Tapering and sore eyes : Can anyone tell me what is... - PMRGCAuk

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Tapering and sore eyes

Rosshigh profile image
37 Replies

Can anyone tell me what is the average time on 15mg before reducing as still struggling to reduce after 3 months. Also has anyone had sore eyes since going on steroids. My eyes are sore, dry and irritated.

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Rosshigh profile image
Rosshigh
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37 Replies
DorsetLady profile image
DorsetLadyPMRGCAuk volunteer

Usual time for initial dose is 4-6 weeks - if you are still struggling then perhaps you need a higher dose. Although 15mg is a common starting point it’s not always enough - have you discussed with doctor?

As for eyes, quite common, use an eye wash or drops - talk to

pharmacist and explain your symptoms.

Rosshigh profile image
Rosshigh in reply to DorsetLady

Thanks for your reply. I am trying to reduce using your tapering schedule and am on week 2 of 13mg. Will be speaking to gp in a few days so will talk to him but want to get down a bit as feeling a bit down and putting on weight too☹️. Was thinking of seeing optician to get eyes checked too.

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to Rosshigh

Okay - did the initial 15mg work though? If it didn’t clear out built up inflammation and then also control new daily addition you will struggle. Good idea to see optician - he may suggest specific eye drops.

Rosshigh profile image
Rosshigh in reply to DorsetLady

Yes 15mg was amazing and took away pain and stiffness within about 6 hours. Just disappointed I can't get down a bit without feeling tired and achy tired legs but will persevere and maybe stick at 13mg for a while and see if things settle. I am so pleased I found this forum and have now become a member.

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to Rosshigh

Good on forum /member.

If 15mg worked, then strange you are having such an issue reducing .... are you sure you aren’t over exerting yourself?

How have you got to 13mg - I know you are using my slow taper...but are you trying 15-13?

Or 15-14-13?

Former may have been too big a reduction.

Rosshigh profile image
Rosshigh in reply to DorsetLady

Yes gp wanted me to go to 12.5mg so compromised with 13mg. Should I persevere or maybe go to 14mg for 5 weeks as per schedule?

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to Rosshigh

If you are struggling, might be with going to 14mg and see if there is any significant difference.. again 15-12.5 might be recognised, but doesn’t work for all!

Rosshigh profile image
Rosshigh in reply to DorsetLady

Thanks DorsetLady again. Will suggest that to gp and try it. Just get a bit bogged down with knowing what to do for the best.

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to Rosshigh

Yes I know, but the longer you go on the better you will get to know your illness, the better you will cope.

Much like having a baby.....mind boggling at first, but you soon get into the swing of things!

Rosshigh profile image
Rosshigh in reply to DorsetLady

Very good analogy!! Just feel I am constantly thinking about it which is not ideal but like you say hopefully get the hang of it. X

SnazzyD profile image
SnazzyD in reply to Rosshigh

My tear film all but upped and left and it was dose dependent getting better as I reduced. I had watery eyes drops by day and goopy ones by night from the optician. Re weight gain - Try cutting out carbs like rice, pasta, potato, flours and of course sugar. Pred is a different beast and just eating sensibly usually doesn’t cut it for many because Pred causes spikes in blood sugar before you eat anything and eating carbs compounds the issue.

Rosshigh profile image
Rosshigh in reply to SnazzyD

Thanks for the advice. Definitely will need to cut down on carbs as feel much hungrier especially in the evening. It is tough constantly battling with steroids and thinking about dosage. Really gets you down.

SnazzyD profile image
SnazzyD in reply to Rosshigh

Oh yes, tell me about it. However, during the nightmare of high doses I did find comfort that at least I was able to control some of the bad effects like diabetes and the add ones with weight gain. It was something I could do and I am so glad I did. I still ate heaps as long as it was protein (meat, nuts, some pulses), oils, veg and some fruit (mostly berries). I still had a couple of squares of 85% dark choc a day and a couple of small glasses of wine a week.

Rosshigh profile image
Rosshigh in reply to SnazzyD

Glad you're still having a couple of glasses of wine!! I only have a couple at the weekend just feel some form of normality. Like the chocolate bit too. Nerd some pleasures in life.

YuliK profile image
YuliK in reply to Rosshigh

Please don’t rush your reduction of Prednisone. Even if your GP recommended you to reduce quickly.

Only someone who has had PMR or a knowledgeable rheumatologist can tell you what happens if you reduce too quickly.

YuliK 😷

Your eyes are probably dry. I have the same problem.. probably changes of the weather.

I use eye gel drops. It really helps.

Rosshigh profile image
Rosshigh in reply to YuliK

Thanks Yulik think that may be the problem. Too rushed. I appreciate all the advice you get on this forum. Invaluable.

jaycee444 profile image
jaycee444

No sore eyes from Prednisolone but very sore with Omeprazole so stopped taking it .

