GP told me years ago that large lesions can form below the top layer of the skin and eventually the skin dies in that area because it is not getting any oxygen. Hence what has happened to me a few times now. With either no or very little warning the area will cave in and all of a sudden one has a very large 'punched out' lesion to contend with.

Hopefully the immunologist might tell me something next Friday, but he is very 'old school'. Cheers Lesley

[AusBehcets in reply to lesleyg]

Hi Lesley, sorry you are suffering. Some thoughts... I had good response to one week course of Doxycycline in terms of my ulcerating hand lesions. 30 years of suffering & no-one had ever thought of trying Doxy! Dermatologist was surprised but happy for me (as Doxy was prescribed by someone else for something else!!! Gastroenterologist to treat ?Small Intestinal Bacterial Overgrowth SIBO ... bloating of gut after radioactive scan!)

Another thought... you could ask for referral to an Infectious Diseases specialist (major teaching hospital) & they could consider Mycobacteria ulcerans which is carried by our native fauna. Treatment antibiotics of the right type.

Best wishes for healing! Very interesting following your progress & treatment. Please keep us updated. I'm not doing so well at the moment, unsure of what to do next! Got chronic shoulder joint & neck pain. Had MRI R shoulder got torn ligaments & some unknown process on bone?? Might see shoulder specialist for opinion xox

[lesleyg]

Thanks for that. Seeing dermatologist on Friday. Will keep you posted.

[marimarichristian]

Find a wound specialist. There's a wonderful woman at UCSF, Dr Mauro. She's the only doctor at that God forsaken place, I'd ever continue to see.

[lesleyg in reply to marimarichristian]

Thanks for that, not sure where UCSF is but I am in Sydney Australia 😊

[marimarichristian]

Oh dear . The wound specialist is in San Francisco. So that's not going to do you much good. Most good teaching hospitals should have a wound specialist- because without treatment, you could eventually lose your hand.

[lesleyg in reply to marimarichristian]

Fortunately it has healed over but I am having a lot of trouble with pain in the hand and ulcers on second and third fingers. Have standing appointments in the next two weeks.

[marimarichristian]

Sounds awful. I'm glad you've got appointments soon.

[Ashveer]

Dear Lesleyg, I have been always thinking about you, although, I rarely come here, life as you know is a challenged for me with my son's Brainstem/Pons Lesions Behcets, my prayers and thoughts for you; Vitamin K2 - if you are not on any anti-coagulants, you can perhaps take in world's finest dietary option, Natto Fermented Soy Beans - not regular soy, that will contain highest Vit. K2 of anything anywhere in the world, walmart.com/ip/Shirakiku-Br...

These beans help support the blood vessels smooth muscles - that are damaged in inflammatory conditions - my son will be starting on these today - dietary breakfast items, very acuqired tasted, I tried it, you will have to get use to it, but the advantages are great, Vit. K2 natural therapy with your doctors knowing, please try this...I have researched a lot about the blood vessels internal mak up - my son has ASMA )anti Smooth Muscle Antibody he is positive at titer of 1:40 cause of concern that he has liver damage and throughout the body blood vessles as they have smooth muscle construction - ask you doctor about your ASMA+ most people in rheumatic diseases will have this ASMA+ and you can guide it with Natto Fermented VIt. K2 beans....I really hope you will discuss this with your doctor, as this will help you rebuild your blood vessles...there is no other source of Vit K2 higher than Natto Beans, it comes from fatty organs, ie. liver of animals...I hope you will feel better, and I hope this will help you with fermented soy Natto Beans in Asian Stores, Japan...best to you today..

[Solsken]

Have you tried Negative Pressure Wound Therapy, I’m not certain it’s possible on hands. It’s quite amazing on legs and arms. I had a PICO pump on my leg and the ulcer (looked exactly as yours) healed in 6 weeks.

Do hope it will heal fast.

All he best.

[lesleyg]

No - up to date they have been allowed to heal naturally by packing it with gauze ribbon dressings etc. I’m actually amazed it healed so quickly, although I’m having trouble at the moment with ulcers and pain in the second and third fingers