This Lupus Life

I am the dancer and Lupus is my music. I want to make it look beautiful

Medicines, what we know and what we think we know

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I have spoken a bit about being treated with Prednisone but I haven’t really explained why or how that happened. I feel I need to really talk about this drug as a treatment for health issues as it is a influential on a person as the initial cause for taking it in many cases. More often than not you may not realise but when you are prescribed a medicine to treat and illness the amount of the drugs are very important. What I have seen just through general observation is that most people who take a chemical in to their body pay very little attention to what is does, how it does it and how much is needed. There is a perception with people also that they know what is best for themselves, and so can take what they feel best does ‘the job’ as regularly as they need to do ‘the job’, regardless of what labels, laws and professionals advise.

 

I suppose this stems partly from lack of awareness, or lack of desire to be aware, but also from the mostly sensible notion that every person has of their knowledge of themselves and what they need combined with their own past experiences. Combine this with what the general public consensus is for regular health checks with doctors, dentists and optometrists (most people only go when they actually think they need to or when the need seems dire). I speak about chemicals also, not just prescription medications as there is also a failure for many people to understand the way the body works with over the counter assistance you get from pharmacists, alcohol and inhalants and then, yes illegal drugs.

I just want to take a little rant (so to speak) as an example of this and just point out people who use Paracetamol. The package may say 2 every 4 hours. Most adults will go beyond that in dosage and frequency. Why? Because they simply don’t believe anything less has an effect. I know many who take 4 Paracetamol, then 2 Nurofen and a glass of wine. It seems they link this emotional and mental assumption in to the depth and extremity of their pain which may in fact be mostly imagined. Or perhaps they have not put enough time and faith in finding alternative ways of handling pain. I know from extensive personal experience the more you focus on the pain and believe to be acute and aggressive, the more it will seem this way. Ignoring it passive aggressively has much the same effect. The pain is definitely there, don’t get me wrong, but there are some other ways to forego extreme over medication for what may actually be a simple pain.

 

I want to express here that this is an opinion of myself from my own personal experience. I do not have documented research or any qualifications to recommend anyone else agree with or adopt this view point. I just want to suggest that there are alternatives to dangerous use of chemicals when you may not always need to. 

 

I say all of this for a very particular reason. The Paracetamol was used as an example because a friend of mine is in hospital needlessly. They abused Paracetamol. They took ‘just a few more than they should have, just a bit more regularly than was recommended’. The period of time they did this was not long, but they were recovering from a cold and so their body wasn’t doing all that well. They tortured their kidney and liver. It could not cope with the extra drugs, mixed with alcohol and antibiotics. The trouble was the pain from torturing their internal organs didn’t happen until a few days later and by then they had done some serious damage.

There is a reason the labels are there and the doctors advice is recommended when symptoms persist. 

No for me. I am on Prednisone again, as well as Pantoprazole and Imuran.

Prednisone (or Prednisolone or any pharmacy name for corticosteroids)

You may recall I think it is an extreme medicine and I hate taking it. But I know it helps. I am grateful it helps me because I know of a lot of people with SLE that are made VERY sick with it or don’t respond to it at all. I have masses in my brain for the third time in a year and the only thing that has helped my body to resolve and heal itself is this drug. I won’t call it a wonder drug. I think that sounds too positive. I armed myself with positive thoughts before I started taking the pills. I am on 50mg, I have been for 2 months now. I don’t think about my weight, I can think on that later. I stick to a strict eating schedule. I purposely don’t let food in to the house that I can’t resist. My birthday was hard-SO MUCH CHOCOLATE!!!

I have a walking goal for each day and I am trialing counting my calories, although I don’t know how I feel about this concept. I cannot stick to a raw diet, my body craves carbohydrates too much and the kidney stone incident threw any hope I had at a regular diet out the window. I stagger my 2 litres of water each day. My skin hasn’t broken out as bad as it did at the start of the year, perhaps that is because I haven’t had any take away food, confectionary, potato chips or biscuits in 3 months. I never drink soda or fruit juice so there goes my sugar intake. My weight increased by 6 kilograms but I am slowly moving that down with a higher fiber diet, more calories out vs in and more snacking on green leafy food, not just sticking to my  3 meals a day.

 

Pantoprazole ( Azathioprine or Omeprazole)

This is a common medication that works alongside corticosteroids or any similar drug that poses significant potential to harm the stomach lining. Prednisone should be taken after a decent meal when the stomach isn’t empty. It will quickly cause ulcers, holes and damage in the gestational track if you aren’t careful. So this type of drug is taken with food, before the Corticosteroid or similar, to assist the stomach prepare. That should show how bad an ulcer or damage in the digestive tract can be. BAD. When I’m off the Preds I will finish with this too. I must say, for anyone reading this who isn’t on Azathioprine or a similar drug, it may not be irresponsibility on your doctors behalf. They either may have given you a drug that I don’t know that name of, your steroid dose may not be such that damage is a possibility or they trust you. But as an adult who is given the responsibility to take their own medicines and manage their own illness, you are also responsible for knowing what each of your medicines do, what their risks are, and how to correctly administer them.

 

Imuran

This is my wonder drug. This is my new best friend and life companion. Together with Plaquenil we will take long walks on the beach, embark on many yoga retreats across the globe, explore the intricacies of numerous fabrics and photographic styles and international recipes. I think we could be happy.

Imuran doesn’t seem to have too many side effects. It is a long-term medication that only poses a risk if you jump into regular usage on a strong dose. So I am titrating in to it, hence the Prednisone.

1 month on 50 mg Imuran, then 2 100 mg, then on to 150mg

2 months on 50mg Prednisone, then down by 12 mg every fortnight. ONLY if the MRI is showing reduction and resolution in brain masses I should be off by Christmas

Pantoprazole until the Prednisone is gone

I feel like I always do on Prednisone. I look forward to the clarity and seeing the Jessie of my former self emerge from hibernation to be at peace with the world once more.

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Author: Chevron Spots

I am in my mid twenties and fighting my battles to discover who I am and where I fit in to this zany, beautiful world. I was diagnosed with Lupus in in 2008. This takes up most of my focus, as I want to share the experience of trying to live with and rise above chronic invisible illness, so to speak. I would like to stress very much the information regarding medications, medical procedures and illnesses are discussed from my point of view, and with my understanding, colloquialisms and metaphors. I do not attempt to be legally and precisely accurate for the general population, rather I try to be emotionally and descriptively true to my experiences. I hope I can help in understanding others with chronic illness by providing one more personal recount of just how spontaneous and difficult these lives really are. One day I hope to visit every continent, climb some pretty high mountains, sleep in an ice cavern, marry a wonderfully understanding man, have children and teach more children. Mostly, I just want a simple life, you know the house with a husband and kids. Oh, and no pain.

2 thoughts on “Medicines, what we know and what we think we know

  1. Pingback: Exposed | Nitya Nata

  2. Pingback: 2014 vs 2015 | This Lupus Life

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