This could be worse

[ggmother]

So far I consider myself blessed that one eye still has good vision. A couple of years ago, I was diagnosed with Macular Degeneration (MD). So, I considered my losing vision in my left eye part of MD. However, when I started having flashes of light and a rapid decline in vision in the left eye, my ophthalmologist was called. On the same day I was seen, but having had symptoms for about 3 weeks, an appointment was made with a rheumatologist the following day. Within a week I had an artery biopsy. Yes, I have GCA.

I was started on prednisone with a 26 week withdrawal time. Also, I have begun an infusion of Actemra every 4 weeks for a year, which will be lowered over a period of time.

My left eye will most likely not recover full sight because of the 3 week time lapse of beginning the prednisone. Lesson learned is to seek help immediately when symptoms start.

My concern now is how the GCA will work with MD?

[PMRpro Ambassador]

I'm not clear what you mean by "My concern now is how the GCA will work with MD?". They are two different disorders - now you have a GCA diagnosis and are being treated it should not progress any further. The MD won't be affected by the GCA medication so all being well, you should be back where you were pre-GCA.

[ggmother in reply to PMRpro]

Thank you PMRpro for your information. Just was concerned about both GCA and MD having an affect on the retina at the same time. I will keep studying to see if they play nicely with each other.

[DorsetLady PMRGCAuk volunteer in reply to ggmother]

Studies say around 10% of GCA patients may have retina issues-but would have expected it to have already happened pre Pred.

[PMRpro Ambassador in reply to ggmother]

As DL says, it isn't common for GCA to affect the retina - the effect of GCA is more often on the blood flow to the optic nerve and so the transfer of signals from the optic centre in the brain which is in the occipital lobe at the back of the brain. That's why an occipital headache is significant in GCA - even if some doctors will try to tell you it is the "wrong sort of headache"! Because the temporal artery biopsy has become a gold standard, they think temporal headache is the only important place, But the TAB is done because while it often DOES show the giant cells, above all it is because it is superficial so easy to access and you can manage without that particular bit of artery.

allaboutvision.com/resource....

[PMRpro Ambassador in reply to PMRpro]

PS - being on Actemra should allow tapering of pred without a flare of the GCA. HOWEVER - some people have problems with the infusions in that their effect seems to wear off a bit towards the end of the month - infusions were never used in the clinical trial, it was weekly injections so any wearing off of the effect on the receptors was topped up weekly. And only half of patients get off pred altogether with Actemra. This is because there are at least 3 possible mechanisms for the inflammation in GCA and Actemra only works for ONE. If the other two are involved - you still need some pred at a low dose.

[DorsetLady PMRGCAuk volunteer]

Hi and welcome ,

As PMRpro says, not sure what you mean in your comment re MD…

Please don’t assume that because you have been given a 26 week tapering regime that’s all it will take.. as many have discovered GCA can’t read the rule book.

Would be useful if you could give us starting dose - and a bit more about you.. and having been in similar situation, I also doubt you will recover any sight loss.

These links may be helpful to you -

healthunlocked.com/pmrgcauk...

More info on monocular sight-

healthunlocked.com/pmrgcauk....

General info -

healthunlocked.com/pmrgcauk...

[ggmother in reply to DorsetLady]

Thank you, DorsetLady for the information. I started out on 40 mg. Prednisone. At 6 weeks I am down to 25 mg. This will be lowered at 5 mg per week till finished at 26 weeks. The actemra infusion started at 30 mg of prednisone. I will read the links you suggested.

[Angelsmummy]

Morning gg mother,I too have GCA with sight loss in left eye because of misdiagnosis .I have MD in both eyes.As said on here,2 different things and my GCA has not altered the MD in any way.My eyesight like DL will not come back,but am monitored very regularly for my MD at my hospital.As said on here by DL,Pred reduction is not textbook in spite of what some rheumys think.I am into just over 2 years of Pred,tapering down from 5 mg to 4 1/2 mg over 7 weeks.I have had 2 flares,one at 20 mg another at 7 mg through being rushed into quick tapers.Please be very careful eh?Best wishes to you.xx💐😜

[Pixix in reply to Angelsmummy]

forgot to ask when we chatted if your Md is wet, or dry,,please? I was diagnosed myself a year ago. My Dad went blind with Md, gradually, over many years. The injections were not available then, but would have helped him now.

[Angelsmummy in reply to Pixix]

Morning Pixix,at present mine is dry a bit like my humour.SO very lucky that our eye clinic at our hospital watch me like a hawk!They are so vigilant with me.Everytime I go I have so many different tests and scans and not all connected to my MD.A neighbour of mine used to have the injections every month.Hopefully mine stays dry as long as possible,need my only eye !Ah well Xmas is over,you will be pleased to hear decs are still up!Hospital tomorrow so they can Stayuntil the next weekend!😱Hope you had a good un?Ours was lovely and quiet.Just waiting to see my great grandson shortly and THAT will be my Xmas!xxxlove H.xxx🍾😜

[Pixix in reply to Angelsmummy]

Mine is dry, too…no treatment available, but recent announcements show there may be one on its way…but guess it won’t be available before we push up daisies! Friend has wet MD and has frequent eye injections which are helping to slow down the progression of the disease. I thought it better to have wet MD as there is treatment available?! Good to hear your decs still up, there are 12 days of Christmas!! Good luck at hospital, my first appointment is 7 January. Hope your visit with great grandson is magic! S xx

[Angelsmummy]

Hi S,NO way would I prefer the wet,treatment or not.,All the time it is dry no problem.My sight in my one eye is not brilliant,everything looks mottled,the reason I will not drive.,but better that than being blind.,Didn’t see my little man,went out with his daddy but he is up for another week so plenty of time to enjoy him.Felt rubbish all day anyway so probably a blessing he didn’t come today.Very early appointment for me tomorrow 8.30 ,3/4 of an hour drive to get there.Lucky I get up early ain’t it?Good luck for your appt on the 7th.xxx😜😱💐Hx