Rosshigh profile image
Rosshigh in reply to jaycee444

That's interesting as I take omeprazole. Will mention it to optician thanks.

jaycee444 profile image
jaycee444 in reply to Rosshigh

Yes had trouble from day one with Omeprazole. Apparently its a problem with all PPIs. goodhopeeyeclinic.org.uk/me...

Rosshigh profile image
Rosshigh in reply to jaycee444

Thanks for that will check website and speak to optician tomorrow.

PMRpro profile image
PMRproAmbassador in reply to jaycee444

How strange - not one I've heard linked before!

jaycee444 profile image
jaycee444 in reply to PMRpro

Was prescribed Prednisolone which dealt with PMR pain same day. A few days later Omeprazole was added and within a few hours of first dose my eyes were really really red and sore. Refused to take any more and used Diet (yoghurt) to take my Pred with. Looked up info about Omeprazole and found that all PPIs can make dry eye problems worse .

Rosshigh profile image
Rosshigh in reply to jaycee444

Thanks my hubby takes omeprazole too but doesn't seem to have a problem with his eyes but will mention it to optician definitely.

jaycee444 profile image
jaycee444 in reply to Rosshigh

Think its the same as with all drug side effects - some of us will get them and some wont. Not sure but I dont think that Omeprazole should be stopped suddenly so bear that in mind.

Rosshigh profile image
Rosshigh in reply to jaycee444

Will do thanks

SheffieldJane profile image
SheffieldJane

It is advisable to see a well equipped Optician for eye health checks, more regularly.A number of things can go wrong with our eyes with Pred such as dry eyes, Glaucoma and cataracts. I pay £40.00 for a check up. Dry eyes and cataracts were diagnosed. I use Thealoz Duo eyedrops - the best so far. An optician maybe the first to spot signs of GCA in the temporal artery as well.

Rosshigh profile image
Rosshigh in reply to SheffieldJane

Thanks for advice. Will make an appointment with optician in the first instance and take it from there. Many thanks

PMRpro profile image
PMRproAmbassador

It might be the steroids or it might be the PMR - autoimmune conditions are often accompanied by dry eye syndrome.

I had a 6 hour miracle with 15mg but it took me 4 years to reliably get below 10mg - and I have always required around 10mg - I got to 5 some years ago for a couple of years but then had a reactivation of the PMR symptoms and had to go back up. Since then I have had a couple of flares and each time it is harder to get lower and since the beginning of last year the combination of OH being ill and Covid has set me around 15mg and I cannot get lower without overwhelming fatigue and a few PMR niggles.

And yes - cut carbs - it does work!

Rosshigh profile image
Rosshigh in reply to PMRpro

Thanks PMRPro I have made an appointment with optician to see what they say. Still struggling to get my head around not being able to reduce as quick as I would like and what gp would like too. Think I worry that gp will force me to and not give me the dosage I need. Am I being silly? I will definitely try to cut carbs but difficult when hubby likes his carbs!! Maybe get him to start making his own dinners 😆. Sorry you're struggling too. How come some people get over it quickly and some don't? Most of my friends seem to think it will go away and don't understand the illness at all. Hope your OH is doing better and that you feel better too x

PMRpro profile image
PMRproAmbassador in reply to Rosshigh

There are probably 4 or 5 different versions of PMR - and one appears to be a long term one that is quite difficult to control with pred.

If you have the discipline it isn't difficult - my plate is filled with protein plus low carb veg and salad. I make his portion of carbs, potatoes or pasta mainly. Many dishes can be adapted to make them lower carb. And portion size is also important of course - except for salad and some veg!!!

Rosshigh profile image
Rosshigh in reply to PMRpro

Thanks for that. Will try and substitute salad for myself instead of pasta and hopefully will manage to resist rice and pasta altogether. Didn't realise there was more than 1 type of PMR. It must be difficult to know then which one you have and how to deal with steroids. It is all consuming thinking about it. Ps will try and curb portions too!!

PMRpro profile image
PMRproAmbassador in reply to Rosshigh

It is a fairly new concept amongst the rheumies but they are coming to the same conclusion I came to several years ago!

Rosshigh profile image
Rosshigh in reply to PMRpro

That's interesting

piglette profile image
piglette

As you will appreciate 15mg for three months is quite a long time to be stuck on that dose of pred. However from bitter experience I had trouble reducing at the beginning as the rheumatologist was asking me to reduce in much larger chunks than my body liked. All he wanted was to get me to 10mg as fast as possible. If it were me at 13mg I would sit there for four weeks or so then try say just a 1mg reduction and take it really slowly. You may prefer to go faster. I had sore eyes and was told it was a side effect of the steroids.

Rosshigh profile image
Rosshigh in reply to piglette

Thanks Piglette I will stick at 13mg for a few weeks thanks and see how it goes. Thanks for info on sore eyes due to steroids too. Maybe I'm expecting too much from lower dose.

piglette profile image
piglette in reply to Rosshigh

Things will improve, sadly it just takes time. Good luck.

Rosshigh profile image
Rosshigh in reply to piglette

Thank you. Glad I found this forum. I have learnt a lot x

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