Crohn's, GCA and PMR...want to have my cataracts removed

[Solstice85]

I am currently on prednisone, started in October at 60 mgm and now down to 20 mg. My eyesight is getting worse, and it sounds like I will be on prednisone for several more years according to my research. I have asked my rheumy about the surgery, he said not until I am stabilized, which could be a year or so. My eye surgeon says, no problem with the surgery, just have to find a window that it can be done in. I am so confused. I look like Fiona, I am serious when I say that. I don't mean to hurt anyone, I am so swollen in my face, ankles, throat. I feel miserable, but I need to be able to see for my job. Help, I am sick.

[SheffieldJane]

It is difficult when you have 2 specialists who disagree with your treatment plan. What does your Rheumatologist mean by stabilised?

There are plenty of people on here who have had their cataracts done whist on Pred with active PMR/GCA. Unless you have special difficulties I would imagine that would be the sensible way forward. Question your Rheumatologist further to find out what his /her concerns are.

[Hidden in reply to SheffieldJane]

Hubby had is eye injection for his Macular Degeneration on Christmas Eve. For a few weeks he's been saying to me his other eye doesn't seem very good now. After his injecion (a scan was taken beforehand) the nurse said for him to mention his other eye at his next appt. Our eyes are precious so I decided to 'phone the hospital and ask what the scan turned up with his other eye. Very nice nurse told me she'd get the doc to look at it and call me back, which she did. She said End Stage. I said wouldn't an injection help, no was her reply. Why the heck didn't I ask End Stage what, not like me at all. Jen said let's get him to the opticians and get another scan taken and find out what's going on. Turns out he has a cataract which is ready for surgery. Why on earth didn't she tell me this. I was imagining him losing the sight is his good eye. I don't think Macular Degeration gets bad that quickly, over a period of about 5 weeks. Now poor man has to have this done, as if he doesn't have enough going on right now. Endoscopy next week, and first ever lot of physio next week too, bearing in mind, his femur surgery was last June and hip was operated on in Oct.....so many oldies need physio, just have to be patient I suppose. I'm having an eye test next week and dreading being told I have cataracts too. Only having the sight in one eye is a little worrying.

[SheffieldJane in reply to Hidden]

The poor communication that we are subjected to is infuriating. Good luck with your eye test. 🌻

[Hidden in reply to SheffieldJane]

Thank you Sheff

[PMRpro Ambassador in reply to Hidden]

I would report that conversation with the nurse - who I suspect should never have opened her mouth in the first place but to do so with an unexplained "end stage" was downright incompetence.

[Hidden in reply to PMRpro]

Yep, sure was, scared me so much. I defo will be going with him in a few weeks for his next appt. But, before I say he's been for another scan, I will ask what exactly is wrong with his eye....then see if we're told it's a cataract. So daft telling me end stage without explaining what is end stage.

[piglette]

I would have thought it would be your eye surgeon who would be more worried as he is the one who will have problems if things went wrong, so the fact that he is happy seems fine. Have you told your rheumatologist that the eye surgeon is happy?

[Solstice85 in reply to piglette]

Oh Lord no, I'm afraid he will fuss at me.

[Koalajane]

I have PMR and am having my cataracts done very soon, the first one at the end of the month. No query about my PMR

[gardener96]

Can your eye doctor write to the rheumatologist and ask what his concerns are, rather than you being the go between with information.

[Solstice85 in reply to gardener96]

In the states, doctors rarely confer with each other. We have what they call a "PCP" primary care physician, and they are supposed to be the go between. HAH! Good luck with that, our system is not what it should be.

[DorsetLady PMRGCAuk volunteer in reply to Solstice85]

TBH a lot of health systems aren’t what they should be….

[PMRpro Ambassador]

One is left to ask what on earth the rheumy is on about!!! It is the eye specialist who needs to worry about cataract surgery.

If you have gained weight while on pred, try cutting carbs drastically - especially processed carbs and added sugar, limit most fruit (lots of sugar). That also reduces salt intake which also contributes to puffiness when in pred. The chubbiness around the face is due to fat deposits which are indirectly due to being on pred - any excess glucose present in the body is stored as fat in specific places so cutting dietary carbs helps that. It is possible to lose weight while in pred, even at higher doses though it is harder.

