My name is Susan, and in 1996, 21 years ago, I was diagnosed with Sjogrens syndrome.
I can pinpoint the time that things started to change for me and it coincides with when a skin specialist in Western Australia put me on Roaccutane to treat nodulo-cystic acne. I believe that my physical decline since being on this drug is no mere coincidence.
After being on antibiotics long-term, Roaccutane was a last resort to clear my skin up. I was a professional violinist, and holding a violin under my chin for hours on end each day was becoming increasingly painful with this dreadful skin condition.
I had to sign a lot of disclaimers before commencing treatment, as this powerful drug is known to cause birth defects. I had to agree to have an abortion if I were to conceive whilst on Roaccutane and was advised not to conceive for at least 12 months afterwards. This was a terrifying thought for a young woman in her mid-20s.
My nose became really dry and bled a lot and my lips blistered all the time. I got dizzy too. This drug is photosynthetic, so I was put on it during winter, but because my side effects were so bad, they had to halve the dose and double the time I was on it for 8 months. I could not go outside without a shield up against my face .
I noticed that I suddenly became sensitive to cigarette smoke. This was back in the bad old days when people could smoke in restaurants.
I am not asthmatic, but I developed bronchial spasms when I was in a confined space with smokers. This caused panic attacks, and I would often have to run outside gasping for air, feeling very distressed, hyperventilating and in tears. Many a time I was told it was all in my head and I should just learn to put up with it. Needless to say, my social life was gradually reduced to virtually zero until smoking was finally banned in restaurants.
When I was 28, I met a wonderful man but he smoked. When he asked me out, I said “Sorry, I can’t go out with smokers” so he quit after being a smoker for 17 years and we stayed together for 16 years.
We had to make a conscious effort not to make friends and socialise with any smokers and this involved a fair bit of culling, but we managed.
The first symptom I remember experiencing, which I can now attribute to Sjogrens syndrome, was chronic fatigue. I had always been a high achiever and had plenty of energy, so to feel like I was going to collapse unless I slept was hard to deal with.
As time went on, it became harder for me to cope with the extreme heat in Western Australia. This had never bothered me before and I put it down to age. I had reached the grand old age of 30, so maybe this is what happened!
As well as playing and teaching the violin for a living, I also taught English as a foreign language to adults in language colleges and universities. One day, after driving to work on a hot day, I passed out from heat exhaustion. I made up my mind that I would have to move to a more moderate climate. Two years later we made the move to Sydney which has a much more moderate climate and higher humidity.
Nevertheless, my health deteriorated rapidly. One day, 28 days after arriving in Sydney, my face broke out in hives especially around the eyes which were blown up, and the skin was purple and itchy. My face looked like elephant woman. Various doctors put me on antibiotics drops, thinking it was an infection, until someone advised me to go to the Sydney Eye hospital. It was there that they did the Schirmer test to measure my tear production. They suspected Sjogrens as my eyes were so dry and they advised me to find a rheumatologist.
I did this, and was diagnosed with Sjogrens , even though the markers did not show up in blood tests. Apparently, it is quite common for the markers not to show up for many years. My rheumatologist had a 14 year old son with Sjogrens, so she recognised the clinical symptoms immediately. I was advised to lubricate and moisturise.
I found it very distressing to know that I had an autoimmune disease for which there was no cure and that my health would gradually get worse.
It sure did get worse .
I had suffered from psoriasis since my 11 year old brother was killed ( I was 16 at the time ) and now it came back with a vengeance even covering the soles of my feet and hands. Itch and burn …. repeat.
For the first 15 years since being diagnosed with Sjogrens, my main problem was chronic dry eyes.
I learned to cope with this by having drops in my pillowcase at night so I could find them by feel . If I tried to open my eyes to find anything, I would tear the cornea. You learn fast!
I’d then have to lubricate with Polyvisc ( sterile white paraffin and wool fat) as normal drops or gel only last a few minutes in my eyes. This means getting up to the toilet during the night wakes me up completely.
DRY MOUTH (and Allergic Reactions)
I noticed that my mouth and throat were also becoming increasingly dry and sensitive. I developed a strong aversion to perfumes and fragrances.
I’d get a blocked nose and headache very quickly if exposed to perfume. The migraines became more frequent and last up to 4 days at a time.
