Jump to content


Did you know that exercise increases inflammation in systemic sclerosis?


Photo

Ulcers over the joints


  • Please log in to reply
9 replies to this topic

#1 ashu

ashu

    Bronze Member

  • Members
  • PipPip
  • 25 posts

Posted 26 January 2009 - 01:54 AM

Hello.

My daughter who has scleroderma since 4 years has painful ulcers over the joints, which don't heal for months together. Because of that she has difficulty in walking and great difficulty in doing physiotherapy. Can anybody help me? Is there any role for cyclophosphamide infusion in healing the ulcer?

m/o ashu



#2 Jeannie McClelland

Jeannie McClelland

    Senior Gold Member

  • ISN Support Specialists
  • PipPipPipPipPipPipPipPipPipPip
  • 1,706 posts
  • Location:in the Rocky Mountains of the USA

Posted 26 January 2009 - 05:16 AM

Hi Ashu,

I'm sorry your daughter is having such problems. How old is she?

You don't say which joints are affected by the ulcers nor how they are treating them. Most treatment seems to involve treating any infection at the site of the ulcer, protecting the area from contamination and any further damage. As you already know, ulcers can take a long time to heal.

I'm not a doctor, but I have never read of Cytoxan in any form being used to treat ulcers. If you click on the highlighted word, it will take you to the page we have on it.

Cytoxan was developed to treat cancer, but has since been used as an extremely powerful immune system suppressant. It has many potentially harmful side effects. Has your daughter's doctor suggested using this?

Hope this information helps.

Best wishes to you and to her,
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

#3 lizzie

lizzie

    Senior Silver Member

  • Members
  • PipPipPipPipPip
  • 497 posts
  • Location: UK

Posted 26 January 2009 - 06:34 AM

Hi ashu, I'm sorry to hear that your daughter has developed ulcers, it must be very distressing for both you and her. The most effective treatment for healing ulcers, as far as I am aware, is Iloprost (a prostocyclin) delivered intravenously. I don't know whether this would be available to your daughter. It is quite commonly used in the UK for the prevention and treatment of ulcers.

Lizzie

#4 bookworm

bookworm

    Silver Member

  • Members
  • PipPipPipPip
  • 292 posts
  • Location:Texas

Posted 26 January 2009 - 08:59 PM

Since my doctor put me on Viagra and later Cialis, I haven't had any more ulcers. I had one really severe one that took about a year to heal. After that, the next one I started getting caused my doctor to try the Viagra and it cleared that new ulcer right up. I haven't had another one since then and that's bee several years ago. I believe this treatment is described on this site.
Good luck

Mary in Texas

#5 Eos

Eos

    Senior Bronze Member

  • Members
  • PipPipPip
  • 60 posts
  • Location:Western NY

Posted 27 January 2009 - 03:51 PM

Viagra? Isn't that a male potency drug? Am I missing something??

#6 Shelley Ensz

Shelley Ensz

    Root Administrator

  • ISN Root Admin
  • PipPipPipPipPipPipPipPipPipPipPipPip
  • 3,275 posts
  • Location:Minnesota

Posted 27 January 2009 - 04:06 PM

Hi Eos,

You are correct, Viagra is an impotency drug. However, it achieves this by stimulating a great improvement in circulation, so it has been found very useful for treating scleroderma digital ulcers. So it's one of the very few scleroderma treatments that is more often welcomed than shunned. ;)
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.

#7 Flower

Flower

    Newbie

  • Members
  • Pip
  • 4 posts
  • Location:wauzeka. wi, 53826

Posted 28 January 2009 - 06:38 AM

Hi,

I to suffer with finger tip ulcers and have tried all the meds including viagra. I choose to discontinue the viagra and I believe it was what caused me to have 'break through bleeding'...I am post menopausal. What about Gabapentin? Have you given that a try? I had to take mine as a compound cream since I did not care to take it orally.

Hope this helps.
Hugs,
Flower

#8 debonair susie

debonair susie

    Platinum Member

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

Posted 28 January 2009 - 11:07 AM

It IS true about the benefits of Viagra, just as Shelley named.

As a matter of fact, my dr wanted to prescribe it for my raynauds issues (I do not suffer from finger ulcers, thankfully). However, I opted not to take it and am taking another medication that works well for me.
Special Hugs,

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

#9 Kiwi

Kiwi

    Senior Bronze Member

  • Members
  • PipPipPip
  • 57 posts
  • Location:Whangamata, New Zealand

Posted 29 January 2009 - 09:43 PM

I have had ulcers for years and it's not since giving up smoking and taking Cialis they've mostly cleared up. Unfortunately it's expensive in NZ!!
Kiwi

Diagnosed 2006 - Diffuse Scleroderma
Skin and lung involvement

#10 scragporter

scragporter

    Senior Bronze Member

  • Members
  • PipPipPip
  • 48 posts
  • Location:phoenix Arizona

Posted 30 January 2009 - 08:23 AM

Sorry to hear about your daughters ulcers, vasodilators like norvasc helped my Raynauds, also viagra can help with circulation and nitro paste applied topically around the ulcers can aid in helping circulation to the affected areas. Pulmonary hypertensive meds like Bosantan and Leitaris have been shown to aid not only pulmonary hypertension but aid secondary digital ulceration healing. I was on Leitaris for my pulmonary hypertension and with the other meds my ulcers improved. I also had IV cyclophosphamide over six months once monthly it somewhat helped soften my skin and stopped my lungs from deteriorating for awhile.
Sharon