Help

[kimbalina]

So, I have suffered with ulcerated finger tips for many months. They have been infected as well. Treated with antibiotics successfully thank god! For the last couple of months my right ring finger has been ulcerated and infected. Or so I believed. Went back to the GP the other day after second course of antibiotics had no benefit. GP said it is actually not ulcerated, I am “losing the tip of my finger” !!!!!!!

GP wants me to be seen by my rheumatology team at guys. So don’t know what they will advise yet.

Has anyone had this? Is there any treatment? Any good news would be appreciated I am a bit nervous.

[Duttie]

Hello, I had an ulcerated thumb tip for 18 month, it was treated by the ulcer clinic at Leeds with Manuka honey, then suddenly it just healed up. What came out of it was both hard and liquid calcium. I just wonder if yours is the same. I presume that it has been swabbed to eliminate bacteria. I would definitely go to the experts.

[kimbalina in reply to Duttie]

Thank you Duttie. I am hoping my GP is wrong and it is just a stubborn ulcer. Guys have given me a very quick appointment tomorrow, only spoke to them today on the phone.

[Duttie in reply to kimbalina]

My word that was a quick app, please let me know what they say and their course of action, Thanks

[kimbalina in reply to Duttie]

Yes will do. Thank you again

[pino99]

Ask to be put on sildenafil, that is the golden treatment these days. My ulcers healed within two weeks when I was put on that. I did lose the top third of my right index before that, so don't let them fob you off. Ask them to consult Prof. Denton from the Royal Free if in doubt.

Hope it gets sorted soon. Best wishes

[kimbalina in reply to pino99]

Hi Pino99

I was wondering if your ulcers healed gradually over the 2 weeks on Sildenafil or at the end of that period?

I have been taking the same dose as you for one week now and not much inprovement.

Kim

[pino99 in reply to kimbalina]

Hi Kim,

I think they healed towards the end of that period. One thing I realised was that I needed to protect them from even the slightest knock and once I had them well bandaged and cushioned they started covering over and healing. I hope they heal very soon for you.

Pino

[kimbalina in reply to pino99]

Thank you very much

Take care.

Kim

[hunkyd0ry]

Sounds like they need to determine if it's indeed an ulcer or maybe calcinosis.

If it's an ulcer they might put you on Iloprost which is given by infusion. This is supposed to help pretty quickly and will also stay in your body for a longer time to get you through the cold months. (I don't have any first hand experience yet as I'm waiting for my first course on Iloprost which will be in January)

Sildenafil definitely helps me. I noticed the difference within a few days once they started me on a 6-week-course (3 per day), once the course had finished and then when they started me again (only 1 per day this time).

But since the freezing temperatures have set in even this is not enough for me anymore. I a desperately waiting for the Iloprost and have meanwhile gone back to 3 Sildenafil per day (with limited success).

Every body is different though and I am sure the doctors will find what works best for you.

Are you currently in the care of specialists? The Royal Free is great (although it was a painstakingly long process to get in the system to start with) and I am getting fast responses even by email in between my appointments if something is urgent.

Good luck, keep warm and hold on to these pinkies (or in our case "whities" and "purpelies" 🙄)

[kimbalina in reply to hunkyd0ry]

Hallo hunkydory

Thanks so much for your message. I really hope the illoprost works for you. I know a lot of people swear by it. Unfortunately I had it last year and it did nothing for me. I will let you know how my appointment at guys hospital goes today. I have been under this clinic for a while (Professor DeCruz). They are very good but have, fortunately never needed

Help between appointments

Kimbalina

[Hidden]

Hi Kimbalina, I empathize with your pain and the stress that goes with it. I have had many serious ulcers and I find the best treatment is ongoing Niacin. I take 500 mgs. three or four times daily. Twin Labs is the best brand and is available at the Vitamin Shoppe. You might want to read the book "Niacin, the Real Story". It will help you understand the benefits of Niacin. I use pocket hand warmers inside my mittens to keep my fingers warm. This works well for me, since I have one finger that becomes ulcerated if I am not careful. I wear a mitten on my left hand all the time when I am working. You will heal, just give it time and consult only reputable experts. Read as much as you can about Raynaud's. Soak your hands in warm water. I will pray for you. Please let me know how you are doing.

[kimbalina]

Hi to all you lovely people who replied to my plea for help with manky fingers!

I attended Guys hospital on Thursday and saw Professior D’Cruz. He is so helpful. They gave me lots of blood tests, requested vascular scans, increased my warfarin dose and put me on Sildenafil straight away.

Now hoping that meds Work. I am happy with what they are doing.

Does anyone believe the ulcers happen or get worse when we are under a lot of stress?

Thanks once again for the support.

Kim

[tall-tim in reply to kimbalina]

I have noticed that my fingers get noticeably worse if ever I have tea or coffee.

[Stephanellie in reply to kimbalina]

Stress is definitely a factor! Caffeine too.

[kimbalina]

Thanks yes I thought so. I am under a great deal of stress at the moment. Felt it was significant that my fingers are worse than ever