Cataract surgery on large dose of prednisone - PMRGCAuk

PMRGCAuk

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Cataract surgery on large dose of prednisone

casse profile image
25 Replies

Have been reading about people having cataract surgery but basically on around 10 or 15 mg of prednisone. Has anyone had cataract surgery on 30 or 40 mgs? Just not sure what to do will see Eye surgeon Thursday and tomorrow see Rheumy about maybe going on Actemra Was advised to get cataract surgery before going on Actemra. Still on 34 hoping to go to 33 on Thursday. Will see what they both have to say, but sometimes think you have to be your own doctor, actually know more about you disease and your body then they do. It is very stressful. This site is absolutely amazing and I wish I could meet all of you. This site is absolutely amazing and I wish I could meet all of you. Again, thank all of you who have been such a support and giving me so much knowledge it is greatly appreciated!

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casse
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25 Replies
DavidMF profile image
DavidMF

Casse I've had PMR for 20 months, currently coming down (Again) at 16.5mg Pred. Cataract worsened with Preds. Read Kate's book, with her warning, triggered a self funded operation and had a review with the eye surgeon 10 days ago. After he was happy to proceed, I asked the question around Steroids & risk of infection. He was very reassuring and discussed the issue and commented how procedures over the last 5 years had, reduced the risk to such a level that he had no concerns.

He was very interested in PMRGCA.uk hadn't heard of them, but the previous day had attended a meeting which had stated they were starting a trial on fast response to GCA identification. He sounded really excited and positive.

Not sure how your meds. will change any decision, but I was certainly happy to go ahead. Looking forward to September and a new view on the world.

Best of luck with your team.

gilpet profile image
gilpet in reply toDavidMF

Good luck with the cataract op, David. I can't tell you just how different your new view on the world will be - 9 months on from when mine were done and it still amazes me.

casse profile image
casse in reply toDavidMF

Thanks David, saw Rhumy yesterday and is OK with her see eye Surgen tomorrow and my normal 3 week blood test on Fri. Hoping if that is OK they will proceed. Was on 60 iDecember 2014 got down to 15 mgs this January but was two fast, second flare. Thanks for your encouragement😉

casse profile image
casse in reply toDavidMF

Wanted to tell you I had my right I cataract removed on Monday and I'm doing fantastic. Resting now but can see it is just on believable

PMRpro profile image
PMRproAmbassador in reply tocasse

That is wonderful!!!! Now - just because you can probably see some dust DOESN'T mean you are to get the cleaning gear out! Keep on resting!

casse profile image
casse in reply toPMRpro

Thank you. Yes I can see the dust you're funny. This eye is more for reading my other eye is for distance, he kept them the same way which is great so I can see both hopefully without glasses?

PMRpro profile image
PMRproAmbassador in reply tocasse

Everyone says they can - and one lady was furious with her daughter for "letting me buy those awful curtains"!

naturagirl profile image
naturagirl in reply toPMRpro

hahahaha, thanks for making me laugh.

xxx Tess

DavidMF profile image
DavidMF in reply tocasse

Great news, glad your vision has improved, I'm looking forward to September.

casse profile image
casse in reply toDavidMF

Hoping September yours turns as well as mine. Only the third day but so far is great.

Hi Casse, I have GCA since 2010, I was on 60/50/40mgs pred for a long while resulting in cataracts in both eyes. I think I was on 35mgs when I had the surgery. The procedure itself was very easy, no discomfort at all with excellent care and follow up from the Eye Clinic and to top it all I have the eyesight of a teenager !

Good luck with the decision making.

Maryjayne

casse profile image
casse in reply to

Letting you know Mary Jane my cataract surgery today's ago went so so well I am ecstatic

in reply tocasse

Glad it went well and that you are pleased. One less problem to worry about, its just the rest.....

casse profile image
casse in reply to

Thank you Mary Jane I am just taking it easy but so pleased now if I can just cut down from the 34 mg of prednisone instead of going on at ActemraI will be such a happy camper.

gilpet profile image
gilpet

I had cataract surgery on both eyes last year (first in September and second in October), at the time I was on 30/35mg daily. I was told by the surgeon that it made no difference and I certainly had no ill-effects, my ops were both done under local anaesthetic but I'm sure that if a general had been involved that would have made a difference and the meds would have needed to be adjusted. Good luck with the cataract surgery, I was very, very nervous before the first eye was done but no nerves at all for the second, just excitement about the outcome. I won't pretend it's pleasant but it certainly isn't painful, I honestly didn't feel any pain at all and it doesn't take very long. I know that wasn't your question but it doesn't hurt to have re-assurance! One tip - because your eye is continuously being "rinsed" I came out with a soaking wet top from the first op (but not the second) so take another top to change into afterwards just in case.

casse profile image
casse in reply togilpet

Just sharing my good news with you, my cataract surgery was a great success two days ago. Resting now but I am so glad I had it done is amazing how well I see now.

casse profile image
casse

Thanks Gilpet I am so looking forward to it. Had my other eye done about five years ago but ended up for several years being colorblind colors finally came back they had no explanation for it. Just a little nervous I don't do well with surgeries. First nerve block they accidentally collapsed my long at 100%, released me from hospital too soon collapsed again, then got takotsubo ( form of heat failure) though, from the two collapsed lungs. Good thing that reverses itself though. Could go on and on LOL I've had some other bad experiences but I'm sure I will be fine and will be so good to see out of that bad eye now. Thank you again I am very encouraged!

naturagirl profile image
naturagirl

Some people have hardly any side effects as result of taking Pred.

