One family’s differing experiences getting an eczema and allergy diagnosis.
NB: Since writing this I have stopped using Protopic and all topical steroids and am going through both Topical Steroid Withdrawal and Protopic Withdrawal.
Allergies, eczema and asthma are prevalent in my family. Geographically we are all spread across the South East in very different counties and received very contrasting support, medication and treatment.
Thirty something in Enfield
My sister, who lives in Enfield, has received immunotherapy for her grass allergy and is now able to mow the lawn, enjoy the summer (well, you know what I mean) and rarely needs to take antihistamines now. Previously she used to suffer terribly with red swollen skin on her face and neck, anywhere she came into contact with grass, her eyes and streaming nose. She stayed indoors most of the time before.
She also suffered with dreadful eczema but after being prescribed Protopic to treat it, which is not a steroid, she has been rid of the eczema ever since as well and only uses it occasionally and sparingly.
Me in the Home Counties
I’ve asked my doctor about Protopic but been told that because I don’t have enough eczema outbreaks each year, I don’t qualify… ie. I only have approximately five to six bad episodes where I need strong steroids to shift it. If I had double that, which would mean every month covered in eczema, I would qualify, but because I have the odd month free of chronic eczema I should be fine and just suffer on.
What my doctor does not realise is that I use the steroids sparingly and actually have some kind of allergic reaction sometimes as often as as twice a month. These episodes are usually triggered in some way by eating out, eating processed foods or eating in someone elses house. I do try to be careful and always check labels, but I have reactions even when dairy, nuts, celery or tomatoes are not listed in the ingredients. I’m never sure whether manufacturers bother to list the celery and tomato as they are less common allergens. When he sees me it’s because the steroids have run out and the eczema has come to stay in a big way.
Yet I keep hearing about how good Protopic is. Could it rid me of eczema for good as it has for my sister?
Six year old neice in East London
My little neice who is six and has just started to have painful, red itchy eczema around her eyes, which is triggered by eating milk, has begun the journey of discovery through the NHS herself. She was born prematurely and milk intolerant as an infant but since then had been able to eat all foods without trouble. They are waiting for a referral for allergy skin prick and blood tests to confirm the milk allergy, but for now have been advised to avoid dairy until the appointment can be arranged. Who knows how long that will take… In the meantime, she was been prescribed Protopic to treat the eczema and it cleared it up so quickly you now wouldn’t even know she’d had excema at all.
So how can three different counties have such different policies for the same symptom? Eczema and or allergies.
What is Protopic?
There is a website all about Protopic which in a nutshell, describes the oitment as:
“Protopic is the only TCI indicated for moderate to severe eczema. Since approval by the Food and Drug Administration (FDA) in December 2000, an estimated 2.1 million patients in the United States and 5.4 million patients worldwide have been treated with Protopic.4 Important Safety Information
Protopic Ointment is a prescription ointment used to treat moderate to severe eczema. Protopic is for use after other prescription medicines have not worked or when a doctor recommends that other prescription medicines should not be used. Protopic should be used for short periods, and, if needed, treatment may be repeated with breaks in between. Protopic is available in two strengths. Adults may use either Protopic Ointment 0.1% or 0.03%. Children 2 to 15 years of age should only use Protopic Ointment 0.03%. Protopic should not be used on children younger than 2 years of age.
Is Protopic safe to use?
WARNING: The safety of using Protopic, and drugs like it, for a long period of time is not known. A very small number of people who have used Protopic have had cancer (for example, skin or lymphoma). However, a link with Protopic has not been shown. Patients should avoid using Protopic continuously for a long time and apply Protopic only to areas with eczema. If the eczema does not improve within 6 weeks, patients should talk to their doctor.
This guidance above was certainly not how I was advised to use it. My dermatologist urged me to use more and more, all over my body and more often. Very worrying.
Protopic should not be used by patients who are allergic to any of its ingredients. The most common side effects with the use of Protopic are stinging, burning, or itching.
