December 1, 2012 § 16 Comments
So, here I am, drugged up to he eyeballs on immuno-supressant drugs (AKA prednisolone and methotrexate) and I get a cold.
Immediately I am panicked: Visions of it turning into pneumonia and me spending Christmas in hospital.
I slept for around 20 hours on day 1. Day 2 I slept for about 12 hours. Day 3 I’m better.
What on earth!
My partner, who kindly gave me the cold in the first place, is still, nearly two weeks later, coughing and spluttering with the thing. And yet, here I am, no cold, having fought it off, god knows how, because my blood tests (which I have to get regularly while on methotrexate) show, for example, my leucocytes (which fight off disease) are low.
So there you go, a cure for the common cold, immuno-suppresants..
November 19, 2012 § 19 Comments
I was started on 50mg a day of the corticosteroid, prednisolone when I was first diagnosed with dermatomyositis in early June of his year. Well of course, I can’t stay on that dose for too long because of side effects such as osteoporosis. So since around late August I’ve been tapering the dose and factoring in the steroid sparing drug, methotrexate. It has worked pretty well. My disease is in remission because of those drugs.
So here I am, nearly 6 months into taking prednisolone. It has had it’s ups and downs; It has gotten the disease under control, but it has made me look like an advert for moonpig.com with a big round moon face. I’ve put on over 2 stone in weight. It has given me stomach pains. I’ve got osteopenia in my hips. I’ve had heart palpitations and tachycardia because of the steroid. My sleep patterns have been adversely affected. At one point I was also borderline diabetic, but got that under control through dietary changes. My once excellent long vision, is now very blurred. I have lumps and bumps in the strangest of places. It has also left me prone to infections, which, so far, touch wood, Ive managed to avoid.
On the plus side, I’ve felt pretty happy. Steroids like prednisolone are mood elevators and for the past 6 months, considering I’ve had a pretty awful illness, I’ve been a happy, chirpy girl. Until now that is…
This week I’ve tapered down to 20 mg one day, 0 mg the next. Suddenly my mood isn’t so positive and the dark has set in. I feel lost and angry about my life and how it has turned out. I feel like I’m the worlds biggest underachiever. I’ve got to get out of this funk and think how fantastic it is that I’m now on an average of 10mg of prednisolone a day after being on 50 for so long. I’ve got to keep that positivity and remember how I felt when I thought that this disease might take me, but it hasn’t. It isn’t easy though, when you look in the mirror and you hardly recognise yourself from a year ago. How do those positive people, keep so positive?
November 2, 2012 § 4 Comments
I’ve been having these really odd side effects from, I assume, the prednisolone (could just be a manifestation of my own personal craziness of course). I thought I’d share them with you for your amusement.
Crazy side effect 1: Spangly light beams from my eyes
Yes you read that correctly. For a few weeks now I’ve had this really odd feeling that my eyes are shining, spangly light beams out of them. It sort of makes me feel like I’m some sort of super hero, ‘Spangly light beam woman!’
I might make myself a costume with a big S on the front…hmmmm…actually I think that one’s already taken by some other (less powerful) super hero.
I quite like this side effect, I must admit, however, like all good things, it seems to be coming to an end… I’ll miss you spangly light beams.
Crazy side effect 2: Comedy hands
I know this is going to sound like I’m mad as a bat, but read on, as this is really how it feels.
Unlike spangly light beams, which is a daytime phenomena, my ‘comedy hands’ seem to only manifest through the night. I wake up in the night to feel like my hands have grown massively in size and are very heavy. It’s such an odd feeling. It’s a bit uncomfortable. My hands feel like they are several times their normal size and clumpy and heavy. Eventually it goes away, but it is THE most odd of feelings. Again, like my spangly light beams, this effect seems to be going away as Im tapering the prednisolone.
It does make me want to sit up in bed and put my hands out, in jazz hands style and sing the “LumberJack Song” (you can’t help but love Micheal Palin).
As far as side effects go, these two are pretty trivial, but I do wonder what the steoids are doing to my mind to make me feel this way, now that is scary.
October 27, 2012 § 5 Comments
Well things this week haven’t been too bad. After chemo 4 I felt pretty awful for the following couple of weeks so after chemo 5 I was expecting pretty much the same. Thankfully it hasn’t been as difficult as I anticipated. My mouth is a lot better and while I get nauseous quite a bit, it is currently manageable. I also managed to get through the week taking the dreaded steroid meds – I hate these tablets most of all and for the last couple of days have left them sitting on the bench until I built up the nerve to finally take them. If you don’t manage to swallow them all in one go they leave a dreadful taste in your mouth – so the build up is really about making sure I can get them down in one go. Hopefully that is the penultimate dose – only one more 5 day treatments after the next chemo.
The chemo smell is pungent. It has got to the point where I think I smell all around my house. I think it is going to be one of those smells I never get rid of. God forbid !!!!!!
