Prednisolone and eye pressure

Can anyone point me in the right direction for information on what doses of Pred might increase eye pressures? I'm having a pretty bad time at the moment and feel very unsupported. 2 years 3 months in - GP doesn't seem to believe in PMR and knows very little, Rheumy less than helpful saying "presumed PMR" and discharged me. I got down to 4.5mg, had to increase to 7, now I'm trying out taking it at night as mornings were bad, but late evenings are getting painful, and turning over in bed and the usual early hours bathroom visit are proving very difficult (though by getting up time I'm much better). I'm considering increasing my dose, but I'm in the throes of treatment for my serious Glaucoma. I've just ordered a second set of new specs, as every time the pressure in my bad eye changes the prescription changes, and I've already lost a lot of sight. I'm between the devil and the deep blue sea with this.

19 Replies

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  • Hi Roltuba,

    Sorry you're having problems. Why don't you try splitting your dose, that way you may get enough relief both morning's and evenings as it sounds as if your one dose doesn't last 24hrs. Most people say 2/3rds am, 1/3rd pm, so you could try 4.5 & 2.5 or 4 & 3. Sometimes it's a matter of trying and see!

    Would have thought that if your eyes pressures and Glaucoma were Pred induced, then by 4.5 or even 7mg both should be improving (mine got bettter around 9mg), but maybe you had Glaucoma prior to PMR.

    Know what you mean about specs- been there, and they're not cheap!

    Sorry can't be more helpful!

  • Roltuba, I think it will be nigh on impossible for anyone to answer your question as to what dose of Pred might increase eye pressures. The reason being that we are all different and therefore can be a little different in the way we present with various symptoms and in the way we respond to treatment.

    It sounds as though you need expert advice on both your problems: firstly, with a different rheumatologist who is prepared to investigate and come up with a more definitive diagnosis and, more importantly, rule out any sign of GCA; and, secondly, with a good ophthalmologist.

    I had rising eye pressures for some years before the onset of PMR and GCA. Whether the years on Prednisolone starting at high doses (40mg) had any worsening effect is difficult to tell as the pressures were being treated with eye drops.

    I have to admit to having been somewhat panicky on the eye pressure front when diagnosed with GCA, knowing that Pred can increase those pressures. I decided to consult a highly recommended ophthalmologist privately and I have continued to see him 6-monthly even though I am now in remission from PMR/GCA. I have pressures which are quite resistant to the eye drops and can rise above normal from time to time, but the ophthalmologist always checks the optic nerve for any sign of imminent damage and also for any hint of GCA. Up to now, thankfully, the optic nerve remains healthy.

    I do hope that you will be as lucky with a second- opinion rheumatologist as I was with mine (the first was useless). And if you haven't seen a good ophthalmologist, then my advice from my experience would be to try and find one. Good luck!

  • I would be interested in knowing who your ophthalmologist consultant is. I've been having problems for months with my eyes including high pressures (GCA from Feb 2015, currently on 18.5 mg pred) and I've never really known whether it's because of the GCA or pred, so I've been yo yoing my dose (even with normal blood markers), at the annoyance of my rhuemy consultant.

    I was due to have an iridotomy (Laser hole in the iris to relieve pressure) after my local hospital ophthalmologist told me I had acute angle closure and to prevent glaucoma. It seems it's a common procedure, but not without its risks.

    However, a second registrar wasn't sure whether I needed it just before it was due to happen! Confusion reigned, and the procedure was re scheduled!

    I have to say I was a bit spooked by all that, and as a result I've booked to see a consultant at Moorfields to get a second (third?) opinion. He's Mr Bhermi, a specialist in glaucoma and cataracts, so hopefully I'll get more answers and better guidance.

  • Ronnie, my ophthalmologist sees NHS patients at Ashford & St Peter's Hospitals in Surrey, West Middlesex University Hospital in Middlesex, and private patients at hospitals in Surrey, Middx and Berkshire, plus at his home in Sunbury. You haven't mentioned in what area you live but if you have been given an appointment with a specialist at Moorfields, I would have thought you would be in good hands there.

    I do understand how difficult it is knowing which symptom is due to which condition when GCA, Pred and high eye pressures are in the mix, and how worrying this can be especially where our eyesight is concerned. However, I'm not surprised your Rheumy is annoyed at the yo-yoing of steroid doses - that is never a good idea and can lead to difficulties in successfully reducing doses in the future. Apart from the high eye pressures, what are the other eye problems to which you refer? If, for instance, one of those problems is blurred vision, that can be a side effect of the high dose steroids, so a reason to reduce the doses if at all possible rather than yo-yo them.

