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SaraM

Is there anything new for Raynauds ulcerations caused by limited scleroderma?

11 posts in this topic

Almost four years ago I began getting numbness in my hands. It kept getting worse, so the next year I had blood work done which pointed to scleroderma. The ulcerations began forming the year before last, and they have just kept getting worse progressively over time. I moved from upstate New York down to Southern Maryland last year at this time. I hoped the move would help. The winter was predictable, with one ulcer at any given time, but this spring instead of clearing up the ulcerations got worse. I have been to my rheumatologist and a dermatologist, but I have two persistent ulcerations that haven't healed. I am going on three months with these wounds, and I could really use a new idea. So far I have been taking blood pressure medications, and it helps, but I am only 26 and my blood pressure runs low, so they don't want to increase the dose. I am just starting nitropaste. Any input would be greatly appreciated. Thanks!

 

Sara

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Hi Sara,

Welcome to the Forums!

I'm sorry you are having issues with digital ulcers. They can be very difficult to manage and have such a negative impact on our quality of life. We have quite a collection of articles on digital ulcers, as you might imagine. What seems to work for one person might not work for another, but I think it's worth pursuing something that works for you. There is a fair amount of on-going research in this area, so hopefully more effective treatments will be coming on line in the near future.

One thing to consider is, if not entirely preventable, what to do to get the ulcers to heal when you do get them. In the wound dressing section of the page I gave a link to, there are links to wound healing and wound care product index.

I hope you'll post often and let us know how you are doing.

Best wishes,


Jeannie McClelland

(Retired) ISN Director of Support Services

(Retired) ISN Sclero Forums Manager

(Retired) ISN Blog Manager

(Retired) ISN Assistant News Guide

(Retired) ISN Artist

International Scleroderma Network

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Hello Sara

 

Welcome to the forums! I am sorry you have ulcers, I haven't experienced them myself so have no suggestions for you. I do know many, many others here have them and will no doubt join in. From what I have read ulcers may be small but they are incredibly painful and difficult to manage which you no doubt already know.

 

Take care and keep posting.


Amanda Thorpe

ISN Sclero Forums Senior Support Specialist

ISN Video Presentations Manager

ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist

International Scleroderma Network (ISN)

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Thank you! I will definitely check out the articles you suggested. I just started the nitropaste, so I hope it will help. I am also going to try to go to a specialist at Johns Hopkins whom my dermatologist recommended. Thanks also for the welcome!

 

=-) Sara

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Hi Sara and Welcome!!

 

I know the situation you are in as I have been there many times before. The past two years have been the worst for me and my ulcers. I have been dealing with these for approximately 18 years. In the past I have tried everything...and I mean everything that is available and I have even done three or four studies to try to find something that works. Many people do well with viagra or cialis. Unfortunately I am super sensitive and the side effects were too much for me to handle. This might be an option for you. I too have a few persistent ulcers (5 months now) and have tried it all. As a last resort I am having surgery next month and I am thrilled!!

 

If you can find something that works for you for now, there will definitely be more things in the near future hitting the market.

 

Good luck and please let us know if you see a specialist.

 

Hugs,

Lisa


Lisa Bulman

(Retired) ISN/SCTC List Coordinator

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Assistant News Guide

(Retired) ISN Fundraiser

International Scleroderma Network (ISN)

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Hi Sara,

 

Welcome to Sclero Forums! I don't have anything much to add to the others input, so I just want to give you an extra warm hug and hope you find something to quell your digital ulcers soon.

 

All I can think of is for you to peruse our Raynaud's prevention pages, as successfully preventing attacks of Raynaud's can go a long ways toward preventing the ulcers. Many of us need a refresher course in that occasionally, as we may forget that things like caffeine can trigger attacks, or we accidentally get too much caffeine or other vasocontristing agents (sometimes even other prescribed medications), for example by trying a new iced tea drink, not realizing it is chock full of caffeine. And so on and so forth! See Raynaud's Prevention on our main site.


Warm Hugs,

 

Shelley Ensz

Founder and President

International Scleroderma Network (ISN)

Hotline and Donations: 1-800-564-7099

 

The most important thing in the world to know about scleroderma is sclero.org.

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SaraM,

 

The scleroderma center at John Hopkins has notices of trials and studies being done there. All of the doctors there are wonderful and I'm sure they can help.

 

Best,

 

alice

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Thanks so much to everyone for the warm welcome! I have been using the nitro paste with good success. I am trying to cut back my caffeine and really watch out for situations where I might injure my fingers. I haven't been getting flare ups as much over the summer, but every cut seems to turn into a major wound. The nitro paste seems to be helping to keep good color in my fingers and to keep blood there to help them heal. I just read the Spoons article, and I think I need to take the author's advice and SLOW down. I also need to learn to ask for help with tasks that will put stress on my fingers. It's frustrating when you are used to being independent!

Warm thoughts to all,

Sara

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How we hate asking for help! Since being ill I have been saying "I can do it" when needing help and can't tell you how many times Ma has heard those words. Well now she's broken her hip and on crutches guess what she keep saying instead of asking for help..."I can do it!"


Amanda Thorpe

ISN Sclero Forums Senior Support Specialist

ISN Video Presentations Manager

ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist

International Scleroderma Network (ISN)

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I use revatio, 20 mg 3 times a day. It's the same drug as viagara, a vasodilator. Approved for PAH, and it took a fight to get it for me, but my doctor is awesome. As to the nitro paste, be careful NOT to put it ON THE ULCER ITSELF!!! Put a tiny bit around the base of the finger, nearest to the hand and cover with a band aid. The headaches will subside, but do it at bedtime at first. Good luck.

Karen

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Hi,

 

I just posted this in another area. For me I was too sensitive to the calcium channel blockers, my blood pressure would drop so low I would faint. I couldn't take it. Nitrobid worked a little bit but not much. The best thing for me was prozac/fluoxitine, it helped the best with almost no side affects.

 

I know how you feel, I am also your age, and work with computers all day long, it can be so awful to have them.

 

Also I make sure I stay warm during the day. Always have a blanket and a heating pad at work. Using Aspercreme lotion also helps me a lot. I just rub it on my hands when I start getting a chill.

 

For the most part my ulcers have healed. They aren't as painful and open sores like they used to be. But still crust over with a scab that falls off, but that is better than having such sensitivity. Another point also, is that I put triple antibiotic creme on my open sores to make sure that they are not infected and moisturized. And I always use moisturizing lotion after washing my hands. (Follow your doctor's advice on this, of course, even if it is different than what I do.)

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