Update on my cataracts- went to the hospital this week-10 days after my initial app. when I was told I needed the cataract op. Saw a different Dr & she said that they weren’t too bad, not any immediate rush to get them done'. Same dept, same hospital but diff Dr! She also took my eye pressures- not had this done before & she was furious that they had not been done - no one has done it since I started with all this. They were 32 & 31- apparently far too high, so I am now on Latanoprost eye drops to hopefully bring the pressure down. Since then, I have done some research myself & am feeling very worried about this pressure. She also told me that if it didn't come down then I would have to stop taking the steroids! I told her that I could not do that as it is the only treatment for GCA. She didn't seem to take it on board that I have to be on steroids for the GCA & told me that they are causing me real problems with my eyes. I'm now looking at maybe going private to see an Opthamologist to see what's what as I am not happy with the fact that I've had 2 different opinions & I'm not messing with my eyes! (I also have the option of different lenses if I do decide to go private which I don't with the NHS). I've also found out I can't have the op if my eye pressures are too high & that was never mentioned either! My Rheumy then rang me yesterday (having been informed about my eyes) & is once again determined that I should go on Methotrexate- to get me off the steroids asap. I told him I'm tapering slowly & would rather stick to doing this (after discussing it last month & telling him that I do not want to go on MTX.) I'm down to 17.5mg & am following DL slow taper method. Anyone else been in this situation?
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Janeval
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My pressures did go up early days - but fortunately not enough to need meds, and they returned to normal as I lowered the Pred dose.
Fortunately, or unfortunately whichever way you view it, because of sight loss I was regularly monitored by the ophthalmology department - and when my cataract started to need attention the pressure levels were okay.
But at your first appointment the knowledge that you were on steroids should have alerted the doctor to the fact that your pressures needed checking.
If they are too high, then I doubt a private ophthalmologist will be willing to proceed with replacement - but he give you a level where he will be.
Just for info, I was down to around 8-9mg when my cataract was done.
Thank you DL. It's just once again they all seem to be 'singing from a different hymn sheet'-i.e. different info from different Docs (same as with the GCA!) It really doesn't give me any confidence in them atall.
I go to the eye clinic regularly and have my pressures done. At my first appointment there my pressures were too high and an unpleasant opthamologist told me off and said I had glaucoma. At my next appointment I saw her boss and he said I don’t think you have glaucoma. Did more tests and I have thick cornea which cause it to look like I have high pressures. At my appointments I have my pressures checked and often have to remind them that my corneas are thick.
I had a complication with my first op and had to have a second one to sort it. I was given drops for eye pressure after and they really did work. I was given timolol.
I hope your pressures come down. I was on 5.5mg of pred when I had my first cataract op and on 5mg for my second. You are right on NHS you tend to get tithe lens for distance and need to wear reading glasses.
I would have thought that your pressures would have been checked at the opticians, it is a normal procedure at mine, along with wanting to do an OCT scan which I always refuse having had them done every few months at the eye clinic
I checked with my optician after I'd been to the hospital this week & I had my eye pressures done there in March -which were within the'normal range' R18 L19 & now I'm on these eye drops- see the Doc again in 3 weeks to see if the pressure has dropped. I'll make sure they are monitored regularly now as I had no idea what they were or what the significance of a high level was.
Yes it was & I don't know why. No explanations, nothing- just that she thinks the steroids don't agree with me (but she said it in medical terms & as I said told me I would probably have to come off them if my eye pressures didn't come down!) Obviously not enough understanding or knowledge of GCA - it really does make me feel as though I'm constantly wondering if anyone knows enough about this disease & if they ever listen to the patient? Quiet scary really...
Sorry to hear this about your eyes. Pressure should be between 10 and 21 ideally. I have glaucoma so get my eyes checked every six months and mine are 18 and 21. The drops you got will help to lower the pressure. I take Bimatoprost and Brinzolomide. Not sure this was related to my use of Pred...maybe aging. I get my pressures taken when I go to get my eyes checked at the opticians. I hope they get this in order for you.
My mother had glaucoma and so I have had routine checks with my optician for the past 20 or so years. It was never suggested to me when pred was first prescribed that I should make sure I have regular checks. Coincidentally I had a routine check a couple of months after starting pred and my pressures were up and outside acceptable bounds. Optician said it was probably the steroids but did another check the following week in case it had been a ‘blip’, it wasn’t. I was referred fairly quickly to the eye dept but then Covid struck and the appointment kept getting pushed back, knowing what glaucoma did to my mother I wasn’t prepared to lose time waiting and I went private and now have 9 monthly checks (was 6 monthly) with the specialist and have been on Latanoprost drops, which brought the pressures down and has kept them under control. We won’t know until I stop taking steroids whether or not they were the cause but the specialist is on the ball (or seems to be) with that. No pressure from her to stop steroids prematurely.
