I am newly diagnosed. Have been taking pred 20mg for 6 weeks. Pain wise I am very lucky and have been completely pain free since 8 hours after the first dose.
Although 63 I was still working full time, and as I am self employed have been fortunate enough to be able to reduce my working hours.
Knowing from reading all these forum posts avidly ( and Kate Gilbert's book) how important it is to pace yourself and not get too tired, I have been trying to assess things.
What I have had since the beginning is maybe one day a week when I feel completely exhausted. What I have now feels like fatigue nearly all the time. But if I can isolate one thing it is more that my eyes feel weird...tired...heavy...slightly blurry, as though I am very tired and have not had nearly enough sleep.
Any ideas? Is this pred? I have no headache, jaw ache or anything else sinister.
Mary
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Mary63
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Could well be the Pred, both that and PMR can make you feel fatigued. It could also be affecting your eyes, trouble is it has many side effects, so sometimes it's difficult to attribute what is Pred related and what PMR related.
I would suggest, to put your mind at ease, that you make an optician's appointment just to check that nothing else is going on. They are very good at picking up things that your doctor cannot. Good luck.
Mary, as DL has said in her reply, both Pred and the inflammation of PMR can lead to fatigue. Add to this the fact that you are still working, albeit having reduced your hours, you have a triple whammy of causes. I take my hat off to all those of you who have to work, especially in the early days of managing this condition. I remember well the early days on steroids for PMR/GCA, when the overwhelming fatigue would hit so suddenly that I would have no choice but to sleep there and then, on one occasion after dinner at the home of friends. It will improve as you get lower on the steroids but meanwhile it isn't something you can fight or work through - you simply have to give in to it, in other words go with the flow.
As far as the blurry vision is concerned, in the absence of other symptoms, that is most likely to be a side effect of the steroids. When all my GCA symptoms were under control, I mentioned to my rheumatologist that I still had blurred vision, and found focusing on items on the supermarket shelf difficult. He immediately put my mind at rest, informing me that this was a side effect of the steroids.
And lucky you being pain-free - what a great response to the steroids. Long may that continue.
Have just read your reply Celtic to Mary, in the 6mths I have been on steroids, see the Rhuematologist every month and the nurse in between, I get asked all the questions every time, mention my blurry vision and can't focus properly, not once has he mentioned it could be the steroids causing the problem, thank you my mind has been put to rest over that issue.
Valrene, for double reassurance, whenever you feel concerned about your vision, always take yourself along to a good ophthalmologist, not just an ordinary optician who only dispenses glasses, but one who will examine the back of your eyes for any evolving problems.
This applies whether on steroids for PMR/GCA, or not. Whilst steroids cause sometimes cause cataracts which can themselves cause blurry vision, so can a lot of other potentially serious eye problems. I mention this following the experience of my son who at the age of 39 woke up with a problem with his vision, the cause of which turned out to be a stroke in his sleep; two members of my PMR/GCA support group rang me on separate occasions when experiencing problems with their vision, both with PMR and both worrying that they may have GCA. Naturally, I advised both of them to go to A&E immediately - one had had a TIA and the other a detached retina
So my advice to everyone is, it isn't just GCA that can cause a risk to vision - if in doubt, check it out!
Thank you Celtic have raised pressure in eyes so I do go to hospital now I'm on steroids every 3 months now to see opthalmologist so if anything wrong hope it will be checked up.
When I was on the higher doses of prednisone (I had to take 40 to get my symptoms under control), my eyes got very blurry & dry too. I was having trouble seeing when driving even though I had my glasses on, and I always felt kind of dizzy, off-kilter, and just plain weird. I was terrified I was getting GCA & got in immediately to my ophthamologist who saw nothing to indicate GCA. I even went back in 2 months & had him check my eyes again because it was so bad. As I tapered my pred, the severity of the symptoms, eased a little, but it wasn't until I got down below 10 mg, that all that stuff pretty much went away. Even now (I just tapered to 5mg), when I go out for a walk, I sometimes feel a little woozy & off-kilter. It really sucks that we need the prednisone to take away our pain, but it certainly can cause it's own nasty problems.
Thank you everyone for your input. I will follow advice you give. The timing of this has really sucked ( though is probably not at all coincidental) in that although I have managed to halve my working hours I have a book in final stages of editing, and it 'calls' me in every spare moment! Then I get too tired and collapse! Hey ho!
Hi Mary must admit since I have gone from 20mg to 10mg of steroids do not feel quite so tired all the time, it's so frustrating but have to put up with it I have decided or be in permanent pain, hope you feel better soon.
You may well find that resting BEFORE you get tired will allow a longer amount of productive time overall. Some people with autoimmune disorders plan a fixed rest time - worked out as being the optimum for them - and stick to it rigidly. You may not feel tired but the rest gives you a good boost to carry on into later in the day when otherwise you might be a gibbering heap.
I can relate to the "book" - my husband and I edit one every year and there is a loud cheer the day he sends it off for the next stage. Followed this year by frustrated boos having discovered that a month later it hasn't been touched any further...
There is a blog called Despite Lupus by Sara Gorman. Her advice about resting to achieve best value for money from the day is excellent. Autoimmune disease is AI disease - lots of commonalities.
