GCA diagnosis in September 2017

[Mercedes220]

I am a 60 year old man,and I was very healthy until this struck me. My starting dose of prednisone was 40mg then raised to 95mg as my inflammation was 256 and I had 4 bouts of sight loss. I am now down to 10mg but I have very severe headaches and have had some sight loss again. My body feels so stiff and my lower legs get very swollen daily. I seem to sleep all day and night, I have broken so many mugs, I just go off to sleep so quickly. I haven’t been able to work for the year, and no signing of improvement yet.

[gifford7]

If I had your symptoms [severe headache, new sight loss] and previous diagnosis of GCA,

I would go to the emergency room [ER] and report this; it sounds like you are having a flare of GCA and the proper treatment is high dose prednisone by infusion [1000mg/da for 3 days] per BSR guidelines, to prevent total loss of vision. Then high dose oral prednisone. Are you seeing a rheumatologist? Have you had a blood test for inflammatory factors CRP ESR?

[Daisychain12 in reply to gifford7]

I am in full agreement. You have been through enough. Pls don’t be “brave”. You need help xxx

[SheffieldJane]

It sounds like your reduction has been too swift and that your dose is currently not high enough, irrespective of any blood test results. Did you reduce very quickly? It would help us to help you if you gave timings of your illness and the speed of your reduction. This will pass but we need to help it along. You really do have my sympathy, all that fright and suffering. Hang on in there.

[Daisychain12 in reply to SheffieldJane]

Jane it’s heartbreaking isn’t it. Xxx

[Marilyn1959]

Hi Mercedes220. Eleven months from 95mgs to 10 mgs? Really???? No wonder you are having significant symptoms returning. From what you say your GCA is not under control since you are suffering significant headaches and some sight loss again. Who is guiding you with this? GP? Rheumy? Given your current state I concur with gifford7 and think you need to seek urgent medical attention to stabilise your GCA.

[Daisychain12 in reply to Marilyn1959]

Marilyn let’s hope Mercedes will get back to us with an update xx

[Daisychain12]

Please Mercedes update us. I am very concerned about you darling xxx

[SheffieldJane]

As you are so incapacitated by the mistreatment or lack of guidance in this. I would be inclined to phone for an ambulance to fast track to specialist, informed care. This is every bit as much of an emergency as a stroke for instance. If you are able, let us know what happens.

[PMRpro Ambassador]

If you are having GCA symptoms again why have they not raised your pred dose again? To reduce from 95mg to 10 in 11 months is fast by anyone's standards and relapses are very common in the first 18 months after a GCA diagnosis.

Where are you?

[arthur463 in reply to PMRpro]

Well done PMRpro - Mercedes must talk more with us - and you especially. Dear Mercedes - Talk to us - we all want to help.

[Marijo1951]

I can only repeat the advice already given - get to the hospital as soon as possible and have them check you out for a GCA flare. You don't want to risk losing your sight. They might put you on methotrexate which is what happened to me the second time I had a severe flare.

[j-e-a-n]

Who on earth put you down to 10 mgs. This is way too soon. Sounds like you are having a flare. Go to A&E immediately before you have permanebt sight loss or any of the other problems associated with GCA. I have had mine for 2 years now and am only just down to five mgs using the slow/stop method. You cannot rush this disease, just go with it and reduce slowly

[Deb61]

Hi Mercedes 220

I am sorry you are having such a difficult time. I too have struggled with GCA and PMR. It is very difficult to balance the disease and the prednisone. The prednisone although very necessary created a lot of other problems for me. On high doses of pred I really struggled my blood sugars went up to 39 and I had to be hospitalized as I became extremely diabetic, I had vision loss from the pred as it caused csr in one eye and I have some permanent loss due to many episodes of the csr. I also had extreme mood swings, huge , huge fatigue and episodes of fainting. My rheumy rushed my taper and it made everything worse and I relapsed two three times that led to more higher doses of pred. Also the tapering regime was horrible.... so much pain, fatigue, relapses etc. Finally I went to see a consultant who was very good and he worked with my family doc who was excellent, slowed down my taper and I adopted the dead slow method. When I taper I get extreme fatigue, muscle pains and nausea and diarrhea even with the dead slow method. It is now three years later and I am at 2mg and I have stayed there for a number of months and may never get down to zero and that is okay. If I ever had to go back on a higher dose I qualify for actemra use so I can stay at a lower dose of pred. Not sure why your taper has been so fast but it is never a good thing in my opinion. Finding a doc who both understands the disease and the importance of a slow taper is number one in my books and sometimes you have to really be your own advocate. If your levels are that high it indicates you need more pred to keep the inflammation at bay. It is not just the disease that is the problem lol but how you do your taper. Having tapered super slow over the last year and a half I feel much better and my docs trust my input and experience . I feel so much better now although learning to pace myself is always a challenge! Don't be afraid to speak up!!!!

[Telian]

You need some serious medical input from your Rheumie or A&E. ATB.