With the weather warming up my body is starting to feel a bit more energised – at last. I went for one decent walk this week and while it was pretty sedate, felt exhausted the day after. Needless to say I haven’t done quite so much walking for the rest of this week. Although I did do a short one today to go to my daughter’s school fete – it was about my limit though.
I’m hoping things continue to be ok over the next week – with only one more chemo to go I can see light at the end of the tunnel. After that I’ll get a rest from al the meds for a couple of weeks and then the tests will start again to see where things are up to. I’m almost nervous to be too positive. I have no reason to be otherwise but given how the year has played out so far, I’m a bit cautious when it comes to thinking things will work out just as I planned. I guess we’ll see in a few weeks.
Also – got some more hats this week. They really are terrific. I must take some pics and share them with everyone.
October 19, 2012 § 2 Comments
I went to the specialist dermatomyositis clinic at the Royal Victoria Infirmary the other day. I am incredibly lucky to have a specialist clinic, so close to where I live for such a rare disease. It is probably because my neurologist has a special interest in myositis: Whatever, I feel quite lucky.
And with dermatomyo-shite-is you get two for the price of one, so I see both a neurologist and a dermatologist. The dermatologist checks out my skin for any signs that the derma part of the disease, i.e. the rash, is causing any trouble. Fortunately for me it is almost gone, apart from some faint traces of it still visible on my hands: Apparently, the hand rash is usually the last to go.
The neurologist tests my muscle strength and also decides upon any changes to current treatment. And it’s the neurologist (bless his cottons) that has decided to taper the prednisolone, so I now have, 30mg one day and 0mg the next.
I actually shouted “YIKESY!!!”, when he announced I would be taking 0mg every other day, at which he exclaimed, “why yikesy?” To which I said “because it’s scary…MAN!”.
Anyway, Ive been on this regime for a few days and I can report that I seem to be getting a delayed effect. On the day I take 0mg prednisolone I am actually not too bad, but the next day, urgh, Im incredibly tired, have more significant pain and feel nauseated – pretty bad when my sister in law made the most amazing vegetarian, gluten free, trifle for us, which I have named ‘The Trifle of Delight’ as it looks so good.
However, I will persevere. It’s not like the last time where I was incredibly ill and had to go back up to the higher dose, that must be a sign I’m improving too. The good thing about this dosage is that it is under the magic number of 20mg a day (averaged) so I’m hopeful some of the side effects of the steroid will abate, in fact the neurologist said some of them should, not all, but some – let’s hope that means bye bye Moon Face.
October 16, 2012 § 17 Comments
It’s about time we talked about the horror of waking up one day to see you’ve turned into a pig, well sans curly tail, but it’s only a matter of time before the full transformation is complete.
One of the side effects of taking high dose corticosteroids, like prednisolone, for more than a few weeks, is the appearance of ‘moon face’. It’s kind of hard to describe and all you’re going to see of mine is that shadowy image above, but I’ll try to describe it (I know it doesnt look ‘too’ bad in that picture, but that’s why I choose it – don’t want to scare the readers!). Before I start, I should point out the not everyone gets this side effect, there are some lucky b^%&&rds who get away with it.
Your face becomes quite taut. Im not sure if it’s caused by oedema or fat redistribution, but it also feels lumpy in certain areas too, but the lumps come and go, very odd.
I do look a bit like the moonpig.com logo – my cheeks certainly resemble that adorable piggie wig, except I don’t look adorable, I just look weird.
I look (not very often these days) at myself in the mirror and it really doesn’t look like me. Well it sort of does, but sort of doesn’t. A kind of shadow of who I was.
I’m certainly not brave enough to bear all, as a full frontal in this blog post, as Suz did with her ‘Bald as an Ostrich‘ outing of her chemo induced bald head. Anyway, Suz actually looks lovely and people can honestly say to her she looks cool and beautiful. Whereas with the ol’ moon face, really, honestly you can’t, it’s certainly not cool and really NOT attractive.
It can be funny though, I am able to take the mickey out of myself and make people laugh about it. And my friends and family are very kind. They keep saying it looks like it’s going down – it isn’t, but it’s really kind of them to say so.
My niece, a medical student, who has promised to find a cure for dermatomyositis, suggested I take photo of my piggy face every day, to the point where it has eventually gone back to normal (i.e. as my dose of prednisolone tapers, the magic number being under 20mg a day, apparently) . Then make a flick book out of the photos so I can see the transformation. A great idea, but I don’t think I will do it, as once this is over, I really just want to forget it.
On the positive side and you do have to find a positive in things like this, otherwise you’d end up very down indeed. My nose looks much smaller (compared to the expanse of my cheeks) and my skin is very clear and probably the best it’s ever been. Also because of the tautness of the skin, I have no wrinkles whatsoever, wooo hoooo!
Oh and a final idea, how about Moon Facebook. It would allow me to have a current photo up without embarrassment, as it would only allow people with Moon Faces to become a member, we could then moan on about our fat cheeks without any feeling of guilt or shame: Damn, we could even have a competition on who’s cheeks are the biggest.