72 year old woman with Polymyalgia suffering bloodshot eyes. Is this a common occurance?

[gannie]

I was diagnosed with PMR at the beginning of August this year (2017) after weeks of being virtually disabled. I was prescribed prednisolone (20 mgs per day) and my immediate 'recovery' felt like a miracle of biblical proportions. I have reduced the steroids by 2.5 mgs every two weeks as instructed and am now down to 10 mgs which will be my maintenance dose. I have suffered a few side effects from the steroids, most of which are well documented but I keep getting small bleeds in my eyes which are not painful but miserable to look at. I would be interested to know if anyone else has had this problem. My blood pressure is within normal limits, incidentally.

[DorsetLady PMRGCAuk volunteer]

Hi gannie,

Welcome. Yes this is a common side effect of Pred. Nothing to worry about although a bit disconcerting at the time. It’s because the Pred effects the very small capillaries so not only do you get bloodshot eyes you’ll probably find you bruise a lot easier as well.

Not quite sure I understand your comment that 10mg will be your maintenance dose, the idea is to reduce to find the right dose for you, until the PMR goes into remission and you then don’t need it. I guess your doctor intends for you to stay on 10mg for a year, and then reduce you - some do! Perhaps you’d like to clarify.

[gannie in reply to DorsetLady]

When I saw the doctor, I had been taking 20 mgs Pred for 3 weeks so he asked that I reduce it straight away to 15 mgs for 2 weeks and then a reduction of 2.5 mgs every two weeks until I reached 10 mgs which, he said, would be my maintenance dose. I have now reached that point, DorsetLady, and I see the doctor again a week today (16th October). He's been on holiday but I was keen to stay with him so that I get some continuity of care. It means that there has been a long gap in between and I won't know what comes next until I see him

[DorsetLady PMRGCAuk volunteer in reply to gannie]

Okay. That’s not the normal route most seem to take, but perhaps it’s a new thought, or perhaps your circumstances are different.

Be interest to see what he says at next appointment. Please let us know.

[PMRpro Ambassador in reply to gannie]

Never come across that approach before. As long as it works all well and good.

[gannie in reply to PMRpro]

Well, as I have nothing to compare my situation with, what would you consider to be the 'normal' approach, PMRpro?

[PMRpro Ambassador in reply to gannie]

You don't fix a "maintenance dose" in advance - you reduce slowly until you find the lowest dose that manages the symptoms as well as the starting dose did. It might be 10mg - but it could equally well well be higher or lower. Everyone is different and a reduction scheme must be adjusted for the individual. It depends on how much of the pred you absorb, it varies, and the activity of the underlying autoimmune disease, the more active it is the more pred you need.

One group suggests a reduction scheme where they use 15mg for 6 weeks, 12.5mg for 6 weeks and then 10mg for a year before then continuing to reduce 1mg at a time from there if it works. But the 10mg isn't a maintenance dose - and not everyone can get to 10mg easily. Anyway the reduction is MUCH slower than your doctor is suggesting.

[gannie in reply to PMRpro]

Whilst I appreciate what you are saying, PMRpro, I can hardly go to my doctor to tell him that a woman on the internet says he's doing it all wrong! You may be of the opinion that the reduction should be much slower but I appear to have managed to reach the 10 mgs with no return of any symptoms and, unless there is a return of symptoms, I shall continue to take my doctor's advice. Obviously, I will discuss all aspects of my condition when I next see him.

[PMRpro Ambassador in reply to gannie]

Ah well - there's many a slip they say.

But this "woman on the internet" is only relaying what top experts say too.

[gannie in reply to PMRpro]

Apologies if I appear prickly, PMRpro, but I am getting worried and upset now wondering who on earth is right and who is wrong about the meds dose and it's reduction etc. The doctor did write down 'the plan' for me and he actually got the information from his computer but I don't know whether it was internet based or something on his own files. I can see that I will have to have some kind of tactful but delving conversation with him even though I feel very well at the moment and so far have had no return of symptoms.

[PMRpro Ambassador in reply to gannie]

There probably is no right or wrong - but what we know from experience on the forums is that slow reduction can proceed steadily down to a certain point. Then the symptoms return - so you go back up a step and wait a bit and then try a SMALL drop again.

