This is a Journal entry by Cheerful Dragon

When the side effects are worse than the condition the drugs are meant to treat.

Post 1

Cheerful Dragon

I have MS - relapsing-remitting MS to be exact. This means the symptoms go away, during which time I'm fine, then come back, during which time I'm not. How 'not fine' I am varies from attack to attack. It can be as minor as sense of touch slightly affected. The duration of each attack varies, too. Right now I'm into the 6th week of a pretty bad attack - unsteady, lacking coordination, speech affected, 'disconnected' spells where my brain knows what it wants my body to do but the signals don't get through.

Thing is, I went to see a specialist a few weeks ago. He was concerned that the attack had been going on for so long and recommended a short course of steroids to 'kick-start' a recovery. This turned out to be a cocktail of drugs - the steroid, a slow-release potassium supplement and a diuretic. Having been on the tablets for nearly a week (the delay was 'cos my GP had to do the prescription and he needed a urine test), I can honestly say the side effects of the drugs are worse than the MS attack. I've had bad heart-burn 'cos the GP and pharmacist didn't tell me the steroids have to be taken with food - I had to get that info from a friend who's had them and from the internet! Heartburn is easily treatable, but it's annoying 'cos it was avoidable if only they'd given me the information! I've had a pounding pulse, muscular weakness, but the worst of all is the disrupted sleep. Since I started the tablets I've had an average of 3-4 hours sleep per night, sometimes supplemented by a couple of hours snatched during the day. This leaves me lethargic and apathetic during the day. My speech is no longer as badly affected but the 'disconnected' spells continue, albeit not as badly.

In an ideal world we'd produce drugs that would do the job they're meant to do without side effects. Unfortunately this would be expensive and it would take for ever to get medicines to market. I will say this, though. If (or when) I have a similar attack, if the specialist recommends steroids again I'll say "Thanks, but no thanks!" The attacks I can cope with. They're a fact of life now. The side effects? Not nice, especially as the attack would (probably) have cleared up eventually anyway.


When the side effects are worse than the condition the drugs are meant to treat.

Post 2

Teuchter

Sorry to hear you're having a rough time CD smiley - hug

I've been on short courses of steroids over the years and found the worst side effect was the one affecting my emotional well-being - it was like bad PMT x 10.

I hope this current attack settles soon - and that you get a decent sleep.

On a totally unrelated matter, knowing your liking for jigsaws, I was thinking of you when I found a site where you can do puzzles on the computer - www.jigzone.com

Are jigsaws and computer mouses a bit of a no-go area just now?


When the side effects are worse than the condition the drugs are meant to treat.

Post 3

Gnomon - time to move on

Sorry to hear about your problems, Cheerful! Here's a picture to cheer you up:

http://www.davefry.net/pictures/animals/dragon.html

smiley - hug G


When the side effects are worse than the condition the drugs are meant to treat.

Post 4

Gnomon - time to move on

(although that is more of a sea serpent than a dragon)


When the side effects are worse than the condition the drugs are meant to treat.

Post 5

Cheerful Dragon

It's good enough, Gnomon. It made me smile, which is what I need right now.

And thanks for the link to the jigsaw site, Teuchtersmiley - cheers. I've bookmarked it. The idea of being able to turn some of my holiday snaps into jigsaws is a nice one. Jigsaws and mice are OK, BTW, it's things like typing or games that rely on speedy reactions that are out at the moment. Even typing in this posting is a bit problematic.


When the side effects are worse than the condition the drugs are meant to treat.

Post 6

abbi normal "Putting on the Ritz" with Dr Frankenstein

Hi Cheerfulsmiley - hug
I have just seen your posts and replied at the Nation.
Sorry to hear this round has kicked your butt.
Hopefully you will have some more improvement next week.


When the side effects are worse than the condition the drugs are meant to treat.

Post 7

Gnomon - time to move on

I only discovered the other day that Cat Stevens' song "I'm being followed by a moonshadow" is about MS.


When the side effects are worse than the condition the drugs are meant to treat.

Post 8

abbi normal "Putting on the Ritz" with Dr Frankenstein

I did not realise that.
I love Tea for the Tillerman wore out the album ,have the cdsmiley - biggrin


When the side effects are worse than the condition the drugs are meant to treat.

