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Trish: Spouse of a Diffuse Scleroderma Patient

We had never heard of the disease before, but boy do we know a lot now thanks to this site.

My husband was diagnosed with limited scleroderma in June of 2000. We had never heard of the disease before, but we know a lot now, thanks to sclero.org.

It all started when his hands began to swell, and then painful ulcers began to form on the ends of his fingers. His skin is hard and thick. It has started around his eyes, and the back of his neck is itchy and burns. He also has arthritis, which bothers him a lot. The cold drives him crazy, and it takes quite awhile to warm up again.

Lately, he has been having problems breathing and soreness in the chest. He had a breathing test done a month and a half ago, and it was all right. He is now going for a CT scan, dye tests and a swallowing test for the esophagus. We will be going to Baltimore in September to see Dr. Wigley. I will update more on my husband's condition when we return from Baltimore.

~ Update ~

My husband was diagnosed with diffuse scleroderma this time, although right now the doctor says there is no internal involvement so far. The scope of the esophagus showed some abnormalities, but there is no heartburn yet and no difficulty swallowing. The arthritis is bothering him a lot, his appetite is not very good, and he has lost fifteen pounds since he has been diagnosed.

Dr. Wigley is the best doctor that we have spoken to so far. He explained this disease in a very understanding way and took a lot of time talking with us. He mentioned a study test that is being done on the lungs that will determine how soon or how long it will be before internal involvement occurs. We live in Canada, so it is quite a distance to keep in contact with Dr. Wigley, and he was so kind as to give me his email address. We will keep him updated with my husband's condition through email.

From what I have read about diffuse, it is just a matter of time and internal involvement will occur, so this was very scary to hear. Does anyone know how long it takes before it goes internally? What can I do to help my husband? I?m very worried about him, but I have to put up a good front, so he doesn?t get too upset. Lying in bed at night is my worst time; this is where I have my crying sessions. We have only been married one year, and I wonder how many more we will have, before this terrible disease takes him away from me.

~ Update - May 28, 2001 ~

Since my last update, my husband has had cataract surgery on both eyes. He was having heartburn, but it is under control with medication. He has lost a lot more weight. He will have a gastroscopy, which is an examination of the throat (esophagus), stomach, and part of the small intestine (duodenum). The cords in his arms keep him awake at night. They are very painful, because the skin is so tight and hard. His fingers are starting to curl quite badly, which makes it hard for him to do things, like brush his teeth, hold a bar of soap, put on shaving cream, peel vegetables, hold onto his pills, and pick small things off the floor.

He is now on Workers Compensation, because he was exposed to silica dust. He worked at painting and sandblasting for twenty years, and it is considered a work-related disease. There have been a lot of changes in my husband's health over the past year. I only wish I could take away some of the pain he endures.

~ Update 12-29-02 ~

There have been a lot of changes in my husband's condition since last year. The arthritis is a real problem now. His feet, hands, elbows, knees, ankles, shoulders and neck are constantly in pain. He has a lot of trouble walking, getting up and down from a sitting position, climbing stairs, bending over to pick up things, and reaching for items in the cupboard or fridge.

His fingers are curled to the point that he cannot open his hand wide or make a fist. The cold still bothers him a lot. He has difficulty sleeping at night as the pain never goes away.

He is on several medicines including penicillamine.*

He just started the penicillamine last week and the doctor said it could take up to three months before we would even know if it works. He has blood work and urine tests done weekly. His appetite has not been too good lately and diarrhea has been a problem. We are not sure if this is a side affect from the penicillamine.

The skin condition still bothers him a lot. I apply lotion on him daily. We are waiting word on doing some physical therapy. The doctor wants him to start right away, as his hands and joints are tightening up quite badly.

Webmaster's Note

Most unfortunately, in 1997, penicillamine was found to be of no benefit in the treatment of Systemic Scleroderma. Until then, penicillamine (aka Cuprimine, Depen, or d-penicillamine) was commonly used for Systemic Scleroderma, but a large multi-center clinical trial in the U.S. proved that there was no difference between high-dose and low-dose Penicillamine in the treatment of scleroderma.

A 1998 case report raised the possibility that penicillamine may be harmful in certain patients, and may even be associated with acceleration of the disease. However, some doctors believe pencillamine may still be of merit in certain subsets of scleroderma. See:Ineffective or Unproven Treatments for Scleroderma.

~Update 12-10-03~

My husband is now in the late stages of this disease. His doctor in Baltimore now wants to see him every three months.

