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 12, 2012 § 4 Comments
I went to see a pulmonary specialist the other day to try and get to the bottom of my chest problems. I came away from that appointment, angry and insulted and let down.
I’ve have had a cough and chest problem since April, which if you’ve been reading my progress you’ll know coincided with all of the muscle involvement. Dermatomyositis can have lung involvement and can cause interstitial lung disease (ILD) which is a very nasty condition and basically, you do not want to get that.
In the early stages of my diagnosis (early June this year) I had a full body CT scan and chest x-ray and various pulmonary function tests and the conclusion after looking at the results of all these tests, was that I must have asthma and I may well have had all my life, but had never been diagnosed (just as an aside, Ive never had any inkling that I had any asthma like symptoms prior to getting this disease).
When I was told this, it was about a month after starting treatment for Dermatomyositis, which includes taking high dose corticosteroids, namely prednisolone. So the doctor said, let’s leave it a few months, as this is the treatment we would give you for asthma anyway, so it should clear it up. Great I thought, kill two birds with one stone and brilliant it’s asthma rather than ILD.
So here we are 4 months later and a hell of a lot of corticosteroids ingested. My chest problems remain. I have good and bad days. My worst days cause me pain on breathing and very shallow, tight breaths and a constant dry cough: It’s just as bad sitting as when I’m moving about. Good days, I have a bit of a cough still and a slight tight chest.
I presented the above to the consultant: A different one to the one I saw initially. He was very young, should that make a difference, maybe? I asked him why, after being on high dose steroids since June, did I still have asthma symptoms? He couldn’t answer that. I asked, could it be muscle involvement, after all, I have a disease that wastes muscle tissue? He said he didn’t see any reason to believe that, as the pulmonary function tests didn’t show muscle involvement.
He then said he needed to consult another doctor and would I mind waiting. He went off and was away a little while. When he came back he said that the only explanation for the continued asthma symptoms was that I was too overweight and I need to cut down on food as I must be overeating.
Ok…well I have put on weight since being on steroids, but seriously I am not that overweight, I am a UK size 14 now, that’s a US size 10. I absolutely do not overeat, my calorie intake is less than 2000 calories a day, I am gluten free, I eat fairly low carbohydrate and I make sure my protein intake is through fish and eggs. I also eat only high cocoa solid chocolate (70%+) as a treat, rarely, I will eat some ice-cream, but in very small amounts, in other words I am very diet aware.
I made sure the doctor knew this, as he did not once ask me about my diet, also he did not once make any comment on my disease and the fact you need to have a good diet. He insisted that because I was on steroids they would effectively force me to eat more (I know some people have food cravings when they take steroids, that has not been the case for me, I eat less now than I did before I was ill).
I explained to him I had a disease that affected my muscles and exercise was difficult, so I ate fewer calories to compensate, but i didn’t want to eat even less as it may affect my nutrient and protein intake. Not once did he offer dietary advise, all he said was that basically it was my fault and I wouldn’t get better unless I accepted that.
I was so angry!
Then to make matters worse, he said I need to take a steroid inhaler and that..wait for this one, this is the most amazing statement…it was a ‘test’ and he didn’t expect it to work, but just in case.
So, now Im expected to take even more steroids into my body, even though it has been shown they are having little, if no affect, on my chest problem.
I don’t expect doctors to be miracle workers, especially when it comes to a rare disease that has had little research, but taking the time to empathise with a patient and ask questions and listen, rather than make assumptions, might actually open up some area that hasn’t been explored and by doing so, we may find out a cause that wasn’t expected. Good science and in turn good medicine, come from an open mind and a willingness to explore.
Intersting, most recently, there’s been some research in the UK that states that, “working out a patient’s preferences is as important as an accurate medical diagnosis”. Hmmmm food for thought (pun intended).
I’ve decided I won’t be using the steroid inhaler and I’ll be seeking the opinion of my local GP instead. In the meantime, i’ll put up with the chest problems and hope they improve as the dermatomyositis improves.
I’m still well annoyed though. ROAAARRRRRRRRR!!!!!!!
And he has spoiled my dinner.
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 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.
October 15, 2012 § 2 Comments
Over the last week I have been feeling pretty ordinary. I feel like I have reached saturation point with the chemo and drugs – and just feel sick most of the time. I feel sick in my stomach and in my head – this funny sicky headache thing.
When I started down this track they warned me that the last three chemo doses are likely to be more difficult than the first few. And they are right. I take the anti-nausea tablets and I guess they work for a while but I wake up each day with the same awful sick feeling. There isn’t much I feel like eating – so that’s a struggle. The metallic taste has come back with vengeance. I thought that by drinking heaps and heaps of fluid that I might avoid it, but alas not. I just end up nauseous, feel like I’m eating metal and get up all night to go to the toilet.
After dose four I am also finding that my bones are aching. I was warned this might also happen but until the last dose of chemo I have, thankfully, managed to avoid it.
I’m also having lots of weird dreams – they seem very vivid at the time but I never seem to remember the details when I get up.
So I guess this is how things are meant to be – no point complaining. Just get on with it !!!!
September 18, 2012 § 7 Comments
I’m off to hospital tomorrow to see my dermatologist and neurologist (two for the price of one with dermatomyositis). During the discussions about where I’m at, I need to talk about using IVIG (intravenous immunoglobulin) as an alternative to methotrexate. This was brought up with me last week during my stay in hospital as I’m having quite a few side effects from the steroids and methotrexate and I suppose, they are hoping that IVIG will be a quicker and more effective control for the disease.
But…I just feel a but ‘funny’ about the whole thing. I think it might be a combination of factors, one of which being, that each bottle of immunoglobulin is made from the antibodies of 20,000 people. Now…I don’t know about you, but that sort of freaks me out. The thought of 20,000 other persons, ‘little bits’, floating about inside me feels just weird. Rationally, I know I’m being silly. Im a trained scientist for gods’* sake! But it feels weird, I’m telling you: A little bit yeurgh.
Then there’s that damned cannula. Please no more needles and cannulas!
Last week when they took that awful thing out, I bleed for ages, all over the place. My trousers were covered in blood.
Oh, but funny story. I had put those bloody trousers in my suitcase to come home and when I got back and opened the suitcase, the dog immediately jumped in and went into a state of crazed madness dragging the blood stained trousers out of the bag, shaking them and trying to lick the blood off: You’ve got to love dogs for their carefree attitude towards personal cleanliness.
Since taking my weekly Methotrexate on Sunday evening, I have been quite poorly. Nauseated, diarrhoea, weakness and extreme tiredness, headaches and any pain seems to be amplified. IVIG doesn’t come without side effects and they seem to be similar to those caused by methotrexate. I suppose the difference is that the treatment with IVIG is over a shorter period. If I stick with methotrexate we are talking at least another 2 years of taking the drug.
So, I am left with the question, IVIG or not IVIG?
I’ll let you know after tomorrows meeting…
* I purposely have used a small g and the apostrophe in this place, so as not to offend christians and to take into account the fact that some religions have multiple gods.