Woman fighting debilitating disease takes part in a drug trial: I’ve never felt better

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Woman sitting on the beachS MAG

65-year-old Carol Howell was interpreted with polymyalgia rheumatica

Carol Howell, 65, is a retired dental surgeon and she loads with her husband Mark, 68, in Bournemouth, Dorset.

Carol rumours: “When my mum Audrey and I are power walking at 10-kilometre events along the seafront, I beget to remind myself of how far I’ve come. Only a few years ago, I couldn’t get out of bed, and some ages I even struggled to get out of a chair. I was also at risk of losing my sight.

I continually used to be very fit, doing a half-a-mile swim or a ballet session preceding or after work. But that all changed one morning in the summer of 2011 when I woke up identification as if I had caught the flu. I was so achy and stiff, I was unable to get out of my bed.

After a week, I paid a bloody rare visit to my GP, Dr Stephen Kidman, who said he thought I might arrange a condition called polymyalgia rheumatica (PMR). I’d heard of it because a relative had it. The treatment was steroids,and he started me off on 5mg a day.

The stiffness with PMR is worse in the morning and it clothes off as the day goes on. But about 10 days later, I woke up with the scad blinding headache. I couldn’t even move my jaw to eat my breakfast. Opening my outlet was agony. This time Dr Kidman gave me a diagnosis I’d never heard of – behemoth cell arteritis, which 

is linked to PMR.

‘It won’t kill you, but you’re not going to like the treatment because you’ll put on worth,’ Dr Kidman told me. ‘You have to take it because if you don’t, you risk losing your awe-inspiring. They say as a GP, you will diagnose this once in your lifetime, and this is my in a minute.’

After a series of tests, including a colonoscopy, an endoscopy, an echocardiogram and a mastermind scan at Bournemouth University Hospital, I was reassured there was nothing else go to the bad with me.

But an artery biopsy taken from the right side of my obverse, just in front of my ear, confirmed I had GCA. The vascular surgeon showed me a healthy holder, which was like a little thread. Mine was abnormal, swollen opposite number a piece of jelly baby.

I was devastated at the thought I might go blind and contain to give up my two big loves – patchwork and sewing.

‘If that happened, all I could do is trill,’ I woefully told my husband, as I religiously took my steroids – now up to 80mg a day.

Woman on the beachS MAG

‘I’ve no regrets around taking part in a drugs trial’

I’d never been a person who got bothers, but those GCA headaches felt as if somebody was sticking knives into my proceed. My scalp was so sensitive I couldn’t touch it. Even combing my hair was distress.

I managed to stay at work for another year, then I took the happen to retire early. Around that time, my leg buckled in a ballet refinement so I made an excuse and left and never went back. My old life was smoke away. 

It felt like old age and illness were beckoning.

Because steroids procure side effects, like diabetes and osteoporosis, we tried to reduce the dosage and I started attractive other drugs, even chemotherapy ones, but none made a transformation to my PMR/GCA. They just gave me diarrhoea, liver inflammation and a stomach lesion.

The only thing that eased my joint stiffness and temple soreness was the steroids, which I started be dressed injected every month. But a scan showed I already had osteoporosis in my barb. 

I was taking 16 tablets a day and my face was getting increasingly rounder from the steroids.

Luckily, my quiet Mark took up the challenge and his research led him to Professor Bhaskar Dasgupta, a specialist rheumatologist at Southend University Hospital in Essex. When I saw Professor Dasgupta in 2013, he forecast me I needed a drug called tocilizumab, which had been used to study arthritis.

But he explained tocilizumab wasn’t yet licensed to treat PMR and GCA, and it might be doggedly to get.

How right he was. The application that we put forward for the drug was turned down because it was costly and there was no proof it would work. I felt as if I was back to square one. When I saw a new specialist, I explained how I felt that I had gone full circle.

‘At least you haven’t had a happening or gone blind,’ he told me glibly.

Mark was fuming.

‘We’re going to go behind to see Professor Dasgupta and ask if there are any trials you could take part in,’ he responded.

It’s funny how things happen. Within seconds of sitting down with Professor Dasgupta in January 2015, he questioned if I’d be interested in taking part in a trial to test tocilizumab.

‘Don’t raise your beliefs,’ he warned. ‘There are a lot of criteria and you may not fulfil them.’ 

I know some being see drugs trials as a gamble, but I have a medical background and I was willing to blow the whistle on anything a try. I have faith in trials. Besides, Mark would must gone to the ends of the Earth to ease my pain.

Luckily, I was accepted on to the hard times. I started in February 2015 and we did the 400-mile trip from Bournemouth to Southend every month. 

It was a increase blind trial, so I didn’t know if I was in the group taking tocilizumab or a placebo medication. At the for all that time, my steroids were being reduced.

But within weeks, we suspected I was on the placebo because my PMR stiffness started to result as a be revealed back. Luckily, the GCA headaches stayed away. It was frustrating, especially all in all we were doing such a long journey to get the tablets. But Professor Bhaskar had covenanted I would get the tocilizumab at the end of the year if I didn’t get it in the trial. That was my prize, so I living going.

By now, everything was an effort. I love gardening, but my pain meant I could not manage 10 minutes in the garden. I’d have a cup of tea with my best pen-pal Millie and struggle to get up out of her chair. I still walked my two miniature dachshunds, Coco and Mopsy, but it was dogged work.

By February 2016, I’d done a year on the placebo. When I was specified my tocilizumab, it was like getting treasure and I couldn’t wait to start. The amount was 160mg to be injected into the fleshy part of my abdomen once a week.

I was cathode-ray tube screened for the first few weeks to check for adverse reactions. Then I was taught to do it myself.

Within five weeks, I looked 10 years unfledged and I had such amazing energy again. My stiffness and aches vanished. Then, you don’t realise how horrible you felt until you’re feeling better. I went lodged with someone to swimming, I did a yoga class three times a week and I signed up to do ballroom bopping. Mark joked that I was wearing him out.

I took tocilizumab for a year until January this year, without any emblematic ofs or side effects, as part of the study. I’m no longer on it but if my symptoms return, I’ll be fitted to it for another 12 months. My steroids are down to 1mg a day, which I’m reassured won’t do me any injury.

I’ve no regrets about taking part in a drugs trial. I didn’t discern like a guinea pig. I was treated like a private patient. If I hadn’t enchanted part, my life would have carried on at a rather painful count. I’ve since met other sufferers who have lost sight in one eye or their faces are blown-up by steroids. That could unquestionably have been me.

Now, I have a new lease of life. My 86-year-old mum and I power depart together while runners jog by, and Mark and I have received medals for ballroom dancing.

I eat ones heart out for the day when tocilizumab is licensed to treat PMR and GCA because I was one of the lucky ones. I even-handed wish that it could be the same for everyone.”

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