Medication Wars – The Patient Strikes Back.

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I think I’ve made a monumental leap forwards in coping with my mental health issues over the last 5 years. However, during the last 12 months I felt like I kept hitting a brick wall in terms of making further progress. The thing with me is that I am never satisfied with ‘good enough’. I will only stop trying to improve my situation when I feel as though I have the best possible outcome. As far as I could see, the brick wall was the physical health problems I have – Neutropenia and M.E. I don’t think I have truly accepted until recently how utterly depressing and miserable it is to live with them. If the causes of my depression were on a pie chart, these illnesses would account for half the pie.

I knew I was not going to live a happier existence unless one or both of the illnesses was minimised to a smaller sized portion of pie.

In my last blog, I spoke of devising my own treatment regime for Neutropenia, which contradicted advice given to me by doctors. My way proved to be MUCH more successful *smug face*.

For the last 15 years, this has involved taking injections with horrible side effects, so that I can minimise my risk of infection and not die from said infections. I take the injections at weekends because they are so debilitating; if I took them in the week I would not be able to work. The side effects include nausea, vomiting, bone and muscle aches, headaches, exhaustion and an overall feeling similar to having flu.

When I first started to intercept the cyclic pattern of my white blood cell count, I took 3 injections every other weekend which gave it a massive boost. I stayed relatively well, but my weekend was obliterated. It was a less than exemplary situation to work all week, be fucked all weekend, then work all week again. I had to try and do all my chores, see people, maintain my relationship and chip away at my writing goals in the good weekend. I missed out on daylight, exercise, interaction, nights out, hen nights, weddings, christenings, shopping, parties and other events if they were on the injection weekend. I entered a book I was writing into a competition and won a weekend residential writing retreat, but couldn’t go on it as it was an injection weekend. There was no cash prize alternative.

As the years went on, my resentment and bitterness grew. About 5 years ago, I decided I couldn’t be arsed with losing whole weekends any more. I decided to conduct some further experiments with my medication and over the next 6 months managed to get down to 1 injection per weekend. I took it every Sunday and dropped working Mondays as I still felt bad the day after. So I was losing 2 days a week but at least every Saturday was my own. This was slightly better but it has been a bastard if I want to go on a trip, visit anyone or if anyone wants to to visit me. I can’t go away for a whole weekend as I’m ill on the Sunday and it’s a waste. I’m not up to having guests for the weekend because I can’t cope with them when I’m ill on the Sunday.

As bad luck would have it, a lot of my friends and family are not based in my hometown and it’s difficult to see them because of the weekend injection issues. Luckily, I only work in term-time and can see people in the holidays, otherwise I would go properly fucking mental.

I’ve estimated that since I got diagnosed with Neutropenia in 1998, I’ve lost approximately 1,200 days to feeling ill with injection side-effects. Then there are the actual illnesses and infections I’ve had on top. I was going to work out a separate figure for those, but calculating the first sum has broken my heart somewhat.

I’m now at a point where I can’t be arsed losing 2 days a week any more and feel up to another round of experiments and tweaking my medication. My doctors never inform me of any updates or suggest anything new, but thanks to the miracle of the internet and Facebook support groups, I am fully au fait with improvements in the world of Neutropenia.

It seems my U.S Neutropenic friends are able to take the injections I’m on in a very small daily dose, so small that the side effects are greatly reduced. This has been widely recommended and supported by the Severe Chronic Neutropenia International Registry, who are based in Washington, USA and are currently overseeing developments in treatment.

Sadly, these injections are not available in the UK, but that hasn’t stopped me trying to get my paws on this daily dose booty for about a year now.

I’ve been given the knock-back by five different consultants last year, who have refused to even look into it for me. One hinted at costs, but that seemed to be the only factor I could see which was realistically hindering my progress.

I was assigned a new consultant in January this year and finally, I seem to have found someone keen to support and help me with my medication issues. He concurred that there was no daily dose injection in the UK but offered to try and find a smaller dose of a bio-similar medication to the one I am currently taking. By the power of Google he found one in 5 minutes! But, the hospital wasn’t licensed to stock it so he had to put in an appeal to his managers.

Lo and behold, the entire haematology department is not shit and my request was authorised!

On Sunday, I had one of my new injections for the first time and I am glad to be able to share this special moment with you. The dose is approximately a third of my old injection, so I’m taking a risk in reducing my medication. However, all the improvements in treatment that I have achieved thus far were as a result of risk and experimentation.

I’ve still had side effects. But I managed to write a rough draft of this blog and clean the bathroom. This is a first for an injection day!

I’m excited and hopeful.

However, I won’t be stopping until I’ve got the drugs the Americans are on.

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4 responses »

  1. Being able to clean a bathroom – this is some awesome progress:)

    seriously – I hope this continues to go well. it’s amazing how the drug industry differs from country to country – and their control on patents….. I am not a fan of the industry – BUT – I – we do need them.

    hugs to you:)

    • Thank you! Indeed it was a momentus occasion to be able to clean the bathroom! Nothing gives me greater pleasure than a shiny sink.

      My thinking is that the USA had McDonald’s and Coke before the UK, so maybe the medication will filter over here the same way…

      Hugs right back at ya!

  2. This is such an exciting time I am so excited for you. I know it has taken a lot of hard work and determination to get to this point. On your comment above I think we should swap ALL the McDonalds in the country for these injections.

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