KC with eczema: hospital referral help needed

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Andrew MacLean
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Re: KC with eczema: hospital referral help needed

Postby Andrew MacLean » Mon 15 Sep 2008 6:46 am

Here we come to the old chestnut:

"The Government" in this case refers to the structures of the state at Westminster. If you were sitting in my chair with view across the broad sweep of the Clyde Estuary towards Helensburgh, the same term "The Government" would, in the context of health care, refer to The Scottish Executive. They have a department that keeps changing its name, but is currently called "Heath Scotland", and they do monitor and audit all the clinical departments in Scottish Hospitals.

They know where there are ophthalmology clinics, audiology clinics and everything else.\

The problem for people who lived Helensburgh was that they used to be in the area covered by the Argyll and Clyde Health Board. That took in every hospital from Oban to Inverclyde EXCEPT Glasgow which was covered by a different Health Board. The nearest hospital to Helensburgh is, in fact, the Vale of Leven; but the vale does not have a cornea clinic. That left two 'local' hospitals with ophthlmology departments: Inverclyde Royal Hospital and The Royal Alexandra Hospital in Paisley.

It always seemed odd to me that people had to travel through Glasgow and past the door of Gartnavel to get by train from Helensburgh to Paisley. By car the route is more direct and Paisley RAH is actually much easier to reach than Gartnavel.

The Health Boards have now changed, and the old Argyll and Clyde Board has been merged with the Greater Glasgow Health Board. The new one is called "The Greater Glasgow and Clyde Health Board". This puts Helensburgh right into the zone covered by Gartnavel and the RAH. For people who travel to clinics by train Gartnavel makes much more sense; it is only one train ride from Helensburgh and there is a station at the hospital gate.

I wish Lizzie well with her appointment with Dr Ramaesh. He is excellent and his staff have always seemed to me to be both expert and generous with their time.

Andrew
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Anne B
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Re: KC with eczema: hospital referral help needed

Postby Anne B » Thu 18 Sep 2008 8:02 pm

Hi Lizzy, Just been reading your post and would like to let you know that i have been in the same position as you.
by the time my KC was diagnosed my eczema was at a really bad state and totaly out of control. i was reffered to the consultant that i see know for my eyes and he decided that before we tried anything to sort out the KC we had to get the eczema under control. I was put on oral steriods and immune suppresent (cyclosporin) I have never heard of these being used for cancer treatment. Mainly used to stop transplant rejection.
This medicine has changed my life, My eczema is under contol and no flare ups. The skin around my eyes still gets sore but is managable. I don't take steriods anymore but still take a small dose of cyclsporin twice a day.
I have to have monthly blood tests (for creatine levels) and monthly blood pressure. So far these have all been fine and have had no problems with this medication.
Now i can hear you al screaming"what about the long term problems" Well for me i have never felt better and i am willing to take that risk, I am a live for today kind of person!
Taking this medication has made it possible for me to have 2 grafts, as my surgeon was not happy to do the ops with so much allergic eye disease.
I was very scared when i started taking this medication because it seemed such a big thing but i have never looked back.
Hope this helps in some way and i hope you get it sorted soon, I really feel for you at the moment x
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BusyLizzy
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Re: KC with eczema: hospital referral help needed

Postby BusyLizzy » Fri 19 Sep 2008 9:43 am

Hi Anne,

It's heartening to know that your eczema was a priority for treatment by your ophthalmologist.
I will say that a few years back, the eye specialist took one look at me and actually took me down to derm to be looked at and taken care of. The only thing was that at that time it was not as severe and mainly my hands and scalp which were affected, so I was given ointments, creams and gloves.
I'd have thought that now it's all over my neck, ears, eyes, arms and lips that it would be dealt with more seriously and sooner.
There are two main immunosuppressant drugs used: Cyclosporin, as you mentioned, and Azathioprine. Sometimes Methotrexate has been used. The latter two are also used in IBD, MS and some cancers.

I've been under a nutritional therapist and we're trying a combination of supplements for skin and immune support. It's looking as though I may be lactose intolerant, so I'l have to eliminate lactose for a while and reintroduce it, but these things are not wholly causing the problem. I will do all I can before having to opt for Cyclosporin/Azathioprine.
Keep looking for rainbows.

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Re: KC with eczema: hospital referral help needed

Postby Pickled247 » Sun 05 Oct 2008 5:30 pm

Hi, I am new to this site today, but I read Busylizzy's post and had to reply. I have KC and eczema and am on immune-susspressants, and have been taking them for a few years. yes you have to have blood tests (every siz weeks once your consultant is happy with your blood count) and regular hospital checkups, but other than remembering to take the tablets, I have had no bad sideeffects and my eczema is so much better. I hope your appointment has come through and that the hospital are helping you.

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Andrew MacLean
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Re: KC with eczema: hospital referral help needed

Postby Andrew MacLean » Mon 06 Oct 2008 6:08 am

Pickled247

Welcome to the forum, and thank you for a really supportive 'first post'!

Andrew
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