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MonicaEve

Digital Ulcers Due To Calcinosis/ranynau's

11 posts in this topic

Greetings! My first post. I'm basically looking for practical advice dealing with care for finger ulcers. Altho I've had Raynaud's/Calcinosois for may years am experiencing my first actual persistent outbreak...seeping white fluid, since last October. Yes, I've consulted with rheumatologist and others...am looking for care advice.

 

Thanks!

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Hi Monica,

 

Welcome to the sclero forums! I'm sure sorry you are having problems with ulcers. Here is a link for you about treatments of ulcers I hope you find it helpful.

 

You will find a lot of information, support and friendship here. I look forward to knowing you better.


Warm and gentle hugs,

 

Pamela

ISN Support Specialist

International Scleroderma Network (ISN)

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Hi Monica,

Welcome to the forums! I am glad you found us, but sorry it is because of so much trouble with your ulcers.

Here is a link to our page on digital ulcers from the Sclero A to Z website. You will find lots of information there including some on treatment.

Here is a link to a news article posted in our newsroom about treating digital ulcers with Bosentan.

Here is another link to a previous discussion we had talking about ulcers. If you read through the posts here you will see some different suggestions for treating ulcers.

I hope some of this information is helpful to you.

Again, welcome!

Warm wishes,
Heidi

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Yes, I've read all the links and am well-informed but what I'm looking for is fellow sufferer practical tips...e.g. do you keep ulcer occasionally covered with bandaid or uncovered? Any creams you find useful etc etc So I'd like to hear fromindividuals subscribers to this forum. Thanks

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Welcome Monica,

I have Raynaud's but no ulcers. Does everyone get ulcers who has Raynauds???

Carrie


CarriePan :fairy:

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Carrie,

I've had Raynaud's for four years and have never gotten an ulcer (Knock on wood).

 

MonicaEve -

Here's another discussion on the neverending ulcer! I also found some comments throughout several other threads that nitroglycerine cream (3 times a day for 20 minutes) was helpful as well as a bandage called duo dermatologist.

 

It appears that the best way to deal with ulcers is through prevention; unfortunately, that requires another medication in most cases. Hopefully more people will chime in with some positive remedies. I sure hope you can find something that works for you.

 

Big Hugs,


Janey Willis

ISN Support Specialist

(Retired) ISN Assistant Webmaster

(Retired) ISN News Director

(Retired) ISN Technical Writer for Training Manuals

International Scleroderma Network (ISN)

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Janey~

It's scary to read all these things that could happen to us. I've been blessed so far. No ulcers on my fingers but they are cold all the time and it's very painful. I did buy throw away hand warmer packs for when I'm outside at my kids baseball or soccer games. They work great with mittens LOL Actually just used them the other day! Isn't this supposed to be spring???? Wearing mittens in April HA!! :lol:

Hope you're doing ok!

Carrie


CarriePan :fairy:

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Hi - no not everyone gets ulcers...this is my first after probably 40 years with Raynaud's! Otherwise my Raynaud's is quite well controlled even after all this time! I've been luck!

 

Thanks for your note.

M

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Monica~

I'm sorry you have them now but glad it's taken this long to develop, in a good sort of way. Do you have other symptons? I didn't know that you should wear gloves when you clean LOL where have I been????

Take care~

Carrie


CarriePan :fairy:

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Monica:

 

So sorry to read about your ulcer problem. I've had raynaud's for 27 years & dealing with the on going pain, gangerine, calcinousis, little dry spots on the finger tips & even amputations is very frustrating. Unfortunately most Dr's, even dermatologists, don't have a cure for ulcers. I've tried evertyting the doctors have offered, including hyperbaric, but I am now resolved to the fact that once your extremities get plugged up or the nerves turn off, you just have to stay warm & try not to get stressed.

I am in Surrey, Canada, & quite ofen I find the humidity is harder to take than the winter cold in Calgary. Most days I have bandages on my fingers to cover the sores & to keep the sores moist. I use either Ozonol or Polysporin with pain relief (Lidocaine) as I find that leaving the sores open they don't heal any faster & if I bump or bang my fingers the pain is just unbearable. I've also had some infections that took antibiotics to clear up so these ointments help to keep the wounds clean.

I wish I could offer you a quick & definate solution, but reading all the replies about reading more about what you already know prompted me to share my story. You just have to do what you are comfortable with & you may have to try many creams, ointments & even natural treatments to find your zone. The best treatment I found was Viagra & then Bosentan. These helped to reduce the pain & helped somewhat with the healing. But, as I've had this problem for so long, I think that after awhle I can't change plugged up arteries & nerves that don't open blood vessles.

One thing you must do is keep hammering ALL your doctors to try something, anything to increase your circulation & take the pain away. Good luck in your search for a solution.

John L. ;)


John L

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Hi John~

It's frustrating and quite annoying having Raynaud's isn't it? I've had it at least over 10 years of realizing I had it. What other symptoms do you have?

Have a good one...

Carrie


CarriePan :fairy:

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