Prednisone and it's wonderful side effects

I'm feeling a little guilty cuz I haven't done much on the t-shirt or the book front, but I've been really trying to get out and get stronger, and somehow the day's hours just slip away into oblivion. I keep wanting to have a sleep in the daytime too because sleeping at night is absolutely impossible (one of the pred side effects I hate the most) but again, I have no idea how it is possible for each day to slip away so supersonically and stealthily, but they do.

I finally coloured my hair today. The three strands left on my head (I'm exaggerating, but not by much) hadn't been coloured since before I got sick, and my hairdresser refuses to touch me while I'm on chemo, and I was starting to look a little witchy - just in time for Halloween. So thanks to my beautiful sistah, I now have a continuous brown hue around my head. Feeling a little better on the self esteem side of life but there's a loooooooooong way to go before I feel like my old self again. The trick thus far has been to avoid mirrors and pictures and any reflective surfaces, cuz on the inside I feel like Marta but on the outside there is no link between what I feel and what's there.

So I was talking to a friend today and was thinking about how little people know about the side effects of prednisone and or cyclophosphamide. So here goes...

Prednisone:

1. The most commonly known and most obvious is the bloating, moon face, and weight gain. This is for many reasons including water retention, the most ridiculous munchies you can imagine - a constant thought in my mind is food, and how to battle the urge to be constantly eating. It also plays a number on your muscles (muscle wasting and muscle pain - the heart is a muscle so that's something to keep an eye on), tendons and ligaments, and combined with being sick and not being able to exercise, this creates a nasty little circle - pardon the pun.
2. A false sense of increased energy on higher doses, and withdrawal and very low energy on lower doses during weaning.
3. Mood alterations - heightened moods in either direction (including what we Weggies call 'pred rage') This happens for a few reasons, but one of them is that prolonged high dose of pred stops the adrenal gland from functioning and in fact atrophies it - which creates a hormonal imbalance in the brain/body.
4. Insomnia - your body's tired but your mind wont let you sleep. This is the one that's been driving me batty since the beginning.
5. As well as having potent anti-inflammatory properties it is also an immunosurpressant, so normal things that people's body deal with on a regular basis without the body's owner even knowing are more tricky in this world. Thinks like thrush in your mouth, plantar warts, a cold, a cut or scrape on your skin and many many more.
6. An altered state of mind. Spacey and hyped up at the same time. Forgetfulness (way beyond what I thought was bad before I got sick) and hyped up all the time - empty running thoughts that are constantly going on and no way of putting on the brakes.
7. They're nasty on your stomach, but since I have no problem eating I always have food in my stomach before I take them, so - touch wood - I haven't experienced any problem with that so far.
8. My hair is stupid. The normal side effect of the steroids is to give you extra hair where you don't want it... which is happening, but it also changes the texture of my head hair, so what little I do have left (the cyclophosphamide - chemo drug - makes it fall out) is super scraggly.
9. Thins your skin - permanently.
10. Gives you funny little marks on your skin. I have a rash on my chest that the doc thinks is pred induced. Also those nasty little skin tags, yup, they like pred parties and are the guests that overstay their welcome.
11. A hump on your back. Right at the top of your back by the neck. It's really cool. Apparently the same thing happens on your shins, but I haven't noticed that yet.
12. Plethora - when you can see the subcutaneous vasculature because of the thinner skin - especially noticeable on the face - make that the moon face.
13. Stretch marks - I thank God this hasn't hit me yet, but with this it could be around the corner any day - apparently due to the thinning of the skin pred stretch marks can be the worst and have the lowest chance of going away to any degree.
14. Decrease in bone density and strength by limiting calcium absorption and altering the bone growth mechanism. This can cause brittle bones and osteoporosis.
15. Avascular necrosis - a rare but possible condition where the ends of certain bones where the blood flows in an opposite direction to most (hips, heels and hands) can die off. Not a good thing.
16. Eye problems. Glaucoma and cataracts can be induced by long term pred use.
17. Increased blood pressure
18. Increased risk for diabetes
19. and how could I forget the sweats... oh those sweats that creap up on you anywhere and soak your face and your clothes, yeah, there's the sweats too.

How's that for a barrel of monkeys?

So there, a miracle drug that treats so many things and treats them so well, but has this great list of side effects that make you look and feel your best - ha. It's what (along with cyclophosphamide - and in Wegener's Granulomatosis' case they have to go together - hand in hand or it doesn't work) is keeping me alive and able to hang out with the people I love, so side effects be damned, I'm upright and watching my family grow.

I was going to write about the side effects of the cyclophosphamide, but I've been typing for way too long now so maybe some other time.

Prednasone under 20mg

Arrrrrrghhhhh!!!!

I've been told

I've been told to do another post, so here goes. I'm at 17.5mg of the nasty stuff - woohoo! Feeling goodish. Went for a walk with Hana (the older version) and she asked me what I see in the future.... like a year from now. I told her that I see life being back to relatively normal - with a few minor modifications. Back to work, back to playing outdoors regularly, back to being me. My Weggie friends would cringe to see this, but I'm putting it down anyways. Sorry guys. Gotta dream. I know I'll have to be vigilant, I'll also have to minimize any stressors from my life as that tends to cause flares, I'll also have to keep getting blood work, but hopefully low to no meds, and strength back at least enough to do the stuff I love doing.

Last week I had a horrible brain week. I'm blaming it on the pred. I took Hana (the younger version) to gymnastics one day too early and dance one day too late - both on the same day. Had her dress up in costume twice in one day just to let her down - psych! The second time, when she realized it was a no go AGAIN, she sat there in her tu-tu, looked at me, then dug her face in my neck and started to cry the saddest little cry ever. Talk about feeling like a horrible mom. Today I've felt a couple of moments of 'pred rage' - just moments - seconds really - then I catch myself, but it's almost like PMS. You know it's happening and the silent observer inside sees it happening but you can't do anything about it. I've read on the forum that the head games that pred plays happen more so when you're weaning and get below 20mg. So here goes. Bastards beware!!! Pred Biatch on the loose.