I was on 15mg Pred. for a year and need cataract surgery in both eyes as a result of it. I hate to think what 40mg will do. My support worker told me that every older person who was on Pred, for a longer period of time ended up with Diabetes. I had every side effect under the sun and if anyone wants to see what Pred. has done to my body and face I am happy to supply you with some photos of my face, providing you can stomach it.

In my undervalued opinion that stuff is poison, but half of the world seems to get it subscribed by their Doctor as there is nothing cheap enough the pharmaceutical benefit scheme would accept to give to us for our suffering. Sometimes I wonder who has shares with the company who produces this stuff.

My doctor told me that he has never seen such a bad reaction to it and I insisted to get off it, which is only possible in stages, not suddenly.

My new Doctor wants to put me back on. Over my dead body!

Good luck to you all and may God bless you with good health.

PMRpro profile image
PMRproAmbassador in reply tonaturagirl

Think your support worked needs a bit of educating - there are many people on these forums who are over 65 who have been on pred some considerable time who have no sign of diabetes at all. I know one lady of over 80 who has had PMR twice and been on pred for 3 or 4 years each time - no osteoporosis, no cataracts and no diabetes. Just liver problems when her GP tried to get her to take "much safer paracetamol".

As for "there is nothing cheap enough the pharmaceutical benefit scheme would accept to give to us for our suffering" - there is nothing. Period. End of. Plenty of other drugs have been tried, none have done the job reliably, particularly in GCA where, whatever the side effects of pred, there are very few worse than the ultimate side effect of GCA: irreversible blindness. I'll take a fat face over that any day.

There is a light on the horizon and it IS being used for GCA already in the USA - tocilizumab. Already it will be used in the UK for Takayashu's arteritis, which is the same as GCA only even worse, but the decision not to use it for GCA was made before the results of the Phase 3 trial were known, they will be published in November and may result in a reconsideration.

naturagirl profile image
naturagirl in reply toPMRpro

Really? Thanks for sharing that. The people over there must have a different constitution.

PMRpro profile image
PMRproAmbassador in reply tonaturagirl

You are in the US I assume? I suspect it may have something to do with the dietary differences between the 2 sides of the pond. We, especially our generation, really do eat far fewer processed carbs than I see being consumed in the USA when I am there. There is also a far lower use of HFCS in manufacturing, it is barely used at all in Europe comparatively speaking, and it is heavily implicated in the development of insulin resistance and subsequent Type 2 diabetes.

naturagirl profile image
naturagirl in reply toPMRpro

You assume wrongly. I am in Australia and grew up in Northern Europe on a very healthy diet of black bread and unprocessed healthy food, most of it grown in our garden on natural compost.

Nice try. It doesn't matter how you you twist and turn it, but that stuff does more harm than good in my experience. But if it makes you happy I will keep that opinion from now on for myself, even so silly me thought HealthUnlocked was a place were people, who suffer certain illnesses, can exchange their experiences and opinions and not to promote certain medications.

Cheers Tess

naturagirl profile image
naturagirl in reply toPMRpro

You assume wrongly. I am in Australia and grew up in Northern Europe on a very healthy diet of black bread and unprocessed healthy food, most of it grown in our garden on natural compost.

Nice try. It doesn't matter how you you twist and turn it, but that stuff does more harm than good in my experience. But if it makes you happy I will keep that opinion from now on for myself, even so silly me thought HealthUnlocked was a place were people, who suffer certain illnesses, can exchange their experiences and opinions and not to promote certain medications.

Cheers Tess

PMRpro profile image
PMRproAmbassador in reply tonaturagirl

Take it as you wish - but this forum is to present the reality of PMR and GCA and its management. Which is, at the present time, a choice of pred or nothing since nothing else works. If you want to use nothing for PMR I really don't mind, I did for 5 years, In the case of GCA I do mind if you suggest it isn't good to use - that might condemn someone who decides not to to blindness.

We don't "promote" certain medications - unless saying it is the only medical option is promotion. I don't think it is. I responded in good faith to what I thought was a real interest - obviously it wasn't.

naturagirl profile image
naturagirl in reply toPMRpro

Hello dear.......???

THIS IS NOT ADVISE BUT SOLELY MY OPINION BASED ON YEARS OF EXPERIENCES.

Please don't be hostile because I dare to tell you my experience, which should be considered just as valuable and valid as everybody's . What I wrote is my, and lots of my acquaintances reality. As we are human beings, just like you, and not from another planet, it should be valid, just like your reality.

I am sadly aware of the fact that there is sadly nothing else available at the moment that is affordable to the average person, that helps against the terrible pain, except pain patches and I am also aware of the danger of GCA. According to my specialist there are medications that are less harmful, but also only affordable to the rich of our society. aS A PMR PRO I am sure you know of them.

Considering the terrible side effects I had, and I have seen on others, I just take my chances , just as I did with breast cancer when I refused Chemo and radiation and was told that I will surely die. That was 12 years ago. Today I am cancer free and can prove it. Neither the cancer society nor chemical factories that produce cancer fighting drugs, (all part of, what I call, the 'cancer industry') are interested in such stories. I wonder why?

"PMR pro' CAN WE NOW LET IT REST, PLEASE! i AM HAPPY TO STAY OUT OF THIS PRED' RELATED DISCUSSION!

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