The dryness in my mouth is now so bad that I react quite severely to fragrances, cigarette smoke and chemicals in one of three distinct ways:
1, my uvula blisters and then my throat gets really sore, and starts swelling up and closing my airways. I also lose my voice when this happens which is petrifying because I am not able to call for an ambulance. I have learned to self medicate by treating this condition initially with antihistamines and oral steroids (prednisolone) and if this does not work, I put someone on alert to maybe call an ambulance if I have to use my Epipen.
The first time my throat reacted in this manner, I really thought I was going to die. I was alone, it was 2 am, and I had been to the dentist to have amalgam fillings removed. The latex dam touching my mucus membranes had caused an allergic reaction. My throat swelled up and looked like a jellyfish. I took a strong dose of antihistamines and sat up shallow breathing all night long. I really thought my number was up.
2, the usual response I get to smelling virtually any type of fragrance, chemical or cigarette smoke is migraine and fatigue . This can put me in bed for 2-4 days .
3, some smells make me go extremely dizzy and my knees give way and down I go . Afterwards, I’m wiped out.
Until recently, I dealt with oral dryness by using tooth mousse plus and dry mouth gels during the night and chewing a xylitol boosted gum during the day .
Now I use xylimelts at night and they are great .
Eating out can be problematic as I have to check all the ingredients. I cannot eat anything which might burn dry sensitive mucous membranes. This includes chilli, pepper, horseradish, mustard and raw onion. Consequently, I cook at home a lot. Also, many waiters spray cleaning products into the air rather than into the cloth when wiping tables.
Shopping centres are very hazardous for me now because of the dry mouth sensitivity. Many shops display scented candles and oil diffuser sticks which I must avoid.
Even in the supermarket, I have to hold my breath and hurry past the detergent aisles.
Another area that is very dangerous for me with such a dry mouth is public toilets. It seems to be the norm now to have air fresheners pumping out sprays which are set on timers. I simply cannot go there .
I am prevented from joining group activities unless they involve friends I know because the risk of perfume exposure and getting sick is too great.
As I come from the land down under, I will now move on to the nether regions!
In 2010, I had a second abnormal Pap smear requiring a LLETZ and D&C. Polyps and complex atypical hyperplasia were discovered in the endometrium and abnormal cells in the endocervical canal. I was referred to an oncologist, Professor Russell Hoggs, who said that as I had Sjogrens, this meant my body did not behave predictably. With anyone else, he said an IUD would be fitted releasing progesterone and the D&C would be repeated in 3 months to see if things had settled down. He said the only safe option for me was a complete hysterectomy. This was difficult for me to accept and I felt that Sjogrens had cheated me of my womanhood.
I asked the surgeon about loss of pigmentation I was noticing and he said he thought it may be related to Sjogrens but was not sure.
I now see a great gynaecologist who spotted I had lichen sclerosis, vulval psoriasis and referred nerve pain. May as well have the lot!
I take 1 mg of oestradiol daily to prevent the delicate skin splitting, but the downside of this is needing 50 mg of diflucan three times a week to control systemic candida.
I have constant bloating and constipation and have gained 8 kilos in weight since the hysterectomy.
Fortunately, I was underweight before, but I do not recognise my body now.
After the hysterectomy, my hormones plummeted, and I went into a severe case of clinical depression.
I had also separated with my long-term partner, so I went through this terrible time alone apart from the support of my parents.
My initial rheumatologist had long since retired, but I was seeing another doctor, who prescribed me a low dose of Lexapro (10 mg per day). He said this drug was sometimes helpful with Sjogrens. At a subsequent visit, I asked him if this was true, or if it was just to help me cope with feeling so terrible most of the time. He admitted the latter, and I thanked him for virtually saving my life.
Getting my seratonin levels sorted out helped me to think more clearly and I worked out that to give myself a fighting chance in managing this awful syndrome, I would have to let go of my beautiful house and garden and make a seachange.
I did this three years ago, and now live right on the beach. I take a dip in the ocean every day and enjoy the salty air. I call it Dr salt!
It has taken many years to come to terms with this cruel disease and with the lack of understanding and ignorance in the general community.
I desperately hope some research breakthrough occurs soon to help autoimmune sufferers like me. I fear my body will wear out before I do!