I think I was wrong

When I was panicked last week about flaring. I think I was wrong. Thank goodness!!! The symptoms I have been feeling and freaked out about (sending a panicked fax to my rheumy and having a bit of a panicked visit with my GP)  have all calmed down. I'm holding off going down on predi for another week just to make sure, but I'm hoping that it was just another blip. Hopefully Dr. Button doesn't start to see me as the 'boy who cried wolf' - this is my second freak out with weird symptoms. At least I got to remember where exactly the pain in my head was. I will never forget now.

What do you expect though, they've put all the responsibility in my hands without really telling me what to do if something odd happens. I will talk to Dr. Rheumy about that on our next visit.

The important thing is that it has not taken a turn for the worst, and is in fact much better than a week ago. Now it's time to concentrate on the good things and the positive goals on the horizon.

Talk soon.

What up?

Soooo, I guess the thing with being a Weggie that is a commonality amongst most of us is that uncertain feeling I spoke of earlier. I've been having a return of the old symptoms - not to the same intensity as before I got diagnosed - but they're there nevertheless. It's funny actually, 'cuz just the other week I was saying to someone how I don't remember the location of the pain I had in my head... I remember the unreal, crazy, ridiculous intensity of the pain, but I don't remember where on my head it was. Well, ask and ye shall receive! I now remember exactly where the pain was because I have it in the same places. If you're curious, it's all over the place really, but the epicentre is in my ears and it radiates out in all directions. Temporal to sagital, occipital, mastoid to mandible (that one feels like a bad toothache) and of course there is the frontal / sinus area above eyes, and below around cheekbones. Cool, hey? My nose was hurting too the other day quite bad, and all I can think of is, how fast do the granulomas eat away the delicate bones of the sinuses when this thing is active and thus, how long before my nose caves in if I'm flaring. My joints are also hurting along with my chest below my ribs (which was owie when I went into Emerg that fateful night).

I'm really really really hoping that this is all because of the prednisone wean and not a flare. I just read some stuff on my 'go to site' where all my super wise Weggie friends manage to bring me back to reality when I have a panic attack in my head that the joint pain and some of the other stuff I've been feeling might be associated with the wean, so I'll hold off a little more and see what happens. The problem is that if I'm active again, the trick is to catch it ASAP so that A) the damage done to the body is minimal, and B) we don't have to start the treatment from scratch again. I really want to be off these drugs. We're talking about getting off the cyclophosphamide in the next month or two and switching to something less toxic. Will still be on chemo daily, but not the 'super chemo' that can mess you up pretty good.

Funny where life's path has veered to in my situation. Who woulda thunk that these would be the crazy thoughts going through my head five months ago? I had a completely different set of crazy thoughts going through my head at that time. Thoughts like 'hope I do well on that web job interview', 'how am I going to get Hana to gymnastics today?', 'can't wait for the weekend so that I can go skiing, and I sure hope is pukes snow on Friday night', 'what am I going to make for supper tonight?'... you know those kinds of crazy thoughts.

I'm baaa - aaack

Just got back from the first holiday since THE EVENT, you know the one...

Shuswap Lake (Blind Bay / Eagle Bay area) was great for us, the smoke cleared up as if by magic. The rain came in just before us to clear things up and then it got nice for a few days anyway. Went with mom, dad, Wendy, Dave, Sadie, and my beautiful peeps of course, Bri and Hana. Food was great, company was great, I got to do stuff and be around people so that the constant topic of contemplation was pushed aside for a while. I still had moments where I was trying to figure out what was behind the odd stuff I would feel, but distraction is a good thing.

I went water skiing - one flip - but got up nevertheless. Yeah, I did. Dropped a ski too and got in some turns. I really did and had a great time doing it. In the back of my mind was the imagined voice of Sangye (I've never heard her talk, but have seen her words of wisdom quite a bit over the last couple of months) telling me about my ligaments and joints and how prednisone messes them up. I was imagining a Monty Python moment where both my arms get pulled out of their sockets by the boat as I say "GO". "Oh, I'm alright, it's just a flesh wound." BUT that didn't happen and unfortunately for you, my arms and the middleman between my crazy thoughts and the keyboard, are still attached.

I think the most dangerous thing I did was to go to the outdoor water slides with the families and take Hana down the kiddie water slide into the kiddie pool. Healthy people are squinting their eyes right now, trying to figure out what the heck I'm talking about, but all of us immunosurpressed Weggies are saying ... 'ahhhh'. Swimming pools with a number of children in them are a very creepy place indeed.

The calm before the storm.
Hana and me on the boat before the big storm (after water skiing).
An hour later the scene was quite different - not in a good way.

Many other exciting things happened while we were there, a golf game (9 hole) with Bri and Dave of all people. Yes, Dave. Getting caught in a North Atlantic storm in our rented speed boat. I had no idea that a lake can create such huuuuuuge waves. I have to say that my little girl was awesome and behaved like I couldn't have hoped for or predicted. That was an expensive day as Brian lost his prescription sunglasses during that marine experience. Watching the salmon run was mind blowing - what a life. We have nothing to complain about when you compare yourself to that crazy salmon. The Enchanted Forest was great because it had witches, lots and lots of witches. Boccie, Frisbee, a lot of rock skipping, and of course tons of great food - which made the preddi in me very happy.

Needless to say, my plans of playing with the book idea during holidays didn't happen, but I will be putting some thought into it in the upcoming weeks.