[2013mayo]

I had my cataracts done while on prednisolone, I was told I had very fast growing cataracts and they needed to be done urgently. There was no questions about me being on pred.

I hope you get the surgery done soon, it only takes a short while to do and then you can see properly again.

🤞🍀🍀

[Solstice85 in reply to 2013mayo]

I am getting ready to get them done. It is the difference between my face swelling up even more and not being able to see.

[2013mayo in reply to Solstice85]

I would get them done, it’s like a wonder to see normal again, I was really struggling with my sight.

I did have a few problems afterwards but it soon cleared up.

Take care

[SnazzyD]

I don’t see what it has to do with your Rheumatologist and surely the eye surgeon would ask them what the issue was. I have to say though cataracts aside that my eyesight was all over the place especially on high doses. I couldn’t refocus quickly when I changed the depth of field I was looking at. It made me feel motion sick if I tried to focus on anything I was walking past. The good thing was that as the Pred dose came down it improved but the annoying thing was that I kept needing to change my glasses prescription. This I didn’t do optician said I would end up paying a fortune because it would keep changing rapidly until the dose got lower.

Sadly a side effect of Pred is facial swelling and weight/fluid gain. This can be hugely helped (but not completely got rid of) by severely cutting out salt and carbohydrates, of course with advice given your Crohn’s. If I had even a tiny bit of salt on high doses of Pred I could really tell, especially around my eyes.

I know you say you need to work, but GCA is a serious condition and it isn’t a case that you can easily take the pills and then crack on. What you don’t want to do is to keep thrashing your body, getting a GCA flare and ending up on high doses for longer. Have you taken any decent sick leave? I have to say that to be at 20mg by now is pretty fast too so take care.

[Solstice85 in reply to SnazzyD]

Thank you so much for the reply. I know this is really dumb, but the rheumy doesn't act like the GCA is a big deal. I was so sick when all this happened and messed up with drugs, I couldn't make sense of what was worse, the PMR or GCA. I do know the problem with GCA is going blind, that is huge! I really appreciate your comments. I find I understand more on this website than I do after I go to the doctor. I still don't have the last two lab results, and no one called to give me the numbers. This is a mess. Have a good day.

[Hidden]

You poor thing, you have a lot going on. It's not like a general anaesthetic is used for cataracts, so can't see what the problem is. Do hope they manage to sort you out as not being able to see properly is awful.

[Solstice85 in reply to Hidden]

I'm going for it.

[DorsetLady PMRGCAuk volunteer]

Agree with SnazzyD your reduction has been very quick, which may be contributing to your eye issues as well as high starting dose …and has advised on weight control.

..and what does your Rheumy mean by “he said not until I am stabilized, which could be a year or so’… your original symptoms should have been stabilised by the initially high doses, you then reduce slowly to keep them under control [or stabilised].

If he means in remission and off Pred before you can have a cataract operation then he is talking rubbish.

Many on here [including myself] have had the operation whilst still on Pred…it’s not like an invasive operation, or likely to adversely affect your GCA. Your eye surgeon is the expert in this, think he needs to advise Rheumy accordingly.

[Solstice85 in reply to DorsetLady]

“he said not until I am stabilized, which could be a year or so’, NO kidding. This could be 2 years and then remission and then maybe here it is again. I think he is just trying to be careful with what he recommends. Thanks so much.

[HappyDiamonds]

I have GCA and had a cataract op 2 weeks ago, the second eye is being done in 2 weeks time. In July 2022 I had an operation for a macular hole. All done whilst on Pred and Tocilizumb with out any concerns from the eye surgeon or my Rheumy. It was successful and Im over the moon with the result. Good luck I hope it goes well and your as pleased with the result a I am.

[Solstice85 in reply to HappyDiamonds]

I'm going to stay on this site, I appreciate everything that you have said, and it gives me peace to know I am not the only one in the hot soup with this mess.

[Solstice85]

Thank you so much, the difference in communication between doctors can be scary.