This Lupus Life

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

Prednisolone for Autoimmunity

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I’ve been siphoning through what I know of the different pain management drugs for Systemic Lupus Erythematosus (SLE or Lupus). The order I have been assessing them has been from ‘lowest’ risk and I have been building up to what I see as the two ‘riskiest’ treatments in terms of usage and effects. By risk I refer to the potential for physical, emotional, cognitive and psychological side effects. These may not all pose the same risk in the same area or way, but they are all ones that doctors monitor closely over time, sometimes for legal reasons as well as health.
The one I will cover here is Prednisolone.

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Prednisolone

Prednisolone is a corticosteroid. A corticosteroid is a hormone of the adrenal cortex, or other natural or synthetic compound with similar activity. The body produces a small amount of corticosteroids on a regular basis, but in some circumstances a larger amount is needed than what the adrenal glands produce.

Cortico – Indicating the outer area of an organ or tissue.
Steroid – Any of numerous naturally occurring or synthetic fat-soluble organic compounds.

Quickly here I would like to identify these glands.
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Renal: Kidney
Gland: Hormone and chemical secreting organ.
So they sit on top of the kidneys and create/ secrete chemicals and hormones through the kidneys.

As I said, we create a small amount of steroids, in a range of compound forms on a regular basis. Progesterone and testosterone being two many of you will be familiar with, but not the only naturally occurring ones.

Corticosteroids such as Prednisolone do this clever ‘trick’ where they prevent and reduce inflammation and the immune system in a way that many other drugs do not, as well as their other specific ‘tricks’.

It is taken orally daily, preferably in the morning. The dosage depends on how dire the circumstances of the individual are and how much ‘control’ they need to take to overthrow that nasty dictator that is your misguided immune system or such health concern.

It is a relatively powerful drug and so mere milograms can have a significant impact on the functionality of the body. When I was treated for Idiopathic Thrombocytopenic Purpura I spent four months on 150 mg before titrating (weening) down 25 mg at a time. The rest of that year I sat at 50 mg, which fluctuated between 0 and 100 mg periodically. More recently my fluctuations for Cerebral Vasculitis consisted of the more realistic doses of 25 mg to 5 mg. Traditionally I begin at 100 or 50 mg and the doctors work from there.

As well as orally it can be injected in specific quantities into vocalised sites depending on the longevity and nature of the ailment and the effect it has on the patient. I have yet to have an injection, so cannot speak to the effects. Orally though is a different story.

Corticosteroids work hard for the money, so hard for it honey. I feel that if superman did drugs he would be doing ‘roids. They energise you. In every way.

Imagine this:
Your heart beats triple time. So you need to eat for a pride of lions, at least. You need contact but you think as fast as your heart beats. So holding a conversation is difficult. As the response is meeting your needs from all that time ago (5 seconds). Your moods are volatile because this unbalance is constant. And no one is moving thinking speaking feeling as much as you. They are at normal speed. Which isn’t satisfying The typical emotions you’d experience in a day/ week have exhausted themselves by lunch with your body. BUT NOTHING STOPS!! You still have half the day to survive. So you cycle for 2 hours, eat a chook and leg of lamb, four burgers, a bag of apples and ‘some’ chocolate (like a tray of Tim Tam’s). Maybe you run for another hour (How great is this?! I’m well again!!) Then your exhausted thus depressed thus eat a tray of Tim Tam’s before dinner. Why? Because PREDNISOLONE. Even if you’re aware and regulated you can be driven insane by the hunger and energy and mood swings.

Trust me, I’ve lived through this. I know. As you ‘ween,’ or titrate down, off the drugs you feel the maddening effects wear off but the haunting hollow feeling they leave can be as bad.
There are periods where I’ve not realised I’ve experienced emotions because I haven’t been left raging or crying afterwards. Suddenly the person I’d scared off ‘because their voice annoyed me’ is dear to me again and I’m filled with regret at my own wrongdoings. I go almost entire days without eating because that gnawing ghoul of an appetite isn’t leading me towards the fridge or pantry. No longer can I do any of the physical activities either. I’m once more bound to my bed and couch, dreaming of the great wide world beyond my front door.

A summation of what I have crazy-rambled above is that this drug can increase the appetite of the individual to a dangerous level, which needs to be closely monitored. This is the leading reason for frequent, extreme weight gain. It enhances moods and can lead to dramatic mood swings, with severe sporadic bursts of anger and depression being prevalent. The energy level of the individual is heightened and, due to the lowered inflammation and subsequent lowered pain, the individual is able to perform activities previously not possible. This too needs to be monitored as the subject comes off the higher doses so there is no tissue damage. With the energy level always heightened sleep deprivation is common and often needs to be controlled with sleeping drugs.

Other long-term side effects relate to bone density and bone marrow production. The bones can become brittle and weak if the person remains on an unnaturally high dose for a prolonged period (this is determined by your body size, health practices and naturally occurring levels of corticosteroids). I cannot say much about other concerns, as I do not know these. I am sure there are more. I do know that is not recommended to try for or become pregnant whilst on a high level of this drug.

I’m not a medical professional. I’m not here to tell you about what prednisolone is like from a doctors perspective. All the websites do and it never helped me. I can only say what I know from being on it and convey to you that my experiences are my own. They may be different for you. You have to go in to this drug with your eyes open, communicating every possible scenario to the people around you and open yourself up to allow people to tell you when to sit down and that you’ve gone too far. And to hold you out of the kitchen. DON’T BUY SNACK FOOD WHILE YOU ARE ON THIS. SNACK ON FRESH FRUIT AND VEGETABLES. 

It always heals me. It always helps. I know I need it sometimes. I wish I didn’t. Whenever I learn I’m beginning the ‘roids again. I cry. I know I must need them. I’m not so mistaken that I believe I know better than my doctor. I realise always that my body is just that unwell sometimes. But it is a sentence to torture for me. And I walk into my cell with my head ever high, knowing that I will emerge the victor.

One body.
One life.
A long, long life.


I have linked my official information to the websites I sourced them from. I am not a medical professional and I apologise if the information provided if not accurate. Please advise me if you find any inaccuracies.

The sources were:

medicine.net

drugs.com

rxlist.com

mayoclinic.org

arthritisresearchuk.org

 

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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.

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