Steroids And Their Side Effects

Steroids or corticosteroids are used to treat inflammatory conditions, and in the case of Pemphigus where the immune system attacks the outer layer of skin, they are the mainstay of medication until medical science can come up with something better.

They work by both decreasing inflammation and reducing the activity of your immune system (immunosuppression).  Inflammation happens when your body’s white blood cells and other biochemicals are doing their job of protecting you against infection such as bacteria and viruses.  When you have an autoimmune malfunction like I have, then the inflammation that is happening incorrectly isn’t turned off by the systems in your body that are designed to do this.  In the case of Pemphigus it means your own immune system starts attacking the outer layer of your skin and that’s a bummer.

Steroids (Prednisolone in my case, known as Prednisone elsewhere in the world) are prescribed for their dual action above and also for the fact that they work fast to suppress your immune system.  You pretty much HAVE to take them at least to begin with, but then they can be hopefully replaced with “steroid sparing agents” such as MMF or even antibiotics (Doxycycline) and vitamins if you’re VERY lucky.

If you’ve been prescribed steroids then you should know that they are horribly dangerous and you should be fully aware of exactly what you’re doing so you can keep an eye on changes to your body and prevent or alleviate other permanent damage.

Because steroids are so fucking dangerous (let’s not beat about the bush here), doctors will typically only prescribe them in small doses of 5-10mg, and only for a couple of weeks at a time.  For more serious inflammatory conditions they will prescribe them for longer, but also make sure you have regular blood tests to look for any damage to your body.

In the case of Pemphigus all the bets are off.  You’re going to get high doses for months and smaller ones for years.  This is because Pemphigus is a slow and nasty, painful and uncomfortable killer until it gets very fast through a skin infection and you’re dead.  The thinking is keeping the patient alive and relatively healthy is more important than dead, and there’s always the possibility of complete remission (don’t count on it) further down the road. What would you rather be?  Alive and crippled and on a lot of medication, or in a box in the ground?

I know my family would rather have me alive, but me I’m not so sure if my quality of life degrades to the point where I can’t see the point any more.  It’s there in the back of my mind, but something I don’t have to face today and hope I never will.  Complete remission or stability through less dangerous means is my first goal.  I hope I can make it to one of those points before too much damage is done by the steroids.

My personal dose as I write this (11th August 2017) is 60mg of Prednisolone per day.  At this dosage it’s working well and rapidly.  I see improvement every day.  At 30mg I seemed to be in a holding pattern with no or little improvement.  I am having weekly blood tests which I’ve chosen to do on a Tuesday morning at my local hospital when I know it’s quiet (you soon begin to learn these things), in order for the doctors to make sure I don’t have kidney or liver damage, or anything else unpleasant going on in my body that isn’t outwardly visible.  I feel I’m in good hands.

So What Are The Side Effects?

The most obvious one to me because it’s happening is Difficulty In Sleeping.  Now there’s a phrase to think about.  It’s only difficult if it’s unwelcome.  I love it!  I can stay up and work all night while it’s quiet (self-employed work from home) and have around 4 hours sleep the following morning after going for a nice brisk 30-40 minute walk and breakfast.  I’ve found it’s all I need.  And when I do sleep around 9.00am-1.00pm, it’s extremely deep and restful.  I wake up naturally, sort myself out and carry on again.  It’s good!  In fact about 3 weeks ago just after I started taking the lower dose of steroids I slept for 11 hours, and was totally conked out.  I have NEVER had such a good sleep in my adult life, or if I have it was in my late teens or early twenties.  For me that’s a positive side effect.

What’s next?

Depression.  OR the complete opposite.  Fifteen years ago 2002-2003 I had really bad work related depression.  Long story for another time.  I went through it without medication by choice as I’m in principle generally against taking any kind of assists unless it’s beer or coffee.  I used Cognitive Behavioural Therapy (CBT) which is a nice way of saying I kept myself busy.  It was then that I learned how to do things that most of us don’t ever do, and I used my skills in research to make money and sell stuff online.  Another time for that story.

So I know depression when I feel it.  It’s not feeling down, it’s something else and I’ve never really known how to describe it other than NOTHING makes it better other than time to deal with it.  You feel empty, hollow, no point to anything, why even try?  And I tend to bite if approached.  Earlier this year in April I was prescribed 30mg of steroids tapering off each week over a month by my GP, and I felt pretty good while taking them.  Two days after I’d taken the last one, I felt the depression take hold (you never really get over, you just learn to handle it) and I guessed this was a post steroid downer.  It lasted about 4 or 5 days and passed, but it was pretty bad and I wasn’t good company so I kept out of everyone’s way.  It would just make all of this so much worse if the steroids caused me depression, but I’ve been lucky and they’re doing the opposite.  I feel bright, alert, and like I could do anything I put my mind to do.  Watch out world.

