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Frequently Asked Questions

We are happy to try and answer any questions you may have about sceroderma and can respond to these personally. We will also add your question with the answer to this page to assist other visitors to the site and your confidentiality will be maintained. Email your question to info@sclerodermasociety.co.uk.

Scleroderma and other diseases
Does scleroderma take the back seat when some other disease comes along?
Scleroderma is a chronic illness with some symptoms that are often persistent, but others declare themselves later on depending on the organ involved. Within this framework symptoms often fluctuate with time even with a chronic illness. If one is unfortunate to develop another unrelated illness this may take priority as far as the symptoms felt at that time but usually will not affect the natural progress of a disease like scleroderma. We would never take the issue of scleroderma as a back seat disease!
Scleroderma and ageing
Does scleroderma cause the ageing process?
No we are all undergoing the ageing process. If you mean by ageing the normal aches and pains associated with getting older we know that there is an increased incidence of musculo-skeletal problems associated with systemic sclerosis and again you would be advised to seek medical opinion in case the symptoms you are experiencing are due to another medical problem which requires diagnosis and appropriate treatment.
Scleroderma and bloating
I experience constant bloatedness, which I have been trying to manage without success. I have been told that this is caused by one of my medications (Lansoprozone) for acid control which increases intestinal bacteria, thereby causing bloating. I noticed that when I stop taking Lansoprozone for a couple of days the bloating is less but I experienced severe acid reflux. How can I eliminate the bloating without suffering the reflux?
Bloating and uncomfortable feelings of abdominal fullness and pain after eating are common in scleroderma (Systemic Sclerosis). Reasons include slowing of emptying of the stomach and also a tendency for bacteria to overgrow and cause extreme wind in the bowel.

Lamoprazole is very effective in treating heartburn in scleroderma by switching off stomach acid. Unfortunately this removes the natural anti bacterial effect of the acid. Antibiotics can kill the bacteria. You should discuss with your doctor whether this is something that might help you. A specific breath test can help confirm bacterial overgrowth.
Iloprost and CGRP
Why is Iloprost used as a first choice drug rather than CGRP(Calcitonin gene related peptide)? Have there been any studies/trials on CGRP in scleroderma patients?
There is a good theoretical basis for using CGRP in patients with severe Raynauds and where the levels of natural CGRP are low in the blood vessels - based on research studies. However there are no major trials. CGRP is used for patients who find Iloprost hard to tolerate at effective doses or due to side effects, or when it is ineffective. Both treatments are given by intravenous infusion. Iloprost has been shown to be very helpful in Raynaud's and is probably more powerful than CGRP and is our first choice drug.
Morphea Scleroderma, Methotrexate and Steroids
I have just found out that my ten year old daughter has Morphea Scleroderma. It started out as a quarter size white lesion on her leg and within the last three years it has spread down to her knee and up to her private parts. We live in the States and I just wanted to know how other countries feel about Methotrexate and Steroids? Western Medicine wants to give her an IV three times a month for three months. I'm really scared because I'm an Eastern Medicine believer. Any help you could give me I would surely appreciate.
The first thing to say is that every case is different and has to be individually assessed. Because localised scleroderma or morphoea is an uncommon disease there are no randomised controlled trials in the literature.
Most centres in the West, and particularly in North America and at Great Ormond Street in England, would advocate intravenous methylprednisolone and methotrexate as the standard treatment for this condition and there are many anecdotal reports to support this. If there are signs of progression of a lesion on the skin, and the best way of assessing this is usually relying on the patient's description or parent's observation. We would recommend active treatment in this way, increasing the dose of methotrexate until control of the disease is reached or until the patient becomes intolerant of methotrexate. Often conversion from oral to subcutaneous injections helps with the troublesome gastrointestinal side effects. We have also had success with oral cyclosporin, oral or topical mycophenolate mofetil and topical tacrolimus ointment as alternatives.
ENA Blood test and lupus antibodies
My Father had a very aggressive form of systemic sclerosis and I recently had an ENA Blood test which proved positive for lupus antibodies. I have since had further blood and organ tests which are negative. Could you comment please?
It is common to have a connective tissue antibody in a close relative of a patient with scleroderma or any of the other connective tissue conditions. It reflects "background" susceptibility but is extremely unlikely to develop into disease as multiple other triggers are needed.
What is the likely outcome and expected survival with systemic sclerosis?
This largely depends on which organs are involved. In the past patients died more often from renal complications but we are much better able to treat patients with this complication nowadays. Renal crisis occurs more often in patients with diffuse cutaneous systemic sclerosis in the first two years after presentation, so by educating patients to report the early warning signs we can save their kidneys by initiating early treatment.
Pulmonary hypertension which occurs in isolation in some patients with limited cutaneous systemic sclerosis carries a poor prognosis, but again we have much better treatments for this and by monitoring our patients with yearly lung function and echocardiogram we are able to treat them early.