  • Sorry if I gave you the impression that the decisions to change dose were flippant. In each case I sought advice, but the way rheumatology service works in my area means that the soonest I received a response to my request for advice in the face of worrying symptoms (blurring of vision, eyeache, headache, jaw pain) was 3 days. Another time it took 7 days. In one case I went to A &E, but the doctor who saw me simply put up my dose to 30 mg as a precaution.

    My consultant was annoyed because in each case my blood markers were normal and he will not accept that the GCA is active, despite the symptoms, and the fact that the higher dose seems to resolve the issues. Unfortunately he cannot provide an alternative explanation.

    Of course my greatest concern is optical nerve damage as a result of the GCA, and the advice on this forum is to act on the side of caution. There is nothing I'd like better than to reduce my pred dose, particularly as all my eye problems including high pressures and cataracts have occurred whilst on high doses.

    I am so frustrated by this that after pressing my GP, she is going to refer me to a neurologist, as she thinks the GCA is in remission.

  • Certainly no apologies necessary, Ronnie - I was just concerned because yo-yoing doses has been found to be so counter-productive for so many patients during the years I have been involved with PMR/GCA either as a patient or in my links with other patients via forums such as this and with the local support group, and I didn't want to think that this might be happening for you.

    It is true that many medical experts seem to believe that if our blood tests don't show raised inflammatory markers, we don't have active inflammation due to PMR/GCA. What we do find is that sometimes the blood test results can lag behind the symptoms.

    Did you have raised markers at the outset? I had very high markers at diagnosis, and was very lucky in that the blood tests always corresponded to my symptoms along the way. I was never completely pain-free down through the doses but would soon learn to spot a flare and subsequent blood tests would inevitably show increasing inflammation. I must admit this routine usually applied to my PMR symptoms rather than to those of GCA.

    As far as my GCA symptoms were concerned, the severe head pain and jaw pain never returned once on treatment but I did experience a lot of blurred vision, and if I was caught out in any winds, even breezes, or sat anywhere near an air-conditioning system, I would immediately experience pain shooting through my face, eyes and temple area, so the nerves in that area were definitely affected. I used to wear head covering at the slightest breeze - it's a wonder I didn't become known as the local hoodie!

    Certainly, as you mention experiencing returning head/eye/jaw pain, then that obviously needed prompt intervention, and, in those circumstances, I would have been on the phone to the rheumy helpline or hot-footed it to A&E. Perhaps I was lucky GCA-wise or temporal arteritis-wise but the pain in my body proved a harder nut to crack through some 5 1/2 years on steroids.

    Like you, I was worried about damage to my optic nerve due to GCA, my diagnosis of glaucoma and the effect of the steroids, and that is why I stick to my ophthalmologist like glue even now when in remission. He also keeps a check on my cataracts, and doesn't recommend any need for surgery at this stage.

    Certainly, it sounds as though you need some expert intervention and, hopefully, Moorfields and referral to a neurologist will provide some answers.

    I can recommend a wonderful rheumy if you feel that would help, and, of course, if it isn't too far for you to travel to Chertsey, Surrey.

  • Thanks so much for the comments and advice. It's so comforting to hear of how others are coping with the whole experience. I'll certainly consider your recommendations for consultants.

    I'm intrigued by your cataract comment - my vision now has a regular glare and reduced contrast which has only recently developed, which the ophthalmologist puts down to cataracts. He led me to understand that correction surgery would be down to me to initiate (subject to waiting list).

    I have to say that I'm surprised by the speed with which they seem to have developed, and I'm quite keen to get them sorted.

  • Yes "reduced contrast" sounds very akin to cataracts. The first problem I noticed that was probably related to the cataracts starting up was an aversion to the bright car headlights during night time travel. I definitely prefer not to drive after dark now. I found slightly tinted glasses for driving helped. Years ago they used to wait for cataracts to "ripen" before removing them, but now I think it is more up to when the individual feels the need.

  • Someone else on the forums had her vision deteriorate from "fine" to "needs surgery" in just a few months - and they should add you to the waiting list as soon as you complain it is affecting daily life.