Next up is Indigestion or Heartburn.  My doctor has prescribed Lansoprazole gastro protection to protect my stomach and intestinal linings from the steroids which you take 30 minutes to one hour before eating or taking the steroids.  I also make sure I always eat something when I take the steroids to further protect my system and this is usually baked beans on two small wholemeal toast (which I love as a meal, white bread is good too) or a big bowl of porridge.  In other words I have something not too big, but substantial enough to be a help.  I would also have anything stodgy such as a full english breakfast or 3 slices of well buttered toast, or even a handful of oven chips on a buttie or two (I love chips!  Not french fries, proper chips!), but I wouldn’t have something a bit wishy-washy such as cereal or fruit which are occasionally my breakfast choices during normal circumstances.  I need to PROTECT my system as much as I can.  It’s early days, but I think I’m doing the right thing on that front.

Related to this is Increased Weight.  Now here’s the thing.  I’m 57 and a bit of short arse at 5’4″ or less and the last few years I’ve really piled on the pounds.  I’ve always had a bit of a weight problem since I met my wife as her cooking is so stupendously good.  When I met her at 31, I was 10 stone, slim and good looking.  And here we are 26 years later and while there’s a hint of that devilish twinkle and the person I was, most of him has been covered up by this plumper guy.  Before I was diagnosed with Pemphigus Foliaceus 3 weeks ago I’d already started a new regime and been cutting back on food, eating better stuff for me and going for a walk every day.  My lifestyle up until then was largely sedentary and still is, but at least I’m going for that 30-40 minute brisk walk every day now and it’s paying dividends.

Let’s switch to kilos because that’s what all the cool kids are doing nowadays. 1kg=2.2lbs.

So when I met my wife I was 64kg (10st 1lb) which is pretty much perfect for my build and height – I’m small (usually).  The most I have ever weighed was about 5 weeks ago at 95kg (15st).  While that’s not morbidly obese, it most definitely is fat bastard class of weight for someone my size and 50% bigger than I’d ideally prefer to be.  (I put 9kg on within 18 months of meeting my wife.  That’s called contentment and happiness.)

I’m currently at a shade under 89kg as I write this and going down.  I’d like to hit 75kg to be okay with my weight, 70kg would be better and if I ever make it back down to 65kg (without it being caused by a terminal illness), I would be VERY happy.

5kg targets at time is the key I think.  Next target at 85kg.

Now both of the doctors who agreed to let me go onto 60mg of Prednisolone said the same thing, I would put weight on and wouldn’t be able to lose any while taking the steroids.  That was true when in April (4 months ago as I write this) I was on steroids for a month and my appetite ballooned as did I.  But I let it.  I’d read I’d put weight on and I let that happen.  I had some good meals and the 5kgs I’d just lost (not kidding) previously went back on again over the next 4-5 weeks.  I let it happen.

Not this time though.  When the doctors tell you you’ll put weight on through steroid use, then I can tell you that it’s up to you if you do or don’t.  It’s not magic, it’s science.  Popping a pill will not put weight on you.  Cramming food into your cram hole and sitting around will.  Eating less and higher fibre slow release foods like porridge and beans, while moving around more will allow you to get rid of the weight, not the other way around.  I’m proof.

If you want a tip as to how to stop yourself feeling hungry and filling your fat face, then I’ve found that sipping black coffee and refridgerated tap water fills you up and keeps the pangs away.  It means lots and lots of trips to the toilet, but being well hydrated is good for you.  And the coffee might raise your blood pressure a little, but the porridge if you’re eating (and doing a bit of exercise) it will counteract that and bring it down.  (Porridge really is near magical and will lower your blood pressure and cholesterol when combined with a little exercise like a 30 minute walk every day.  I can attest to that.)

Be determined.  If you can prove the doctors are wrong about weight increase, then you might be able to prove them wrong about words like chronic or incurable.  Fat has been linked to a malfunctioning immune system, so it can’t do you any harm to lose some if you’re carrying it like I am, right?

One last word about this.  If you’re dieting and taking exercise, you’re also DOING something other than relying on taking some tablets and hoping for the best.  Having goals and hope for alleviation of symptoms (or even remission) based on those goals will change your mood.  It may come to naught other than a slimmer, fitter you, but isn’t even that worth the effort?

Easy Bruising.  Yep, had that one.  I took a blood test three weeks ago (scored 10/10) and a few days later I noticed a bruise appear which then turned purple.  It’s almost gone now, but having taken another test this week on my other arm, I’ve just today noticed a slight bruising again a few days later.  Not really sure what’s going on there but not worried about it either.  Neither bruise is painful, just a bit ugly.

Muscle Weakness.  Not at the moment.  All is fine, and I’m going for slightly longer walks each day without aches or pains, so that’s good for me too.  Might this one be about willpower again?  I don’t know.

Mood Swings.  I do NOT have mood swings!  Yep, experienced that in April when I took them, but when you know what’s causing it, you can stop yourself, apologise for being a jerk, and carry on.  My normal state of mind is laid back and happy, but I’ve noticed that steroids can make me little more intolerant of people and I can change instantly.  As I said, if you’re aware of this, and know what’s causing it, it’s all controllable and you can make allowances for yourself so you don’t piss off your loved ones and the medical professionals that are trying to help you.  Everyone else can go to hell.