For the vast majority of patients the outlook is good. So that we can usually be reassuring and treat them for their circulation problems and bowel symptoms with well tried treatments.
Plaques in Morphoea
Are plaques in Morphoea a sign of inflammation and increased blood flow? Is there a difference between new and old plaques?
New plaques of morphoea generally tend to show increased blood flow as part of the inflammatory response so they look red and can be itchy and uncomfortable. Thermography, which is used to detect temperature changes related to increase blood flow, can be useful to monitor these lesions as far as their activity is concerned. Older more mature lesions tend to look silver or brown and may fade altogether.
I have very painful feet - why and what can be done?
Pain is due to a combination of factors. There is often loss of connective tissue or the soft padding on the sole of the feet which tends to cushion the pressure between the bones and the floor. So one feels as though one is walking on pebbles and this can be quite painful with the development of hard callous on the sole. We would recommend wearing insoles to the shoes.

Raynauds also contributes to the pain particularly in cold weather and this can be treated with a variety of medications or a lumbar sympathectomy. We are always mindful of the role of the large vessels contributing to the circulation in the feet, so we sometimes arrange to do vascular studies to see if there is an obstruction to these arteries which might be amenable to surgery and thus improve the circulation to the legs and feet as a whole.
What is a lumbar sympathectomy?
Normally small arteries or arterioles are kept partially shut by the sympathetic nerves. If the tissues need more blood the nerves become less active and the blood vessels widen in order to let more blood through. The sympathetic nerves travel down the back adjacent to the spinal column. These can be disrupted by an injection of phenol, under local anaesthetic, to improve the symptoms of Raynauds of the feet. This is usually preceded by a temporary injection on one side in order for the patient to experience the benefit before consenting to the permanent injection. Generally some relief is felt immediately but it may take some time before maximum benefit is felt. Side effects include increased dryness of the skin, occasional burning sensation of the extremities and swelling of the legs.
In what ways is the skin affected in scleroderma?
The skin can experience itching and tightening and can be dry. Other ways the skin is affected include pigment changes, telangiectasia, calcinosis and ulcers.
What are pigment changes?
These involve an increase in pigment (which looks like a skin tan) or a spotty loss of pigment. There may be a decrease in hair over affected areas of the skin, as well as a decrease in the ability to perspire.
What are telangiectasia?
Telangiectasia are small dilated blood vessels in the skin. This abnormality consists of the dilation of small blood vessels near the surface of the skin, which become visible as small red spots, usually on the fingers, palms, face and lips. The spots usually fade with pressure, but turn red again when the pressure is released. These spots are generally not harmful. Special cosmetics may be used to mask the spots or to reduce their visibility. In severe cases, or where a person is very affected by the telangiectasia, laser therapy can help to remove the red spots. Treatment, however, can be slightly uncomfortable and may not be permanent.
What is calcinosis?
Calcinosis is a condition characterized by deposits of calcium in the skin which may be painful. The calcium deposits may occur just below the skin surface in the form of hard lumps or nodules. They may break through the skin, becoming visible as chalky white material, and they may become infected. Care should be taken not to bump or injure affected areas. Hand-waxing may be helpful. Antibiotics may be prescribed to prevent or control infection. In severe cases, minor surgery to remove calcium deposits may be required.
What are ulcers?
Ulcers are caused by poor circulation and/or trauma. They usually occur on fingertips and bony prominences. They can be painful and debilitating and may become infected.

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