  • My ophthalmology surgeon Mr Tarun Sharma (in Worcestershire) knows about my taking Pred and hasn't commented, so I have presumed he wasn't concerned at my old dose, or knows I really need to take it. (He is a respected specialist in Glaucoma). I'm worried about increasing. If you do get any information at Moorfields about what may be a seriously risky Pred level, please could you post it? People here seem to say that side-effects at 7mg or below are minimal, I've just put myself up to 8mg split morning and night.

  • I'm currently at 18 mg and I would dearly love to be at 7 / 8! I'll certainly report back if there is anything of general interest, but I suspect he won't be able to comment on adverse effects at various levels of steroid, as we are all different in the way we react.

  • As I suspected, the consultant at Moorfields (Mr Bhermi) could not say at what level the steroids cease to give side effects. All he could do was say with some confidence that my cataracts were caused / made worse by them.

    The one positive is that despite 2+ years of GCA, my optic nerves seemed ok, and my vision otherwise was reasonably good. I suppose I can put that down to the protective side of pred.

  • However you look at it: cataracts can be dealt with and don't come back once you have synthetic replacements. GCA os a very different matter!

  • Hi Ronnie, I can't help you with advice except to say all the moorfields consultants are first rate and with eyes, unlike other health problems, you can always pay privately for consultations and even treatments if you want to and jump straight back into the National health service whenever for further treatment. Good luck.

  • It depends on the person - some people never have a problem at any dose, others will have problems at relatively low doses taken over a longer period of time.

    I'd look for a more helpful GP though - the fact your symptoms are returning at lower doses of pred seems fairly indicative of PMR that is still active so seeing another rheumy probably won't help UNLESS a rheumy would try you on "steroid sparing" medication to see if it helps you manage on a lower dose of pred. The GP can't do that but it is really about the only option.

    You can, after all, never have a definitive diagnosis of PMR, the rheumy saying "presumed PMR" means you have all the signs and symptoms and no evidence of any of the other causes of PMR. And a GP is presumed to be capable of managing PMR.

  • Thanks everyone for giving me your thoughts. My Glaucoma dates from 2008 - should have made that clear. I'm tempted to try splitting the dose on 8mg. I tried this before when on 4.5 and that didn't work but the higher dose might. I don't thnk I'll find a better Ophthalmologist but he has never picked up the risks associated with pred. The only Dr. who has was an Orthopaedic Surgeon while discussing my shoulder rotator cuff tears - it's made them unrepairable!.

  • I have been on eyes drops ever since being on preds, eye pressure was up again last week ( hospital eye clinic ) now changed my drops to LUMIGAN and pressure must be going down as eyes feel great now !! And have to go back in 3 months , hope things get better . We know more about PMR and GCA than some doctors, you can only go forward now you are on this forum !! Good luck

  • Hello Margaret1951, I have been on Lumigan for 9 years, then 2 more sets of drops added over the years. After I started on Pred, drops no longer controlled the pressure in one eye, (so I've had a Trabeculectomy) but I don't know how much effect the Pred had, and no-one has told me. Make sure they keep your pressures monitored, there is definitely a risk but it seems uncertain at what level. I'd be very interested to know what dose of Pred were you on when your pressure first went up? And I can't tell myself what the pressures are doing, nothing feels any different.

  • I originally started on 60mg just over 4yrs ago and hospital eye specialist day after I got diagnosed !! Eyes and what I thought were migraines I had everyday, silly me went Spain for a month so had it for 6 weeks before I saw my doctor, she went mad with me for not going up there. She diagnosed me right away hence on 60mg, but I felt so much better the first week after the preds ! Then had to go for a biopsy up my hospital which terrified me as having a someone cut into your is no joke being awake.

    I am now down to 7.5mg but following the lovely people on here advice at going slow on them.

    Today started 7.5 then next 2 days 7mg then 7.5 again and hope it works !! As I cannot normally get below 7.5 as the GCA and PMR flares up again.

    But eyes were bad right from the start as hospital said I could of gone blind !! But they still tell me preds do affect the eyes, I have start of glaucoma also.

    I do go regular the hospital and due for my diabetic one this month so fingers crossed ! They also told me I have the start of cataracts, I have just turned 66 so it all scares me more than ever if I lose my sight.

    So I can't really say if it is the preds right from the off ,but hospital say eye drops everyday while on preds.

    Never ending, all I want is to go in remission which has never happened yet.