Jump to content


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


Photo

Sclerodactyly

sclerodactyly skin fibrosis scleroderma hands

  • Please log in to reply
10 replies to this topic

#1 marsha

marsha

    Silver Member

  • Members
  • PipPipPipPip
  • 157 posts
  • Location:Maine

Posted 25 June 2013 - 02:14 PM

Hi all!!

 

I hope summer is finding everyone nice and warm.  

 

I have a question, my sclerodactyly is so bad I can't even get my shoes on my feet and close my hands.   Does anyone have any relief ideas that help them??

 

I go see my rheumatologist Thursday but he never has any ideas for me.

 

Thanks,

 

Marsha



#2 Shelley Ensz

Shelley Ensz

    Root Administrator

  • ISN Root Admin
  • PipPipPipPipPipPipPipPipPipPipPipPip
  • 3,276 posts
  • Location:Minnesota

Posted 25 June 2013 - 03:53 PM

Hi Marsha,

 

I'm sorry your hands and feet are so badly affected by scleroderma. UVA1 phototherapy might be something you'd like to try.  The treatments are noninvasive, very much like a vertical tanning booth and they only take a few seconds per treatment.

 

UVA1 is generally the first treatment they recommend for morphea now, and in the study linked above, they included 3 people with systemic scleroderma, and it entirely reversed all the skin involvement in 1 person.

 

:emoticons-group-hug:


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.

#3 miocean

miocean

    Senior Gold Member

  • Members
  • PipPipPipPipPipPipPipPip
  • 925 posts
  • Location:NJ

Posted 25 June 2013 - 06:57 PM

Marsha,

I am so sorry about your hands and feet. Are your feet starting to curl as well? My feet did not curl but I have had bent toes since childhood and have trouble finding comfortable shoes. My mother-in-law had limited scleroderma and at the end of her life her feet were curled. 

 

I went to Occupational Therapy for five years. For the first couple of years it was two times a week. Then I would stop for a while, and go back, in order to qualify for insurance. My fingers were clawed in and I couldn't make a fist. I couldn't hold a pen to write my name and using a keyboard was difficult. At therapy I would start out with a paraffin bath and heating pads, then have hand exercises to do with hand putty, other exercises with hand weights and machines, and then my therapist would gently (although it did hurt) stretch my hands. Today my fingers don't straighten and are slightly curved but I can make a pretty good fist and hold things. My skin also softened, making it easier to manipulate my entire body.

 

Can your get a prescription for Occupational Therapy? You can buy a paraffin bath but I didn't like the one I had at home. I took up a lot of space and had to stay on and heated all the time to make the wax stay melted. Do you do any hand exercises? 

 

I was fortunate to have a great hand therapist. I really feel for you.

 

miocean


ISN Artist

#4 Joelf

Joelf

    Star Ruby Member

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

Posted 25 June 2013 - 11:15 PM

Hi Marsha,

 

I'm very sorry to hear that you're suffering so badly with Sclerodactyly. Like Miocean, I have a wax bath, which I did use occasionally, but to be honest, it was rather a palaver and thankfully my hands are not badly affected (I only have shiny skin on the tips of my fingers.) My fingers tend to be a little bit tight and my wrists very painful, but I do try to do some hand and finger exercises to keep them moving (although I'm probably not as diligent about doing them as I should be! ;) )

 

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 Shelley Ensz

Shelley Ensz

    Root Administrator

  • ISN Root Admin
  • PipPipPipPipPipPipPipPipPipPipPipPip
  • 3,276 posts
  • Location:Minnesota

Posted 26 June 2013 - 09:26 AM

Hi Marsha,

 

I also had occupational therapy for my hands for about a year.  They made splints for me for day and night, so that if my hands froze they would do so in the most usable position. I also did hot wax treatments to loosen up my hands for hand exercises, plus splints for various fingers that were twisting.

 

:emoticons-group-hug:


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.

#6 Amanda Thorpe

Amanda Thorpe

    Platinum Plus Member

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

Posted 26 June 2013 - 11:42 AM

Hello Marsha

 

I said to my husband recently that my sclerodactyly is worse, my fingers are more curled than when I made the video about it. There are no hospitals anywhere near me that provide UVA-1 phototherapy so that's not an option for me unfortunately, is it possible for you as I assume there are more centres in the US that do it?

