Well it seems that prednisolone has taken its toll after all. I thought I had got away scot free but it wasn't to be. I went to the opticians for my sight test and was reliably informed that I have the starts of cataracts in both eyes, a side effect of steroid treatment I was told.
On top of that I have been having issues with my hands; a lack of sensation and lack of ability to grip were the main issues and also waking up in the middle of the night feeling as though my hand is resting in a naked flame with no way to remove it. Things came to a head when I got a deep tissue burn on my wrist from coming into contact with a hot pan and didn't even realise I had done it until I moved my arm and found it was stuck to the pan. It turns out I have carpal tunnel syndrome in both arms, the left being severe and the right is moderate, although why the left is worse than the right is anyone's guess when you consider I'm right handed. "It is because of the long term steroid treatment you had to undergo for your PMR" is the reason I was given.
I also started having issues with a sore developing on my right shin. It looked like the starts of an ulcer and I was told that too was a result of taking steroids. Luckily it hasn't developed any further and has gradually healed on its own again since I started using one of those revitive electronic pulsing machines that stimulates the muscles to improve blood flow.
I'm at the point now of wondering if the cyst I have developed in my lumbar spine, which is preventing me from walking more than a few paces, is also down to taking the steroids. And just to add insult to injury I fell out of my wheelchair onto my elbow and cause damage to my left shoulder, which prevents me from raising my arm high enough to put my hair up in a ponytail out of the way in this heat. All this on top of the PMR and fibromyalgia to boot. Please sir can we stop now, at least for a while? I think I've had enough.
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Chihuahua1
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Oh Chihuahua1, My heart goes out to you ! What a miserable catalogue of suffering.
I would almost welcome the cataract operation, I have heard wonderful things about how well you see afterwards, ditching glasses etc.
The lack of sensation you experience, illustrated by your poor arm being stuck to the pan, worries me more. What can be done medically to help this? Never allow the medical establishment to dismiss you and indirectly place blame at your door. As we get older we develop a range of disorders, who knows which ones can be laid at Prednisalone’s door? Had we not taken it, we could be looking at a whole other array of life limiting conditions like GCA and Aortic Vasculitis for instance.
Well done for addressing your circulatory problems with the electronic pulsing machine. I think this is how we go forward, addressing each thing as it pops up. It is what it is, as the young are fond of saying.
I am sorry for your suffering and I admire your pluck. Sending a hug from Yorkshire!
The trip on the Good Ship PMR is certainly no cruise. I've tried to find the captain so we can get off or sack him/her for rubbish steering but got too knackered. I think I'll hide in the lifeboat just in case we see The Shore of Good Health XXX take care and Kia Kaha (be strong)
You wrote "I went to the opticians for my sight test and was reliably informed that I have the start of cataracts in both eyes, "
I am assuming you wear glasses and if it is just the beginning of cataracts, the optician should have told you to switch to 'Reactolite Rapide' lense.
Sunlight and Pred do not go well together and can encourage cataracts to grow.
I had my lens changed immediately by the opthamologist when first diagnosed with GCA and I already had the start of cataracts. I was 69. 11 years down the line, they have only slightly increased in size. I took pred for 5 years then remission. My night vision driving glasses where also changed to counteract the extremely bright headlights of oncoming cars. I no longer drive. I still wear re-actolite rapide lense.
The above was verified much later by an optician who asked to speak at a meeting of PMR and GCA patients. His Mother had PMR and he wanted us to be aware of Pred, Sunlight and Cataracts.
Thanks for your concern. However I have been using reactions lenses for the best part of 40 years. I also have sunglasses for in the car because reactions do not work indoors. I have since been told that there is a possibility that because I no longer take steroids the cataracts might possibly self correct
I wish I could make it stop for you! My only input is about cataracts. I had my eyes tested a year ago no mention of them. My eye sight quickly worsened. I now have a new lens in one eye and have just received appointment for the second. Development was rapid, surgeon said not unusual on long term pred.
GOOD NEWS.... the op is quick, painless and effective
HI. So sorry you are having these terrible side effects!! I think the cataract thing is very very common.. I have them starting..maybe going faster..but I had it before and in the end everyone I know is thrilled to have the cataract surgery eventually and throw away the glasses! I worry too about the sore having seen that photo someone posted of her leg!!! Keep watching that! revitive electronic machine?? what is it? Feel better I am so sorry you have had a day/weeek/month like this!!!
A revitive machine is an electronic machine . It looks a bit like a pair of scales that you place your feet on the platform whilst sitting down. You turn the power up a bit at a time and it stimulates the leg muscles to contract and relax in a pulsing wave. It helps with circulation, including helping to reduce the excess fluid in the lower limbs
"It is because of the long term steroid treatment you had to undergo for your PMR"
Really? Who told you that? Carpal tunnel syndrome can be part of PMR - and for most people the pred relieves the swelling. In fact - it is the first approach used by many doctors in carpal tunnel syndrome before progressing to surgery and injecting steroids is regarded as one of the most effective forms of management.
I think you have doctors around you who automatically blame everything on you being on steroids - which isn't always true but saves them taking reponsibility for management.
Like SJ I, too, would welcome cataracts - I could get rid of one pair of specs!! But even after 8 years of pred there was no sign of any forming! If they do form when we are on pred they tend to progress quickly - it is possible you would have developed cataracts anyway but there is an increased risk when on pred. But they are very easy to deal with.
It was the consultant in the rheumatology department who said about the carpal tunnel. I'm not worried by any of it, just irritated that everything seems to have piled in on me one thing after another. Couldn't it just give me a break and let me recover from one before presenting the next challenge? Just as well I don't give in easily. I will get there eventually. The first thing being fully addressed is on friday at the dental hospital, where they are going to be dealing with a massive mouth infection through all my teeth crumbling. I have 3 live abscesses that need dealing with for starters.
Thank you for the hugs and hugs in return are coming your way. The good news is that they have confirmed that they will operate on my spinal cyst under general anaesthetic at Addenbrookes and remove it rather than just drain it. AT least if they remove it then it can't refill, although there is a slight chance it can regrow. I'm not as badly off as some and some of my issues can be repaired or otherwise dealt with. I can't cope with housework at the moment it's true, but that is more to do with extreme fatigue. 5 minutes work and 5 hours rest seems to be the order of the day at the mo, which appears to stem from the fibro rather than the PMR. I will get there eventually. It just seems as though everything is very long-winded to say the least. Unfortunately we can't wave a magic wand to make it all go away, so we just have to go with the flow and keep plodding along. Just as well I'm lucky enough not to suffer with depression. Like most people in the world I do have the odd down day, but that is usually more down to frustration at not being able to do the things I'd like to and the irritation never lasts. It has always subsided by the following day.
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