Jump to content


Congrats to Margaret, Platinum Member with 1,000 posts and 10 Years of Forums Membership!


Photo

skin on hands breaking down


  • Please log in to reply
16 replies to this topic

#1 fragiledancer2

fragiledancer2

    Senior Bronze Member

  • Members
  • PipPipPip
  • 44 posts

Posted 23 November 2011 - 04:51 PM

Hi again-more issues! Now that it is cold my ulcers have begun and 2 have necrotic skin-I just don't heal anymore-greenish skin growing on ulcers, etc.. My rheumatologist is sending me for a MRA of the upper extremities. I do have mild aortic stenosis due to a bicuspid and mild LVD which may effect my circulation. I keep my hands and core warm with warmers and try not to traumatize them-but I have to use my hands. I keep them moisturized. I started on Revatio a week ago-not sure how long it takes to work. My rheumatologist also talked about IV Remodulin as a last resort,He added a baby aspirin as well. I will make an appt with a hand surgeon who could do Botox. Putting antibiotic cream and covering them is the kiss of death. I've had ulcers for 10 years but never like this.. HELP!

#2 miocean

miocean

    Senior Gold Member

  • Members
  • PipPipPipPipPipPipPipPip
  • 925 posts
  • Location:NJ

Posted 23 November 2011 - 09:52 PM

Fragile Dancer,
I can't imagine what you are going through. :emoticon-crying-kleenex: I have so much trouble with my hands and am thankful I don't have ulcers. Confidentially, they are one of my biggest fears as my Raynaud's worsens. Here is the ISN medical page on digital ulcer treatment. Please note that you should consult your doctor first.

I would like to point your attention to Manaku Honey or Medihoney. It has antibiotic properties. You can find posts about it in a search on the forum.

Here are my personal experiences:
I got ulcers on my buttocks from sitting too long on a bedpan trying to be the good patient :emoticons-yes: I called my doctor and he told me to put petroleum jelly on and go to the dermatologist. My nail tech told me to get Manaku Honey so I stopped by a health food store (regular honey in a jar marked +5) and bought some to put on them and by the time I saw the doctor the next day they were gone. They were small but it worked for me. I later learned it comes in different strengths and +5 is not very strong.

A man at my dialysis/transplant support group is diabetic and has ulcers on his foot so badly he has to wear a special boot sometimes. He started using Medihoney and his came in a sheet that he would cut and put over his ulcers. He claims it works better than anything else but is expensive (?) and hard to find. He hasn't worn the boot for a couple of months now.

:emoticons-i-care:
miocean
ISN Artist

#3 Amanda Thorpe

Amanda Thorpe

    Platinum Plus Member

  • ISN Senior Support Specialist
  • PipPipPipPipPipPipPipPipPipPipPip
  • 2,927 posts
  • Location:U.K.

Posted 24 November 2011 - 06:15 PM

Hello Fragiledancer

Hmmm ulcers, fingers no, feet and legs yes. I am having no success at all in containing mine in fact they are just spreading and previously healed areas are breaking open again. However, I don't have greenish skin growing over them so I guess it could always be worse.

I am sorry I can't come up with anything to help you and really came in to sympathise with you. It is so frustrating when you just can't seem to get rid of them. I am being referred to a dermatologist so that may help, it'll be another addition to my 'ologist score if nothing else!

Miocean, I am thinking hard about this manuka honey. Do you know if you cover the ulcers after application because mine are constantly bandaged up and only changed twice a week?

At this point I'd consider almost anything but obviously I will discuss the manuka honey with the nurses/doctor.

Take care.
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)

#4 Joelf

Joelf

    Star Ruby Member

  • ISN Root Admin
  • PipPipPipPipPipPipPipPipPipPipPipPipPip
  • 4,610 posts
  • Location:West Sussex

Posted 25 November 2011 - 12:55 AM

Hi Fragiledancer,

I'm really sorry to hear about the pain and discomfort you're suffering from your ulcers; they must be excruciating! Although I do have Raynaud's and pain in my wrists and fingers I've fortunately never had any ulcers (yet!!)

I would agree with Miocean and Amanda and perhaps you could discuss the use of Manuka Honey with your doctor?

Kind regards,

Jo Frowde
ISN Assistant Webmaster

SD World Webmaster
ISN Sclero Forums Manager
ISN News Manager

ISN Hotline Support Specialist
ISN Chat Host
International Scleroderma Network (ISN)


#5 barefut

barefut

    Platinum Member

  • Bloggers
  • PipPipPipPipPipPipPipPipPipPip
  • 1,159 posts
  • Location:NW Washington

Posted 25 November 2011 - 09:42 AM

Oh I am so sorry you are having to deal with this! There is no way around NOT using our hands! I remember when my hands were giving me fits though I have only had to deal with one ulcer and it wasn't that bad but did take months to heal. Since I've been taking Felodipine things have been much better. I think you will get much relief from the Revatio. You will be in my thoughts!