Interesting. They did ask me if there was Glaucoma in the family but as far as I know there isn't. As I said, the 2nd Optometrist didn't seem to know that I can't just 'stop' taking the steroids & my Rheumy seems to think the answer is putting me on MTX asap! I'm now down to 17.5mg after starting at 60mg in Jan this year, but I really do not want to go on MTX after what I've been reading & told about it. It seems as though he wants me off the steroids as soon as poss & the only way according to him is the MTX.
Except there is no clinical study I know of that shows it makes a difference in GCA. And the UK guru, Prof Dasgupta, was of the strong opinion it doesn't ... Even Actemra isn't 100% successful at getting all patients off pred.
Do you have any info on this that I could print out & take to my next app with my Rheumy or are there any national guidelines or anything? As I said, I do not want to go on MTX & I know he can't make me take it- even when I told him I am doing the slow tapering method he suggested going down by 2.5mg a week. I've already tried 3 times to get down under 20 mg but this time I am taking it slower which I am hoping will work. He( like many of them) is in a rush to get me down & off the steroids without taking into account that I am only 6 months in & of course I want to be off them but hopefully doing it so I don't have to go back on them at some point in the future!
He WHAT????????? Is he TRYING to make you flare? You couldn't even reduce at that rate if you were on Actemra.
I would say taking 6 months to get to 20mg is about par for the course. GCA is particular active for the first 6 months and very prone to flaring in the first 18 months. And the main cause of flares is attempting to reduce the pred dose too fast - even doctors acknowledge that. In PMR, those who apparently are able to get off pred in a year or so are known to be at a higher risk of relapse and reducing at more than 1mg per month below 10mg is predictive of flare.
This paper and approach to tapering is still in use by the author - who is now a consultant at Luton Hospital, specialising in GCA. Why? Because it works better than most ...
There are NICE guidelines and BSR guidelines but they all tend to say "aim to taper to 20mg in 2-3 months" but experience tells us that that all too often fails - leading to a return to a higher dose and yo-yoing which makes it increasingly difficult to taper again. The Quick method takes a full 4 months to get to 20mg from 60mg assuming only 4 weeks at 60mg, if there are still symptoms it might be longer and also no flares as the dose drops. 4 months compared to 2-3 months doesn't sound much - but it is almost double the time. And they found it resulted in 1 in 5 relapses instead of 3 in 5.
But the significant factor is that ALL suggested tapers say "the taper must be adapted to the individual patient" - but they seem to miss that.
There is some (IMHO) rather woolly discussion of MTX after Figure 2. They don't sound any more impressed with Actemra/tocilizumab either, suggesting MTX may be used as an alternative. Which I think is really stretching it ...
Exactly what I thought - he seems to be insistent that I taper quickly & because initially (when I hadn't found this site) I did try to get down to 20mg quicker than I should have done, then I had a flare - on 2 separate occasions. Now I know better and am trying the slow method & am tapering from 20 to 17.5 which I am hoping will be ok. However, in my Rheumys eyes, I need to be on MTx because I am not tapering down quickly enough! I can't win! Every time I see or speak to him I tell him that I do NOT want to go on Mtx but now I have the problem with my eyes, he's pushing me again. I really don't want to fall out with him but he's not listening to me.I have also tried to open the link you sent me (re Luton Hospital) above but it doesn't open - could you check it please ?
I have glaucoma so already on eye drops for pressure, prednisolone sent my pressure Sky high, 38 and 34, was on 3 different drops a day and emergency surgery to reduce pressure in left eye, removed cateract and put in 2 small stents to drain the fluid, I am waiting to have the right eye done, my pressure was high in the morning of the op but gave me extra drops to bring it down so that the surgery could go ahead, so far so good! My consultant knew that he was up against the steroids and due to me having GCA there was no way I could stop or reduce too quickly, it’s a difficult one as the pressure being to high can damage the optic nerve(which mine has) and can also cause you to loose sight, they should check your pressure again fairly soon to see if the drops are helping, and then you may need surgery with stents, good luck with it all
Janeval, Just a quick note: I have a higher eye pressure than normal, but also have a thicker cornea, consequently the ophthalmologists agree that a higher pressure is considered to be normal for me. No medication is necessary to bring the pressure down to what may be normal for the majority of people. My best to you .!
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