Your Stories - Immunosuppressants

Cyclosporin helped my husband - UK

My husband has had severe atopic eczema since early childhood. Over the past 20 years it has gradually deteriorated to the point of being virtually unbearable. He has had to give up work and we have lost our home, basically neither he or myself no longer have a life. Probably the 'experimental' treatment that has been the normal treatment has also caused other problems. However after a recent brief spell in a hospital (not the one he normally attends for dermatology and hematology) the doctors there, after seeing the appalling condition of his skin suggested that he see their dermatologist. This guy seems to us to be some sort of miracle worker. He prescribed Neoral (Cyclosporin) and within 3 weeks his skin was almost clear of eczema and the itching has reduced tremendously. We asked the doctor how long this treatment had been available for treating eczema and were told "since 1986". Why, oh why has this never been offered before? He has been told to bathe 2 - 3 times a day, apply cream continuously, given PUVA and UVB treatment to the point of burning his skin, antihistamine tablets that made the itching 75% worse, enough different creams, ointments, washing solutions, and pills to treat the world, all to no avail. I am left asking is this a post-code issue? Do the majority of the skin medical profession really appreciate how very distressing it is when the biggest organ in ones body is causing so much discomfort. The dermatologist now treating my husband likened his skin condition as disabling as MS in a wheelchair. I just feel that many sufferers of this ailment are not given the best treatment available and that it all comes back to the pharmaceutical industry who want to make money out of peoples misery by treating them in such a way as to prolong their illness.
(February 2007)

Cyclosporin - Alistair, Elderslie Paisley, Scotland

As with Ellie's letter, I have to tell you that I was also put on cyclosporran for the treatment of atopic eczema, a condition I have suffered from since birth some 48 years ago. The initial treatment was great, it worked really well and as a side issue it cleared my asthma but for some reason the type of drug was changed,a different brand I can't remember the name, but I was advised that it would work just the same. Well on taking this particular immunosuppressant I almost immediately noticed a harshness about it. Hard to explain, it did nothing for my asthma and within approximately two weeks caused a herpes virus on my left eye. This has now left me virtually blind in that eye due to scarring. So a cautionary note to all when using these powerful drugs - beware! (April 2005) Contact Alistair

Immunosuppressants and vaccinations - Deborah, Hampshire, UK

I took my daughter to the doctor recently for her pre-school boosters. There was sign in the waiting room saying that if the child was to be in contact with a parent or carer who was taking immunosuppressants to talk to the nurse. I have yet to find out, but there is obviously some risk involved here! (August 03)

Cyclosporin - Ellie, UK

I had a rare and dangerous reaction to the cyclosporin I was on (having taken it for 2 years+). I began to lose my eye sight and am thought to have developed a rare condition called Leuko Encephalopothy Syndrome, either that or Benign Inter-cranial Hypertension - a build up of pressure on the brain caused by Cyclosporin. My dermatologist thinks that there have only been 4 cases worldwide to date. I am stable at present, and have an MRI scan booked for next Tuesday. My eyesight has returned now that I'm off Cyclosporin, but so has my severe eczema. I am totally devastated at the prospect of having severe eczema again after 2 years eczema free. Just wondered if you'd ever had any reports of this from anyone else on your site? (August 2003)

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Page created: 8 February 2007