Post 9

saintfrancesca

I know what you mean. I was diagnosed (finally) a couple of years ago with a type of Addison's Disease. It manifests itself in bouts of extreme tiredness, heart symptoms and an inability to tolerate heat, so if I actually do anything on a hot day I can end up in hospital on a drip. The "normal" treatment is steroids. So I looked up steroids. The list of side effects is infinitely worse than the condition I have. Worst case end point: major organ failure, death or transplants. Nasty. Apart from that, they'd have little impact on my life as they can't treat the whole spectrum of symptoms.

I think when we have these pain in the bum conditions, we have two alternatives: either go the 'drug' path and suffer the consequenses, or use natural therapies. I manage quite well, using herbs and homoeopathy. The herbs help to replace what my body doesn't make, but it doesn't remove all the symptoms such as heat intolerance. However, it's better than being on dialysis waiting for a new kidney.

Good luck. MS is a toghie, but you can live quite well with it. A friend of my mother's has MS, and apart from being a remarkable woman, she manages her condition well with a minimum of medical intervention.


When the side effects are worse than the condition the drugs are meant to treat.

Post 10

Cheerful Dragon

I envy your mum's friend. Unfortunately, not everybody can manage without medication. My last attack went on for 9 months. I've been on Disease Modifying Drugs (interferon beta) since December 2004 and haven't had an attack. Before I started DMD, my attacks were getting more frequent and more severe. I'm lucky that I don't need steroids - other sufferers I know of have ended up in hospital on intravenous steroids.

Regarding the heartburn from the steroids, a couple of months ago my mum was diagnosed with polymyalgia. They put her on steroids to bring the symptoms under control, but they also gave her a capsule to protect the stomach lining so that she didn't get heartburn. I wish my doctor had done that!


When the side effects are worse than the condition the drugs are meant to treat.

Post 11

saintfrancesca

Yes, everything has its place. It seems you need to find a balance between drug therapy and managing on the bare minimum. I'm glad your attacks have evened out, it must be very debilitating when they are acting up. I found an excellent immunologist who is very supportive of what I am doing, but keeps an eye on things just in case. Good medicos. are essential, I feel. It's just finding them that's the hard part.

Do you work?? Just being personal, as I have had to stop working to a large extent, due to the fact that I don't function in summer. I would love some tips, that is if you don't mind me asking. It's something that bothers me somewhat as I like to get out there and do, but the last time I tried something "normal" I lasted 2 weeks!!

Anyway, smiley - hug


When the side effects are worse than the condition the drugs are meant to treat.

Post 12

Cheerful Dragon

I'm not working at the moment. In fact, with my GP's encouragement, I'm applying for Incapacity Benefit and Disability Living Allowance. The main reason is that I can't find a job I'm qualified for (writing software) close to home - I can't cope with the long drive to Birmingham every day any more. Any job that involves standing (e.g. filling shelves in a supermarket or filing) is not really an option. Besides, from what I've heard, companies would rather take on somebody able-bodied, regardless what a disabled persons abilities are. Having said that, I recently saw a job advert for Lecturer in IT. The job isn't that far away and the company advertising (a local college) uses the 'Positive about Disabled People' logo. I'm going to apply for it and I'll let you know how I get on.


When the side effects are worse than the condition the drugs are meant to treat.

Post 13

saintfrancesca

That lecturing sounds good. That's what I do, you go in and do a lecture, which takes about half the day up, get a good hourly rate and it really helps. The preparation is easy - just do it at home and then you always have it.

That's what I was doing before I had to move states to care for my sick and aging mother (the blind leading the blind sometimes). I was teaching casually at 2 colleges, one an Aboriginal college (bush food and medicines) and doing some teaching at a naturopathic college (manufacturing, Australian plants etc.) However, here I don't know anyone, and these sort of jobs depend on who you know, as they never get advertised. I've applied to the local TAFE that does diplomas in natural therapies, but no replies. The private colleges here don't teach what I am experienced in, so no go Joe (yet). I'm - very slowly - putting together some community education courses. Setting up the venues, getting the students etc. is energy and time consuming, so it's a softly softly business, but hopefully will be going eventually. I also had a small amount of patients, but again it's slow to start again. I have a few patients here, but you really need at least 1 per day to make any difference ... then there's the venue issue again ...

I think when you are expert in something, like writing programmes etc. it doesn't matter how "disabled" you are, it's what is in your head that counts, and your ability to communicate. Actually having lecturers like us is good 'role modelling' for others in similar circumstances.

Lots of luck. It's definitely worth a go at that college.

smiley - angel


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