Jeff Green | Aug 12, 2015
Marilyn Bolender is happier these days. After suffering for five years from a condition that can only be described as a maddening, she has found an experimental treatment that is working.
The disorder she suffers from is not well known, and that is one of the reasons that she has come forward to talk about it after only letting family and close friends know about it for five years.
The condition is called Chronic Ideopathic Urticaria (CIU). It is described by the website e-medicine as “not a single disease but a reaction pattern” that persists for longer than six months.
In lay terms, it is hives or welts that can be as large as three to four inches across. They do not last longer than two hours before receding, but new ones occur regularly.
Like many other skin lesions they are skin irritations and they tend to be itchy.
“It is hard to describe the sensation,” said Bolender, who has now been hive-free since March. She said that she had hives or welts all over her body, except on her face, on an ongoing basis for five years.
“Nothing worked at all. I went to allergists and skin doctors, and tried all kinds of antihistamines and other medications, but nothing touched it,” she said.
Finally last year, she began to see a skin specialist in Peterborough, Dr. Melinda Gooderham, who concluded that in Marilyn's case there was no allergy involved.
A trial for a drug called Xolair, originally developed as an asthma drug but later approved for use on skin disorders in the United States, was undergoing a trial in Ontario and Dr. Gooderham enrolled Bolender in the trial.
“They started me on 150 units, which did not work, then upped me to 300, and that did not work either. When I was told that I was going to be dropped from the trial at that point, I just lost it. I didn't know what to do. Dr. Gooderham said to give her a bit of time, and eventually she convinced the company to put me on a larger dose, 450 units, and after a couple of injections it started to work.”
The drug is expensive, but fortunately Bolender is covered under a drug plan that covers 80% of the cost, and the company that produces Xolair is covering 92% of the extra cost, leaving Bolender with a cost of $42 per month.
“I'm very grateful to have found relief” she said, “and that is why I am coming forward now, since many people who suffer from CIU are unwilling to talk about it because they are embarrassed. But whether they receive the treatment that works for me or another form of treatment, it is important to be diagnosed and to start finding a way forward,” she said.
The company that produces Xolair, Novalis, have put up a website about CIU, called “Itchingforanswers.ca”
The website provides information about CIU and does not talk about Xolair. Instead it promotes the use of a new generation of oral antihistamines (Ni-AH) as a first treatment option.
Xolair, which is expensive and carries a degree of risk, is prescribed only for those for whom anti-histamines are ineffective.
“Our main message is that people who suffer from CIU identify the disorder and seek effective treatment,” said Nick Williams, a communications consultant with Argyle Public Relations in Toronto, a company that has a healthcare and pharmaceuticals division.
It was Williams who contacted the News about Marilyn Bolender's story.