The GPs both prescribed steroid creams of increasing strength, all of which seemed to work for a short time, but then stopped. Eventually after months of using Dermovate, which is pretty much the strongest steroid on the market, I asked for a referral to Dermatology.
The first Dermatologist I saw was sympathetic and understanding, which helped. She offered the following:
- UV light therapy - I was to come to hospital twice a week for 3 months, for a 15 minute treatment. The hospital is 25 minutes from my home, there is no hospital parking, and finding expensive pay and display parking on the packed high street is a nightmare. Add to that the fact that I am a working Mum with a toddler, and my employer (which happens to be the NHS) insist on us using annual leave for medical appointments….well, this wasn't an option for me, even though it appealed.
- Methotrexate - this is an extremely toxic drug, which is used for cancer treatment in higher doses. It would mean regular blood tests and cannot be used in pregnancy. I took the prescription but after doing my research, decided that it wasn't for me, particularly as my husband and I are considering adding to our family in the not too distant future.
- Prednisolone - a course of oral steroids. Oh, how I wish I had researched this too. I took this option in desperation and of course my hands cleared beautifully. But I endured weeks of insomnia and increased appetite, and as soon as I tapered off the treatment the resulting flare up was my worst yet. Never again.
In a letter to my GP, the Dermatologist mentioned that I might consider a low nickel diet if the above treatments didn't work, and said she would discuss it with me at our next appointment. This is the first and only time that a medical professional has suggested the possibility of treating the cause, rather than the symptoms.
I arrived for my next appointment feeling positive and armed with questions about the possibility of dietary links to eczema, only to be greeted by a completely different Dermatologist. So much for continuity of care.
After going through the entire history of my DE again, this Dermatologist completely dismissed the suggestion that there might be a link to diet. She began asking me what creams I had tried….I could see where this was going. I was insistent that I had tried steroids and they didn't work and I didn't want to continue. She prescribed me Protopic - not a steroid, and not something I had heard of before. To be fair, I am currently using the Protopic to keep the flares under control, but it certainly does not clear the problem completely, and I have my concerns about using it long term.
I also requested - no, insisted - to be referred for patch testing. I had been patch tested previously over a decade ago and already knew about my allergies to nickel, cobalt and lanolin, but I suspect I may have developed new allergies since then. The Dermatologist rolled her eyes at me, but clearly keen to get me out of her clinic, she made the referral. That was almost 2 months ago, and I am still waiting for an appointment letter.
Frustration is probably my main feeling towards these medical professionals at the moment. Frustration at their lack of understanding of this condition and how it affects people, and frustration at the lack of focus on supporting patients to find and treat the root cause of the problem.
I'd be very interested to find out if others have had similar experiences - are there any forward thinking doctors out there?!
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