GCA FLAREUP

[Joyful13]

I recently started a flare up with GCA. I have been off the Actemra of which I had monthly IV infusions for 10 months. I stopped the Actemra in October. During those 10 months, I slowly reduced the Prednisone to 4 mg. Several weeks ago, I began having severe frontal and temporal headaches, along with some painful jaw claudication. I have also had an increasing ptosis, drooping of my left eyelid and blurriness in my vision. I just read tonight that "ptosis"can be a manifestation of GCA. Has anyone on this forum experienced the drooping eyelid with GCA. I had not heard of this as a GCA symptom. I am presently taking Prednisone 40 mg and will start the monthly Actemra infusions next week. My ESR lab had really gone up again, and the CRP was slightly elevated. I am also having an epidural next week for sciatica, etc. in my lower back. A rough time these past months. I see my PCP tomorrow to discuss her thoughts about the left "ptosis." Wishing you all better days ahead in this complex illness.

[PMRpro Ambassador]

Oh what a shame the Actemra has only worked for barely a year. I can't remember if I know, were you part of a study? I know they are now in that stage of the Giacta study to see how long the remissions last.

This

emedicine.medscape.com/arti...

suggests ptosis happens in up to 2% of patients - so not very many.

Do hope the spinal approach helps the sciatica because it is a miserable thing - are they sure it's a spinal problem? Mine was purely muscular in origin - the pain clinic had decided they'd do a block if the muscular approach didn't work but it did.

[Joyful13 in reply to PMRpro]

Thanks PMRpro. I will read the article. I will let you know what my PCP thinks about the ptosis. No, I am not part of a clinical trial on the Actemra. The rheumatologist stopped the Actemra early because we were not sure if it was causing some of my GI problems. I have been working the past four months with a functional/integrative doctor who is helping me sort out all the GI issues.

I had a MRI of my lower back which indicated nerve impingement as well as L4/5 vertebral issues. Hopefully, the epidural will help.

My father, stepmother, and my best friend have all passed away since July 2016. I am sure all these losses have not helped. However, I look ahead with hope and courage most days.

I so appreciate you and all the other wonderful people on this forum.

I

[PMRpro Ambassador in reply to Joyful13]

" I am sure all these losses have not helped."

No, I'd agree there!

[casse]

So sorry to hear you have to go back on the Actemra, I am supposed to start soon but not sure now as I may have diverticulitis. How many milligrams were you on when you first started the infusions?. I am in a flair and back up to 45. Flared at 33 just can't seem to get lower than 32, however a year ago January I did get down to 14 but think I dropped to quickly started with 60 in December 2014. Wondering how quickly they reduced the prednisone once you start the infusions, I guess it all goes by your blood work? Good luck and again sorry you have to go through this again but I guess it's the nature of our disease.

[India8887]

I have GCA, on p 40mg, tried to reduce but flared up again, doctor couldn’t advise me on what to do so took it on myself to increase the dose to get some relief... so down & fed up of my Moon face & now like you I am noticing my eyelids dropping... thought it stenge as only 31 years old ... looked up natural ways to prevent it getting worse only to find “causes & treatments” which highlighted that neurological conditions like GCA can cause droopy eyelids!

[Rimmy]

Hello - you are one of the few people with GCA who has mentioned 'ptosis' here - as a symptom/experience - which I have also had with both eyelids -from the beginning - in fact it was something I had for quite a while (an early 'sign') even before my diagnosis. I am currently doing well but in the two significant flares I have had in my 2 years plus with GCA the ptosis has promptly reappeared and seems to go along with the worst bouts of fatigue. You are obviously having a tough time at present so I hope you get some significant relief soon !!

Best wishes

[Joyful13]

I tapered off Prednisone last November, and stopped Actemra about a year ago or more. I have severe ptosis

of right eye especially with increased reading and/ or fatigue. I had not realized that it was a possible symptom of GCA.

I had a second cataract surgery 7 weeks ago, and the ptosis seems worse again. I will check with my rheumatologist about this. My ESR is high normal and CRP is high normal. Doctors have not been concerned about recurring GCA.