Water Retention.  I’ve not experienced this fortunately, and I drink a LOT of water.  The norm for me at the moment is to suddenly wake up an hour after falling asleep, drag myself to the toilet and then stand there urinating for Britain. Two minutes standing there is not a joke, and not normally something I have to do, so something’s going on there, but it’s manageable.  Two seconds after my head hits the pillow I’m out like a light, so not a problem at all for me.

Increased Risk Of Infection.  Yep.  Can’t do anything about that other than deal with it.  Stay away from possible infection, IF possible.  Me?  I’ve already decided no more takeaways or pubs or other public places for the time being.  (Maybe I’ll risk the occasional trip out, you can’t be a total recluse.)  It might mean my life gets a little quieter, but hey!  We have a thing called the internet.  Go make some online friends in another country preferably, that you never have to meet.  Of course I can’t stop the family bringing stuff home with them, but I can keep them away from me as they’ll understand what it might do to my poor, poor body.

High Blood Sugar Or Diabetes.  Because of my weight I’ve already been told I’m pre-diabetic before I was diagnosed with PF.  But because I’m determined to lose that weight, I like to think that I’m also keeping my blood sugar down.  It may be wishful thinking on that front and out of my control, but it’s worth a shot.

Osteoporis Or Loss Of Bone Density.  This is something that affects women more than men even without steroids.  Your doctor will prescribe some bone protection medication which is effectively vitamin D and calcium.  You can buy these at your local pharmacy so there’s nothing to stop you from doing this before you’re prescribed them.  It won’t hurt, just don’t over do them, stick to what the bottle says.  Then exercise and move around as much as you can.  This will slow the osteoporosis or maybe even halt it altogether.  Even my 30-40 minute brisk daily walk is better than sitting around.  Do as much as you can to help yourself.

High Blood Pressure.  Exercise.  Lose weight.  Eat porridge oats – I told you it’s magical.

Glaucoma. This is where you have a build up of fluid pressure in the eye which then damages the optic nerve and can lead to blindness.  I can’t help feeling this is related to high blood pressure too – I don’t know yet as I have to research it, but that seems to make sense to me.  My intention is to go to my local opticians every couple of months and see what they say – I’m overdue for an eye test, so I’ll know soon enough if that’s something they can test for there or if I need something done at the hospital.

Thinning Skin or other internal tissue thinness you can’t see.  A bit of a worrying one that as there’s things going on inside you that you just cant see or do anything about.  Again I think that probably losing weight, eating “heathily” and exercising is going to help, but I’ve no real idea yet if it will or won’t.  Sorry.  When I know more, I’ll post it on here.

Fat Face Or Round Face.  Yeah…  This is probably related to the thinning of the skin and the scoffing of the face.  Think about it.  If you put weight on because you’re stuffing yourself because the steroids are making you hungry and you’ve given up or got no willpower left, then… You’re going to put weight on in the form of fat.  If the skin on your face is stretchy because apart from taking the steroid tablets you’re also applying steroid cream to it, then your skin is going to get thin and the fat is going to take the path of least resistance and fill up that nice stretchy bit of skin that’s developed in your face.  Don’t let it.  Again, focus on weight loss and exercise to stop this from happening.  You can do it.  It’s your life and well being at stake.  Take control.  Don’t accept everything the doctors tell you as an immutable fact – they tell you these things based on common observation, so be uncommon.  You may not be able to, but at least TRY to prove them wrong about some things and maybe they’ll be wrong about incurable too.

Decreased Interest In Sex or loss of libido to be politer.  Well shit. Yes, that may be happening to me already after just a few weeks of steroids.  I might have to actually force myself to be more interested.  It’s a cross I’ll have to bear.  Maybe my wife will help me, she’s a good person and wants me to become well again.

Cushing’s Syndrome.  This seems to me to be a general term for a lot of the things I’ve described above or that you may have already been told.  But to the big list above, I’ll add reddish stretch marks on the thighs, stomach, buttocks, arms, legs or breasts.  Nothing you wouldn’t also get in a Dutch brothel I reckon.

In Conclusion, the side-effects to steroids can seem very scary.  I’m scared.  I don’t want bad forever changes to happen to my body or have one of the horror stories I’ve read online happen to me – you’ll find them if you look.  But I think if you go into all this with the right attitude and a determination, there’s things you can do to alleviate any of the bad side effects or symptoms of taking steroids.  For at least a while, and that may be all it needs.

If depression gets a grip on you though, and you give up…  Then I’m so sorry.  I really am.  All you can do is try to keep yourself busy and distract yourself from your predicament.  I know it’s easy to say don’t give up hope, but when depression gets its filthy claws in you, then that’s a very difficult thing to handle.  Get in touch with me if you like and we can talk.