Since my last update, my husband has been hospitalized, he was unable to eat and became malnourished. He had a feeding tube inserted in May and has gained a bit of weight back. Before he got sick he weighed one hundred and ninety-two pounds and when they inserted the feeding tube he was only one hundred and twenty-six pounds.

His hands are now crippled-up into fists. He has severe pain in his feet, and cannot eat a thing as he has no desire to eat. His mouth will only open to an inch wide.

He is on some pain medication that helps him a lot. He goes to physical therapy three days a week. He is extremely weak, and gets breathless with little exertion. He has contractures in his hands, forearm, wrist, elbows, shoulders, knees, and the ankle-foot area. He has severe gastroparesis and esophageal dysfunction.

~ Update 07-14-04 ~

We saw Dr.Wigley and Dr.Eggleston in Baltimore, Maryland, on June 28, 2004. Dr. Eggleston sees my husband in regard to his hands (which are closed into fists now), and he says that Dr. Spence, who is the Chief Plastic Hand surgeon of Johns Hopkins, can do surgery on his fingers and fuse them open. They will have to put pins in and maybe skin grafts because his skin is so tight. My husband would like to have this surgery done, and would like to know if anyone has ever had this operation.

My husband has been on the feeding tube since last year and in the last month he has been getting his appetite back. He tries to eat at least one meal a day. The doctor was really impressed with this.

His feet are in bad shape but the New Balance sneakers seem to be the footwear that fits him best.

The cold is still hard on him. It is July now and we are suppose to be well into our summer here in Canada, but it has been a terrible summer, very cold and wet.

I will keep you updated on my husband's condition and how his operation goes on his fingers. We do not have an appointment for that yet.

Thanks for taking time to read my story. I look forward to hearing from anyone who may have information on fusing fingers to an open position.

~ Update 03-13-05 ~

My husband had the surgery and his fingers are now fused into an open position. He will have the other hand done in June, at the Johns Hopkins Bayview Hospital.

A lot of changes are happening to his feet. His toes are all twisting every which way. It has been very cold here in Canada so you all know very well what that feels like.

I'll close for now and will keep you up-dated on his surgery in June.

~ Update 04-17-06 ~

My husband had the second surgery on his other hand but it was not as successful as the first. They tried to straighten the pointer finger first and after that healed they were going to fuse the rest of the fingers into an open position. This was quite uncomfortable for him and when the finger went back over into place again he chose not to go through the second surgery.

In February, he slipped and fell on ice in the yard. He broke his hip and three ribs. He had surgery the next day and was inserted with a rod and pins. The specialist is now sending him for a bone density test, which will be on the 28th of April.

While he was in the hospital they changed his formula for his tube feeding but that did not adjust well with him, so he is back to the Jevity with fiber.

His feet and knees are in bad shape and he is having lot of pain with them and they are twisting bad. The disability assessment that was done on him recommended that we put in an electric lift for him. They were here yesterday getting measurements to install it.

My husband is also involved in a scleroderma study that his specialist is doing. They call him every year and he just did the second one last week. The specialist wants to see him every six months now instead of once a year.

That is it for now. I will keep you in touch with my husband's condition.

To Contact the Author

Trish M.
[email protected]
Story posted 7-15-00.
Updated 9-24-00
Updated 5-28-01.
Update submitted 12-29-03
Story update posted 1-17-03
Webmaster's Note added by Shelley Ensz on 1-17-03.
Story edited V1 7-28-03
Story updated 12-16-03
Story update posted 7-14-04 SLE
Story update posted 03-14-05 SLE
Story update edited 04-17-06 JTD
Story update posted 04-18-06 SLE

Story Artist: Shelley Ensz
Story Editor: Judith Devlin
LINKS
Causes of Scleroderma
Canadian Scleroderma Support
Difficulty Swallowing
Diffuse Scleroderma
Digital Ulcers
Esophagus Involvement
Gastroparesis
Heartburn
Lung Involvement
Penicillamine
Sclerodactyly (curled up hands)
Skin Fibrosis

ISN Story Editor: Judith Thompson Devlin

Photo of JudithJudith Thompson Devlin is the ISN Story Editor for this story. She is also lead editor of the ISN's wonderful Voices of Scleroderma book series!

This Story is Featured in Voices of Scleroderma Volume 1

Voices of Scleroderma Volume 1 The story on this page is featured in the top-notch Voices of Scleroderma Volume 1 which features articles by top scleroderma experts, including Dr. Joseph Korn, as well as 100 true patient and caregiver stories from this website! The book delivers excellent information and support for scleroderma patients and caregivers. It's a great way to inform family and friends about scleroderma, too!

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