That point can be anywhere - but since the desperate desire is to get us off pred, the compromise position is to reduce slowly and in small steps - you may get stuck above 10mg or you may get well below it. But that is the point you hang around at for a few months - so wherever it is, you can't predict what it will be is what I was saying. And if you are lucky it will be below 10mg.

I'd hope he may be referring to the protocol the Bristol group suggested which does reduce flares - but as I said, the 10mg isn't really a maintenance dose and there CAN be problems getting there. The Dead slow approach seems to avoid flares very very well - and is infinitely adjustable.

Don't worry - as long as your GP doesn't try to force reductions you will be fine.

[gannie in reply to PMRpro]

Aaah, yes, that makes a lot of sense now so thank you for that, PMRpro. To be honest, I had wondered if my symptoms might return at some point so I will not be surprised if they do.

I have an appointment with the doctor on Monday so I may be better informed after I've seen him Again, thanks for your explanation.

[SheffieldJane]

Hello Gannie and welcome, So glad that they finally diagnosed you and you got the Pred miracle! I see that DorsetLady has answered your eye question. I bet it passes to be replaced by something equally puzzling. I was wondering about " 10 mgs being your maintenance dose". I was diagnosed in March 2016 and am struggling to get from 7 mgs to 6 using a very gradual method. I think 10 would be lovely but I need to get off Pred. It's beginning to tell on me, or something I'm taking is. Tell us more.

[gannie in reply to SheffieldJane]

Hello, SheffieldJane, and thank you for your kind welcome. Your 6/7 mgs of Pred is interesting and I shall ask my GP if going lower than 10 mgs will be achievable for me because I've only actually seen the doc once since diagnosis and am not very knowledgeable about the condition. I am having side effects from the steroids though - I've always been around 8 stones but have gained half a stone and my face has become more round. My kind friends and family say it suits me! Ha! Perhaps the worse side effect is the heartburn I'm getting despite having tried Omeprazole and Ranitidine but I suppose it's a small price to pay for regained mobility.

My guess is that you may be able to relate to some of what I have said, SheffieldJane? It would be good to hear your 'story' because this is the first time I've spoken to anyone with PMR.

I see my doctor again on 16th October.

[DorsetLady PMRGCAuk volunteer]

Hi again gannie,

You might like to read through this

healthunlocked.com/pmrgcauk...

(GCA 2010-2016 - in remission)

[gannie in reply to DorsetLady]

Oh, thank you, DorsetLady. That is very kind of you and I will certainly take a look at that

[gannie in reply to gannie]

That's a very interesting article, DorsetLady, and I've posted it on my Facebook page to help others if they have the same condition

[SheffieldJane]

I always take my Pred with Greek yoghurt and honey and if I go through a phase of heartburn type symptoms I go back on Omeprazole ( I am wary of it just reading the side effects). I did have a frightening Oesophageal Spasm once that I put down to Pred sensitising all the soft membrane.

If you are free from the pain and stiffness of PMR I would try a dead slow nearly stop reduction of never more than 10% of your dose and really listen to your body to ensure that the old symptoms are not building again - stop reducing if they are. The aim is to get to the lowest possible dose to manage your PMR symptoms. Information is on this site if you type in Dead Slow Nearly Stop in the search box.

Have you been prescribed Vit D and Calcium ( a must)?

Have you had a recent DEXA Scan to measure your bone density? Really push for one if not and only take Biophosphates if you really have to ( bone protecting drugs but with potentially serious side effects).

It's the irresistible hunger that puts the weight on is exacerbated by carbohydrates and sugar that is dealt with differently when you are on steroids. So cut these out or down ( I should practise what I preach, I am a slave to ice cream).

Good luck - you seem to be doing well. Let us know how you get on!

[gannie in reply to SheffieldJane]

Hello again SheffieldJane and thank you for your advice

I haven't been prescribed Vitamin D and calcium because the GP said I didn't need it as I drink about 12 pints of milk a week in one form or another. However, he has prescribed Alendronic Acid which I was reluctant to take when I read the instructions but I seem to be OK with it so will carry on unless I encounter a problem.

Regarding weight, I'm not eating any more than usual and I don't have a sweet tooth BUT until just before the PMR got me in its grip, I was the owner of a rescue retired greyhound which I walked three times a day (I've had 4 greys since 2002). I really must get back into the habit of doing the walks but without a dog! All that said, I do realise that steroids affect one's metabolism.

[SheffieldJane in reply to gannie]

I looked after an anxious rescue greyhound, outside a bucher's shop for a man yesterday, called Otis. What a darling he was. Sorely tempted.