#6 debonair susie

debonair susie

    Platinum Member

  • ISN Support Specialists
  • PipPipPipPipPipPipPipPipPipPip
  • 1,638 posts
  • Location:(United States)

Posted 25 November 2011 - 11:36 AM

Oh fragiledancer and Amanda! I am so sorry you are having the ulcer issues you deal with, EACH of you :crying:
fragiledancer, I sure do hope that your doctor is keeping an "eagle eye" on what you described, I REALLY DO!
By chance, is there a doctor in your area who deals with digital ulcers and such characteristics? If so, I'm inclined
to believe that this is something that needs special attention from one who deals with these very issues; Because
you've dealt with ulcers over the many years you have and yet this is the first you've had such an occurance, I
would be so inclined to step up care management in order to avoid further complications.

Please keep us posted on this front? In the meantime, I'm sending you Soft :emoticon-hug: s to help comfort you.
Special Hugs,

Susie Kraft
ISN Support Specialist
ISN Chat Host
International Scleroderma Network (ISN)

#7 fragiledancer2

fragiledancer2

    Senior Bronze Member

  • Topic Starter
  • Members
  • PipPipPip
  • 44 posts

Posted 26 November 2011 - 05:26 PM

Thanks guys -

Tried the honey but anything spread and covered is the kiss of death - but I know it does help for some.

#8 Amanda Thorpe

Amanda Thorpe

    Platinum Plus Member

  • ISN Senior Support Specialist
  • PipPipPipPipPipPipPipPipPipPipPip
  • 2,927 posts
  • Location:U.K.

Posted 27 November 2011 - 10:03 AM

Hello Fragiledancer

I had heard that, finger ulcers do better dry and uncovered. How strange that those on the feet and legs get covered, I wonder why?

Take care.
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)

#9 Joelf

Joelf

    Star Ruby Member

  • ISN Root Admin
  • PipPipPipPipPipPipPipPipPipPipPipPipPip
  • 4,610 posts
  • Location:West Sussex

Posted 27 November 2011 - 10:54 AM

Hi Fragiledancer and Amanda,

Interestingly, my mother had a similar conversation with one of the practice nurses at her doctor's surgery. She recently fell at home and cut her leg very badly (the room looked a little like a scene from "Midsomer Murders" as she unfortunately got a lot of blood all over the carpet! :P ) and the nurse advocated keeping the wound covered as she said that apparently it would heal better if it wasn't allowed to dry up too quickly and form a hard crust over the wound. My mother was extremely sceptical about this, believing that it was better to "let the air get to it" but I must admit that considering what a nasty wound it was, it's healed very well through being covered up.

That still doesn't explain why that would benefit leg injuries, as opposed to finger injuries, though? :emoticon-dont-know:

Kind regards,

Jo Frowde
ISN Assistant Webmaster

SD World Webmaster
ISN Sclero Forums Manager
ISN News Manager

ISN Hotline Support Specialist
ISN Chat Host
International Scleroderma Network (ISN)


#10 debonair susie

debonair susie

    Platinum Member

  • ISN Support Specialists
  • PipPipPipPipPipPipPipPipPipPip
  • 1,638 posts
  • Location:(United States)

Posted 27 November 2011 - 11:30 AM

I feel for anyone who must try to find the best treatment for ulcers; My heart goes out to you.

Jo, I am so sorry that your mum had a nasty fall and incurred such an injury :crying: I am sending
her an abundance of :emoticon-hug: s and some to You as well (because you are my Favorite Twin)!
However, it is MY understanding, where deep cuts are involved, that they heal from the inside out,
so covering them allows the best method for healing, for which I am very happy your mum's has been doing :emoticons-line-dance: .
The natures of wounds, such as finger ulcers vs leg and foot ulcers is perplexing to me, which, obviously is the reason
I am not a doctor :emoticon-dont-know: !
Special Hugs,

Susie Kraft
ISN Support Specialist
ISN Chat Host
International Scleroderma Network (ISN)

#11 judyt

judyt

    Gold Member

  • ISN Support Specialists
  • PipPipPipPipPipPip
  • 641 posts
  • Location:Auckland, New Zealand

Posted 27 November 2011 - 03:56 PM

,Hi People,

While we are talking about wound and ulcer healing, I thought I would contribute my tuppence worth. When I have an ulcer on my leg, which is quite often I am afraid, the advice I get is to keep it dry and not to let it dry out. All that seems contradictory I know but this is how I understand it.

Keeping it dry means not letting the dressing get wet and therefore making the skin sodden and offering an invitation for bacteria to have a picnic.

Keeping it moist is using a medicated lubricant on the actual ulcer, or a dressing which encourages the formation of lubrication by the wound itself. I have been given another cellulose dressing which turns into a gel. Sometimes the secret seems to be to keep it covered for a week, sometimes keeping a waterproof dressing on it and changing it every 3 days, sometimes a breathable dressing which keeps water out.

There seem to be as many ideas about what is the best treatment as there are people being treated, and the most recent treatment I have had included low dose antibiotic for about 6 weeks and a breathable dressing changed every second day. The hardest thing of all is to wash yourself while keeping it dry. I use a plastic bag held on with a rubber band or 'gladwrap' wound round and round. The shower has to be quick or the water will get in and as well it is helpful to put your foot on a stool out of the main stream of water. Goodness knows what I will do if I ever get one on each leg.