 

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)

#7 marsha

marsha

    Silver Member

  • Topic Starter
  • Members
  • PipPipPipPip
  • 157 posts
  • Location:Maine

Posted 26 June 2013 - 04:53 PM

Thank you all. My right hand fingers seem to be affected more than the left. They are not curled but they are bent and it is hard to close them or straighten them.

 

Is the UVA1 therapy for sclerodactyly?? And is it just like going to a tanning bed? My skin on my hands is VERY shiny. I try to exercise my hands every day by stretching them.  I was told in Boston that there is really nothing that can help and that the symptoms are so much worse than the disease. I think for the last two years the sclerodactyly has been the worse part of my illness, well that and the extreme fatigue. I have come to live with the red face and red spots. The huge ankles and hands are a bit harder too. I will talk to everyone soon.

 

Thanks again,

 

Marsha



#8 Amanda Thorpe

Amanda Thorpe

    Platinum Plus Member

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

Posted 30 June 2013 - 08:14 AM

Yeah, my right hand is worse than my left as well! I am right handed so that hand gets used more that the left, makes no sense to me as I would have thought it would be the other way round?!

 

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 Shelley Ensz

Shelley Ensz

    Root Administrator

  • ISN Root Admin
  • PipPipPipPipPipPipPipPipPipPipPipPip
  • 3,276 posts
  • Location:Minnesota

Posted 01 July 2013 - 01:54 PM

Hi Marsha,

 

Mixed results have been reported so far for UVA1 for sclerodactyly but one study of 5 reported improvement for all systemic scleroderma patients, with both acral (hand/feet) and proximal (closer to the center of the body) scleroderma. So far, more extensive testing has been done with morphea scleroderma, where about 88% experienced improvement in their skin lesions, so now larger scale clinical trials are underway.

 

It is like a tanning booth, except it is upright. You simply stand in the unit, with special UVA lights on all sides, wearing protection for your eyes and face. The actual time in the booth is very brief, less than a minute, but they will generally tell you the treatments take 20 minutes because of the time it takes to remove most of your clothing and then get dressed again.

 

You don't expose only the parts with skin involvement, but rather the whole body, because the effects of the light are not just on the skin. As I understand it, they believe some of the beneficial effects are because the light causes changes in the bloodstream and thus the immune system.

 

The treatments are entirely painless; no drugs, no surgery! The main side effect is a gradual tanning. For the first visit they just do a small test with little spots on your arm at different settings to see what the best level is for you to begin at.

 

UVA1 is also being used for other diseases, such as psoriasis and lupus. The main problem right now is that there aren't many dermatology centers that have UVA1 equipment.

 

Since the usual treatment program is 2 or more times per week, it really helps to have an insurance plan that doesn't have co-pays for specialist office visits.

 

Apparently they have UVA1 units that can be purchased for home use, a frequently cited cost is $1100, which may or may not be covered by insurance. If you consider that route, it would be extremely important to consult a doctor about it, to make sure the unit type and size would be sufficient, that dosage would be carefully monitored, and that you have a prescription for dosage as well as regular follow-ups.

 

:emoticons-group-hug:


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.

#10 marsha

marsha

    Silver Member

  • Topic Starter
  • Members
  • PipPipPipPip
  • 157 posts
  • Location:Maine

Posted 02 July 2013 - 10:25 AM

I saw the rheumatologist and he thinks I have Sjogren's as an overlap.. YAY!! I have been having issues with extreme thirst and dryness. The sclero doctor in Boston believed I had it. So more testing and a trip to the gastro doctor seeing I've been having some belly and bowel issues for the last 6-months.. WONDERFUL... I did ask the rheumatologist about the UV light treatments and he has never heard of it. I will have to see what the doctor in Boston thinks.. Hope everyone has a great holiday weekend!!

 

Marsha



#11 judyt

judyt

    Gold Member

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

Posted 02 July 2013 - 01:32 PM

Hi All,

 

At least you have UVA1 therapy available on the same land mass as where you live!!  I suspect there is at least one centre in Australia but when you are tired, sick and unable to work to earn the money it becomes a big hurdle.   Thank goodness I don't have skin involvement but there are plenty of folks here who do.

 

Best of luck Marsha.

 

Judyt