My step counter ( fit bit) does motivate me to walk more, my goal is 7,600 steps and I usually get there and even beat it.

Please watch the AA there have been recent studies casting doubt on its efficacy. It scares me.

[gannie in reply to SheffieldJane]

I will do a bit of research re AA then, Jane. I don't like taking it, to be honest. Something that has to be taken and then to remain upright worries me because it suggests the effects could be quite harmful if the pill came back up the gullet.

Since you mentioned the dog, I am involved in greyhound welfare and have known for many years what a disgusting industry it is. There are over 10,000 dogs destroyed every year at 3 to 4 years of age when they have outlived their 'usefulness' on the track plus likely just as many again that don't make the grade. The 'lucky' ones get places in rescue kennels.... I won't bang on about it any more though

[SheffieldJane in reply to gannie]

It's just plain wrong.

[Rugger in reply to gannie]

Alendonic Acid is a drug used to treat osteoporosis, so PLEASE ask for a DEXA bone density scan asap to prove whether you really need to take it. As Jane says, it's not a drug to take if you don't need it! Also, AA is not effective if you have low vitamin D in your blood, so your GP should have checked that before starting you on it and corrected it with a high dose vitamin D preparation if required. We should all be prescribed calcium and vitamin D even if we are drinking milk. (I can get through 10 pints a week!)

In the UK Prednisolone comes in plain white tablets or 'gastro-coated'. I take the gastro-coated which take longer to work, as the pred is not released from them until they've left your stomach. The good thing is, they might help the heartburn without the need for the other drugs that you've not found too useful. They come in 5mg, 2.5mg and 1mg. They're not expensive - pred costs only pennies per tablet - and you'll save the NHS the cost of the other drugs.

(Apologies if you're not in the UK - if I leave this page to check, I'll lose what I've written. Your lovely photo looks British to me!)

I take my coated pred at bedtime, with some yoghurt, so that the pred will be effective in the early hours when the inflammatory material is at its peak.

I think some doctors (?Bristol) do keep people on 10mg for a year before they start the tapering, but it's not in the British Society for Rheumatology guidelines. From what we read here, there are all kinds of protocols in place!

Have a look at the pinned post on the right 'Steroid Taper Web Application' to see just how many there are!

(PMR 17 months on 8mg pred)

[gannie in reply to Rugger]

Many thanks for that, Rugger. Yes, I am British and live in the Midlands

[SnazzyD]

Hello, I find quite rapid weight gain from fluid retention if I have salt, even just incidental salt in foods. Makes for a boring diet as so much contains the stuff. However, if I do succumb to some delicacy, in a couple of days it is gone again.

[gannie in reply to SnazzyD]

Oh dear! I don't think I could do without salt, SnazzyD Interesting though because I hadn't attributed my weight gain to fluid retention.

[PMRpro Ambassador]

Pred makes blood vessels fragile - including in the eyes. Some people get bloodshot eyes, some get bruises all over the place and a few lucky people don't! But they are the minority!

I would not take the AA until your GP has sent you for a dexascan and checked both vit D and calcium levels - and I would also insist on calcium and vit D supplements since the milk won't do a lot for the vit D and that is just as important as the calcium. AA won't work unless the calcium and vit D levels are correct so that is an important point. Cows milk is also not as good a source of calcium for humans as you might think - and certainly not if it is skimmed - you need the fat to transport it into the blood.

You don't say on your profile where you are from - but that picture looks very UK-ish. There are real live support groups in many areas - maybe one is close to you. This is the link I have on-tap:

pmr-gca-northeast.org.uk/

and there is a map to click on to find where groups are.

I too am a bit confused by "10mg being your paintenance dose" - I can only assume your PP has misunderstood the Bristol paper

rcpe.ac.uk/sites/default/fi...

where they keep you at 10mg for a year before reducing further. It is very good, better than most doctor-led reductions to be found, but it still falls into the trap of assuming all patients are the same. And we aren't! Some will struggle to get down to 10mg in the first place, others would be able to reduce to a lower dose before sticking and others may not be able to get far below 10mg even after a year and may take years not months to get from 10mg to zero.

[gannie in reply to PMRpro]

Thanks for your input, PMRpro. I can see that I have a lot to discuss with my GP when I see him. Yes, I am British and live in the Midlands....