Patients should avoid natural or artificial sunlight (sun lamps or tanning beds). Patients should not use Protopic if they have a skin infection on the area of skin to be treated. The skin being treated should not be covered with bandages, dressings, or wraps.”
It’s a bit worrying that they mention a link with skin cancer – this will probably put me off trying it at all. How slight is that link? Would those people have got skin cancer anyway? How long had they used it for? Did they use too much? Did they have excessive exposure to the sun? Does this ointment make a person more sensitive to the sun? So many questions. Always so many questions. With skin cancer running in the family I’m inclined to steer clear.
Rebound flares using topical steroids (a sign or TSW – if only I’d known)
Having said that, Elocon, which is what I usually get prescribed, works really well for clearing up my eczema flare-ups, when I can get my hands on it, which involves regular phone calls, there is never an appointment available and usually ends with me begging for help and crying on the phone. However, the eczema generally comes back after a while. No idea why. No idea what triggers it. No idea how to stop it.
What else can you do to heal eczema?
So recently I asked my doctor what else I could do. His answer was that they had pretty much done everything they could for me and there wasn’t much else they could do. I contacted my dermatology clinic where I’d been last year, for another appointment and been told that because I hadn’t been to see them for a while I was no longer on their books and would need to seek a new referral.
My doctor was reluctant to do this and asked me what good I thought it would do, and whether I really thought this was worth it. When I asked him what else he thought I might do or try or where else to get help, he had no answers. I am unable to eat out without fear of an allergic reaction and have to prepare all food from fresh myself. I don’t mind doing this and it means we eat very well, but it’s wearing. It’s tiring. I want to know what it is that I’m coming into contact with in processed foods and restaurants that’s causing me a problem. Is it cross contamination of my known allergens, or something else that I should be able to try to avoid? The conversation ended with me in tears, again (why do I do that when I’m speaking to doctors – so annoying).
No support from local NHS dermatology servicees
Clearly, he was right. It was a waste of time. It seems that the NHS can offer the standard skin prick and blood tests to known allergens and then that’s it. End of the road. Off you go and get on with it. I’ve been doing this for years but things seem to be getting harder, not easier.
Here is what it said in the letter from my local dermatology hospital:
“I am sorry to inform you that due to the volume of people being referred into the system, in conjunction with some internal vacancies, it is not possible to see all patients referred to our allergy service. In light of this, your referral has been sent back to your GP who has been made aware of the current status of the service.
With your best interests in mind, and to try to ensure you are seen as quickly as possible, we have advised your GP of other providers of allergy services in the region who are currently able to care for your allergy needs.”
Oxford Hospital seems to be my next port of call. I understand my request has been sent on there but I’m not holding out much hope. I hear the shops in Oxford are quite good though…
Are affluent areas subsidising poorer NHS trusts?
Is the situation really that bad? Am I paying my taxes in a fairly affluent area to subsidise people in less well-off areas? I know I am very lucky to live where I do but this doesn’t mean I’m rolling in money. Where my brother and sister live are less affluent counties, and both seem to get far better treatment.
OR is it that there are far higher incidences of atopic conditions where I live compared to where they live? I’m encouraged to hear that they are getting help but I think the answer for me is to just continue on as I have been doing. The doctors do not have the answers or the money to provide the treatment I need. Immunotherapy would do very nicely but I’ll have to settle for begging for meds on a regular basis and being grilled about the last time I was prescribed them, blah blah blah… At the moment I cannot afford to have private immunotherapy treatment. It does not come cheap!
Let’s heal naturally
I’m now dedicating my journey to eating fresh, organic, local produce, experimenting with natural remedies and doing the best I can to cope on my own. Thank goodness for organisations like Allergy UK and The Anaphylaxis Campaign without whom I really would be coping all on my own.
I wrote this blog a while ago and am just re-reading today ( Sept 2022) . if I could go back to that Ruth and tell her, be careful what you wish for… but despite all the bad advice you get, you’ll be OK. You will heal and you can heal!