Hello Mary63 it's nice to know you are pain free, it's also good to know that you recognise your Fatigue and rest when you know you should .With all my years with PMR (sorry to say nearly 13) that it is the Fatigue that I hate..trying to get through the Day when everyone else is Buzzing is very hard. When you say your eyes are hurting I wonder if you have a cold or virus as I have just had a dreadful cold and my eyes hurt all the way through and I had Blurred vision ,but now I am on the mend my eyes are much easier. I am so pleased you are pain free !! Since having Bowen Therapy my pain level is easier but I still get enough . I hope your Fatigue gets better quickly with lighter mornings now and Spring coming through hopefully it will give us All a lift with a bit more energy. Best wishes trish29
I would mention both symptoms to your doctor though, just to be on the safe side, but I am having similar problems with my eyes. The doctor has told me that it is a condition called dry eye, although my eyes are not actually dry. They seem moist enough but they go blurry and feel gritty with crystals of something forming in the inner corners from time to time. It seems to stop the tear ducts from draining properly. It can apparently be liked to taking prednisolone.
The exhaustion is all part and parcel, even if you pace yourself. All you can do is take frequent rests and not go mad on the days you feel better, because it will come back and hit you with a vengeance.
You can get drops or spray for your dry eyes, either from the pharmacist or doctor. Also try gently massaging your closed eyes with a little drop of baby shampoo on a soft cotton pad (not cotton wool), then rinse throughly with warm water, this releases the gunk we some get in our tears ducts. Also try cotton pad soaked in hot water on close eye, again gently massaging the inner corner, the heat again unblocks the tear duct.
Mine get worse in sunny or windy conditions, so a good pair of wrap around sun glasses is another good idea. Just watch out for the paparazzi!!
Hi I have suffered with dry eyes for quite a few years now Dr put me on Visco Tears which I find brilliant, but since having all this pain and being on steroids my eyes are a lot worse, dry, itchy gunk in corner of eyes, instead of using drops 3 times a day I use them 4 times a day, really helps as its like a gel.
Valrene, my husband was given Visco tears by our GP but they didn't do any good , in fact his vision was worse, then, when he saw the consultant, was told not to use those but to try Liquifilm Tears which are a lighter one, and we have both used them and find them invaluable. My eyes water a lot less now.
Thanks Jean were your eyes running, mine are very dry so do find the gel does grease them well, but could be why my vision is blurry at times, next time I see my GP will ask about yours. Val.
Hi Valrene. yes my eyes are very watery, and he reason my husband couldn't use the other eyedrops was because it made his eyes blurry despite the watering.
I have been on Pred for 6 weeks.I feel tired all the time! I work full time and some times do 44 hours a week, my job is stressful.My pmr pain went 2 days after I started on Pred.I have achey eyes,I feel like I have eye strain all the time and my head feels weird like its full of cotton wool.I'm not in pain though.Seeing optician on 12th March.
We're both newbies! Both working too hard probably! I think that we need to take the advice of all these old hands! Keep in touch with what happens about your eyes. Good luck!
Yes Mary we can learn a lot from this site.I've bought books and joined fb groups,I just want to come off Pred as soon as possible.Will let you know what the optician says. Sandra
Hi Mary 63. I see that you have lots of replies, but my eyes hurt too much to read them all. My eyes always hurt a bit as I have sjorgrens amongst other things. But, was put on 25mg of pred about 3 weeks ago and my eyes have become very painful. It must be something to do with the steroids, so am going to Dr on Thursday to discuss. I will let you know what he thinks. Lots of sleep...and eye drops in the meantime. Xx
One way that pred can affect your eyes is that, being a glucocorticosteroid, it raises the glucose level in your body fluid, and this includes the fluid in your cornea. So in order to get the sugar solution right, you get more fluid - this means that your cornea swells slightly, so that you are not seeing as well as you should be. You may find that as you decrease the dose this effect isn't so bad. It might also be an idea to cut down your sugar and starch intake as much as possible when this is happening.
Thanks Kate very much. I am actually intolerant of sugar so I hardly eeer have it, and in an effort to keep my weight down , have found low carb diet very good, so rarely eat bread biscuits etc. But thanks for the advice.
Hi Mary63,I said I would let you know what the optician said today.Well he said my eyes haven't changed at all since last year.I told him my concerns about steroids and my achey tired eyes,he said they sound dry although they don't actually feel dry to me.He said he very rarely comes across patients whose eyes have been damaged by steroids and not to worry.I said I want to come off them asap,he told me not to rush it as sometimes you can end up increasing again, and to remember years ago before Pred we would be in wheelchairs !!
Hi everyone. I have had pmr for nearly five years and have trouble with blurry eyes without head pain throughout the five years. Optician says my eyes are fine. I find that when I use computer or iPad its worse think it might be the bright light. Down to 2.5 preds at the moment and struggling in the morning, but I will hang in using paracetamol. Good luck everyone.
I have to go with Kate on this one. Like you I don't use sugar, and generally keep the carbs down, but after I take my dose of Pred my blood sugars go into orbit, and I am not normally a diabetic. My GP has had me monitoring mine randomly once a day for the last week and I have to continue for a further fourtnight - but a very clear picture is presenting itself to me when I look at the results I am getting. Before my dose and over night my sugars are normal, but within two hours of my dose of meds my sugars go as high as 13 or more. Over the course of the day they gradually go down until by late evening I am usually back into normal ranges.
When my sugars are high my eyes feel blurry, I feel unwell, tired, and shaky; all this goes pretty much away as they come down, although my eyes silll feel a bit weird dry and uncomfortable - I have been given some drops with no preservative in them as those with sting unbearbly when I use them. There is also a blepharitis foam which helps a bit, but my favourite discovery is SImple Eye roller which is mainly cucumber and you can use it round your eyes as often as you like, leaves them feeling lovely and cool for quite a while.
Opticians are your best friend ,they can see what the doctor sitting at a desk cannot .Better safe then sorry and it will put your mind at rest .I got a microwave warmable eye mask from mine for dry eyes and irritation .Its really good a bit expensive but must have been flush at the time .about £15 if I remember .It does give temporary relief.
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.about £15 if I remember .It does give temporary relief.
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