Don't even ask me about finger ulcers :( I can't begin to imagine how one is supposed to carry on with life and keep your hands dry and clean. Fortunately I only ever had one finger at a time start to ulcerate before I got it under control. Now my raynauds seems to have decamped and I don't seem to get any attacks at all any more.

Best wishes to you all

JudyT

#12 rubydoo

rubydoo

    Senior Bronze Member

  • Members
  • PipPipPip
  • 41 posts
  • Location:sheffield,uk

Posted 28 November 2011 - 05:34 AM

Dear Fragiledancer,

I can totally sympathise with you about the digital ulcers as I suffered for 2 years with very troublesome ulcers on 2 of my fingers. They also got to the point where they were always covered with greenish skin. Now, however,for the first time in 2 years my ulcers are almost completely healed over and the pain is minimal. I'm hoping too that my Raynaud's is deciding to decamp and move on like JudyT's. It has not gone yet but doesn't visit that often anymore and the attacks are relatively mild compared to last winter. My treatment started with Nifedipine 20mg x3 daily but I found this hard to tolerate and it wasn't improving the situation anyway so it was reduced and I now take 20mg in the morning and 10mg in the evening. I have had 5 Iloprost infusions over the last 21 months which initially didn't seem to improve things. My Rheumatologist also started me on Fluoxetine 20mg daily in February of this year as I was really suffering with the ulcers at this point - this has vasodilation effects and has been shown to work for some people with Raynaud's. Whatever, whether it's just my time for the Raynaud's to improve of it's own will or whether it's the current combination drugs I am taking it's impossible to say. I am not stopping the treatment yet anyway to find out as I am making the most of not feeling as though I live in a fridge. Anyway, I guess what I am saying is there is always hope that you can find something that works for you 'cos I never thought I would. Really hope you find some relief soon. By the way I worked for years as a nurse caring for very frail elderly patients. When all else failed on their ulcerated very fragile skin we used honey dressings quite successfully in most cases to heal them.
Take care and warmest wishes,

Helen

#13 Amanda Thorpe

Amanda Thorpe

    Platinum Plus Member

  • ISN Senior Support Specialist
  • PipPipPipPipPipPipPipPipPipPipPip
  • 2,927 posts
  • Location:U.K.

Posted 28 November 2011 - 01:20 PM

Hello Judyt

You can buy coverings from mobility shops, I have two of them. They are designed to cover casts and come in two sizes, half or full leg (or arm) and I use mine to enable me to have a bath as I can't stand long enough or securely to shower. They aren't cheap thought and thankfully a friend lent me one of the two that I have. I tried plastic bags secured by elastic bands but they leaked.

Take care.
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)

#14 KayTee

KayTee

    Senior Bronze Member

  • Members
  • PipPipPip
  • 84 posts
  • Location:Northern California

Posted 28 November 2011 - 05:43 PM

Thanks for all the info in these post since I'm having trouble with a finger ulcer not healing. My dermatologist gave me Nitroglycerin ointment which seems to help but not quite heal. Has anyone else some experience with this?

A doctor at UCSF who I went to see for lung issues told me to try Viagra since it helps with circulation.

Again I'd love to know any advice/issues with this.

Gentle and soft waves to all.

Thanks.
Kay Tee

#15 miocean

miocean

    Senior Gold Member

  • Members
  • PipPipPipPipPipPipPipPip
  • 925 posts
  • Location:NJ

Posted 28 November 2011 - 09:46 PM

Hi Kay Tee,
I am going to let you in on a BIG secret.....

:lol: :lol: :lol: But.......you will have to read my post on How to do a search on the ISN website! :lol: :lol: :lol:


miocean
ISN Artist

#16 Joelf

Joelf

    Star Ruby Member

  • ISN Root Admin
  • PipPipPipPipPipPipPipPipPipPipPipPipPip
  • 4,610 posts
  • Location:West Sussex

Posted 29 November 2011 - 09:06 AM

Hi KayTee,

Sorry to hear you're suffering with finger ulcers; they must be so painful!

I've included links to Nitroglycerine cream and also a very useful thread with lots of information about the use of Nitroglycerine ointment and Viagra which I do hope will be helpful and interesting to you.

Kind regards,

Jo Frowde
ISN Assistant Webmaster

SD World Webmaster
ISN Sclero Forums Manager
ISN News Manager

ISN Hotline Support Specialist
ISN Chat Host
International Scleroderma Network (ISN)


#17 KayTee

KayTee

    Senior Bronze Member

  • Members
  • PipPipPip
  • 84 posts
  • Location:Northern California

Posted 06 December 2011 - 08:37 PM

Thanks micoean and Joelf for your information. After reading all the info I could (I had to stop after a while - can get scary) I think I'll ask my dermatologist about adding Viagra. The ulcer is very very slowly healing with the nitrocream but it seems like it could easily go backwards at any time. Thanks for being there.
Kay Tee