Thursday 17 April 2014

'It was a great relief to finally know what it was so I could get treated'

Elaine Griffin faced a long battle to get a diagnosis for her mystery skin condition

Elaine Griffin faced a long battle to get a diagnosis for her mystery skin condition.
Elaine Griffin faced a long battle to get a diagnosis for her mystery skin condition.

'Why am I so tired?" That's the question I've been asking myself for so many years. "Does everyone have these aches and pains?" ... "I don't want to complain. This must be normal". Soon my secret admirer would introduce itself.

Let me go back maybe six years. I wasn't long back to work after my maternity leave having had my third boy. Life was great but very busy, never really stopping to catch breath, getting on with my job, housework, shopping and general family life.

It wasn't long before the aches and pains started to increase and a red itchy rash appeared over the bridge of my nose. I decided to go to my family doctor and after a quick couple of questions he said that I was maybe a little run down and needed a good tonic, to take tablets for the aches and pains and to use cream for the rash.

The cream seemed to work, but as soon as I stopped applying it the rash would reappear. Over the next couple of months, I made several more visits to my doctor but his advice never really changed.

It was during the summer of 2011 that things really started to concern me. I was feeling even more tired and wanting so much to sleep during the day. My eye lids became puffy and swollen which was proceeded by a red and very itchy rash.

By now the rash on my face appeared on my left cheek and was spreading around the back of my ear causing my hair to fall out leaving behind a very big bald patch. Thankfully I have long hair and was able to disguise it.

Enough was enough I was going back to my doctor to try and sort this out once and for all. As with most doctors, they sit you down and ask you "What brought you in to see me today?" I voiced my concerns about my usual aches and pains, my rash spreading, hair loss, nausea, etc and tried to remember all the questions that needed answering. After a quick examination of my temperature and my knee reflexes he said that he would like to take a scraping off the rash from behind my ear. When this was done he asked me to bring it to the hospital to be analysed for "fungus" and that he would have a result after about two or three weeks. In the meantime he prescribed me tablets to take, twice daily for two weeks.

Before I left the surgery I asked him about maybe seeing a dermatologist but he said that "we should not panic, take the tablets and wait for the labs to come back, that we should try every other avenue first".

Being my doctor for many years I went along with his advice . . . three weeks later my skin sample came back negative for "fungus".

John and myself had just come back from a lovely mini-break in Menorca towards the end of that September, I was feeling well and re-energised, but after a couple of days I noticed a slightly raised, blotchy rash on my chest, back and tops of my arms. The rash was back, I needed to get it checked out but I had, by now, lost all faith in my doctor.

A good friend of John's recommended a doctor who was a GP but who also has a special interest in dermatology. I made an appointment to see her the following day. This doctor was amazing, completely different in her approach to my problems, and after examining my rashes she more or less thought that I could have lupus but she needed to do some blood tests and a biopsy to be sure. She said that I was showing many of the 11 symptoms of lupus. I had my bloods done and would have results back in a week or two.

The following Friday I returned to the doctor to have the biopsy done. She noticed that the rash was slightly more aggressive and prescribed cream to use and told me that if it got any worse to come back to her immediately. My biopsy results were due in a few days.

Over that weekend I went downhill. The rash was spreading quickly and I felt so nauseous. With there being no surgery on Sundays, John rang the local doctor who came out, but he didn't seem to know why the rash was spreading so fast and thought that perhaps it was "something I ate".

First thing Monday morning I was back to the doctor with John. By now I was completely covered from head to toe in the rash and felt so ill. The doctor said I needed to see a dermatologist as soon as possible. Unbelievably she got me to see a specialist two days later and in the meantime put me on 40mg of Prednisolone.

Myself and John met the specialist and immediately felt reassured and comfortable with him. He straight away confirmed the GP's diagnosis that it was indeed lupus but that he had to do his own investigations to see what form of lupus we were dealing with.

He told me that the ingredient Terbinafine hydrochloride may have brought my lupus to the surface. He took me into hospital that afternoon. I was put on 400mg of Plaquenil, 40mg Prednisolone and cream for the rash. Now all I had to do was wait for my results. On October 20 I found out that I had subacute and discoid lupus. It was a great relief to know what it was and that at least now we could treat and control it.

It is several months down the road and I'm not doing too badly. I've come down from the Prednisolone and now I am taking the Plaquenil everyday and calcium tablets for my bones.

Sure, I get days where I'm sore and tired but without the strength, love and support from my family, especially John, I may not have been able to get my head around this illness and cope in the way I have.

'Living with Lupus' is available to buy online at for €13.99 or the downloadable version is available to purchase for €10.

Irish Independent

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