Pmr gca and glaucoma

[lyndamcw]

Does anyone know what is the lowest dosage of pred that it is safe to be on for GCA? I am currently on 15 but hoped to reduce further as I now have glaucoma caused by the steroids

Thanks

Lynda

[PMRpro Ambassador]

There is no "lowest dosage that is safe for GCA" - you need the dose you need to manage the symptoms. If the GCA were to flare even the 15mg you are on at present wouldn't necessarily be enough.

You should have been put onto eye-drops to manage the eye pressure - it doesn't necessarily mean you have to come off pred. Do you really have glaucoma or "just" raised pressures? There is a difference but some people refer to raised pressures as glaucoma.

[lyndamcw in reply to PMRpro]

Yes I have the eyedrops.I am in Thailand just now and ophthalmologist diagnosed wide angle glaucoma caused by steroids but says he is almost sure it will go when the steroids go leaving no real damage...but must stay on pred for the GCA

[Roltuba in reply to lyndamcw]

Sorry to be dramatic but Glaucoma means irreversable damage. Ocular hypertension can be well managed and if your pressures come down you should be fine. Prednisolone can increase eye pressure and it is vital that your Opthalmologist monitors you very regularly. Best of luck and I really hope what you've got is hypertension. Mine has progressed to quite serious glaucoma.

[cjatthesea in reply to PMRpro]

This is a subject I need to understand better. Hubby and I just discussed it last evening. Dec 2014....diagnosed with GCA and PMR...put on 60mg Pred. I had gone undiagnosed for probably 20 months. In Mar. 2015....Neuro Opthalmologist was appalled that my optic nerve damage had not been addressed sooner. Had some vision loss due to a lapse of Pred. dosage. ( I thought ). Dr. decides I have glaucoma and puts me on drops. Now, I wonder which came first. Was glaucoma caused by Pred ? Or by older ( during 20 months of no diagnosis and no treatment ). GCA damage ? Hope I am making some sense. A case of the chicken or the egg....first ?

[HeronNS in reply to cjatthesea]

Raised optical pressure is a known but apparently not common side effect from pred. On the other hand, glaucoma is also common amongst us older folk. My pressure went up significantly when on my higher doses of pred, was monitored carefully by ophthalmologist, and it dropped close to my long standing normal as pred dose decreased, so pretty obvious pred was the culprit here. BUT at last check up the pressure had gone up again, marginally, but enough that the eye doctor still wants to see me in a year rather than the routine two.

[lyndamcw in reply to HeronNS]

My pressures were normal before pred but on high dosage of 60 they increased now on way down both steroid dose and pressurez

[Roltuba in reply to HeronNS]

If you have actual Glaucoma, I'm sure you should be seen sooner than a year. If it's Ocular Hypertension, make VERY sure everyone knows you are on steroids as you should also be monitored more closely. I have lost quite a lot more of my sight I think because this was ignored (someone did not read my records and told me to go away) and have made a formal complaint.

[HeronNS in reply to Roltuba]

Roltuba, are you replying to Lyndamcw or to me, Heron? If me: I don't have actual glaucoma. I just had pred induced increased ocular pressure which went away, and now a slight increase made my doctor think I should be seen more often. It is still in the "safe" range. If for any reason I have to raise my pred dose again I'll be sure to go back to see him right away. This ophthalmologist actually gave me a little lesson on prednisone when I first went to see him to check on the possibility of this side effect, and also to see if there were any signs of GCA. Had I not already learned it all from my own reading, the information he gave me was far more detailed and useful than anything the GP mentioned. She had only told me about the possibility of developing osteoporosis, did not mention any other serious potential side effects, nor the possibility of GCA being present. So I have a lot of trust in his judgement. My pred dose is currently very low. But thanks for your advice.

[Roltuba in reply to HeronNS]

Sorry HeronNS, this thread has become rather complicated! My wife and I really just want anyone who sees it to make sure they get their eye pressures looked at regularly while on Pred. I am still having a rather torrid time with my glaucoma (which had started well before PMR) and will never know if the ignoring of my notes led to my losing more sight in one eye. My opthal surgeon has clearly said that for my damaged eye the pressure target was 16, and I was asked "why are you here?" by a Dr I hadn't seen before when referred by the Optician at 22. Kowing what I know now, I should have made a big fuss. We have to do a lot of looking after ourselves with this wretched condition. I hope you continue to be looked after well. Anyone with both GCA and Glaucoma has even more of a dilemma, Glaucoma (not Ocular Hypertension) really is not a minor detail as some seem to be saying and can also cause blindness.

[HeronNS in reply to Roltuba]

It sounds like you had a pretty bad time. Thank you for "keeping an eye" on us! My husband has glaucoma, and interestingly the cataract operation he had a couple of years ago appears to have relieved the pressure in his affected eye so he no longer needs drops - just has to have regular checkups to make sure it stays okay. he did lose some clarity of vision in that eye, however, despite good care.

[PMRpro Ambassador in reply to cjatthesea]

I don't THINK GCA causes raised pressures - totally different thing and it is the blood supply to the optic nerve that is affected - well outside the eye.

But it is possible to develop AION even without GCA - so there may be an element of that too.

[lyndamcw in reply to PMRpro]

No its not the GCA that caused the pressure its the side effect of the steroids

[Celtic PMRGCAuk volunteer]

Lynda, whilst I was on treatment for GCA with doses of Prednisolone starting at 40mg, I was also diagnosed with glaucoma, or at least that is what is on my records. But even prior to GCA, I did have raised pressures on occasion. I use daily eye drops for the glaucoma. I do understand your concern because it is alarming being diagnosed at the same time with two different conditions both with their risk to eyesight, but I feel strongly that it is important to place more emphasis on being on the correct amount of Pred to keep the inflammation of GCA under control in the first instance, than to be too concerned about glaucoma. After all, as your ophthalmologist has already advised, it is quite possible that your glaucoma will resolve once off steroids, but meanwhile your eyesight will be at risk from GCA if the inflammation isn't kept under control.

[lyndamcw]

I agree that the GCA must take priority..I have been reduced from 60 gradually and now on 15...I have the drops so that is helping with the pressure problem...and I seem to be ok Gca wise on that dosage.some days are better than others but on the whole the drops have helped to counteract a bit of the pressure...Thank for your interest

[DorsetLady PMRGCAuk volunteer]

Hi,

I had raised pressures on Pred, but they reduced back to normal when I got down to about 9mg. Not bad enough for drops though, so you may need to get a bit lower before yours are okay.

[lyndamcw]

Thanks for that x

[Ronnie101]

I have raised pressures, and vision disturbances, but no inflammation markers, and have been yo-yo ing between 15 and 30 mg of pred. Neither Rheumatologist nor eye specialist can say definitively what's going on. Latter does not think raised pressures are pred related, more to do with age. Former thinks vision problems are possibly pred, not GCA, related and is reluctant to agree to me increasing pred in response to visual disturbances. I've no idea what's going on and left worrying !! So, Linda, we're all in same leaky boat!

[lyndamcw in reply to Ronnie101]

It's a difficult one but I have blamed the pred all along as my eye pressures were fine before it....

[Doralouise77]

I was just recently diagnosed with glaucoma and was told it probably wasn't GCA or Prednisone related but in my case genetics as my dad had it....high pressures are only a part of a complete examination for glaucoma....mine weren't that high at 20 but the diagnosis was made from other tests including the visual field test which is definitely recommended for GCA patients. I'm being referred to a neuro-opthamologist for some visual changes that might be related to the GCA though.

Cheers

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