Newbie here and problems. GCA.

[ngchgc]

Came down with jaw pain and and calf claudication early August took a while to get an appontment with the Rhumy, luckly my Dr put me on some steriods early 25mg a day, week on and a week off untill I saw the Rhumy, Had the biopsy done and came back positive for GCA, everthing aches and pains and trouble walking, walked like a duck! Once diagonised and 60mg to take, it took 2 months to feel better.

One problem leads to another now.

Now I was on 60 mg since October, early December the Dr told me to decrease it 12.5 each fortnight "kaput". had to increase, then to go down 5mg a fortnight, still problems.

Saw the Rhumy yesterday, now back on Actemra, as liver tests showed an increase since starting, and now told to lower more on steriods, have to get to 10mg asap he said, as legs and feet swollen to hell, and feel like watermelons, and whole body feeling terrible. ATM on 30mg morning, and 10mg at night.

Question to others,

Now if one has a good day, and does some work around the house how long does it take to go worse? For me it can be 30 minutes to one hour, then I need the rest of the day to settle down, mentally and physcially! Heat makes it worse. Shaking from knees, body, to hands, sometimes cannot hold a glass to drink. One thing to notice is my eyes, when I wake up and they are not watery I have an average day, if wet and watery, a bad day ensures, never had it before? Might have 2 days a week on average, the rest "kaput". Oh yes, extreme tiredness and hair loss now. The hair loss does not worry me.

Rhumy wants me to see a neuropathologist.

Booked in tomorrow to see the Optometrist, see what he says?

Male, Queensland Australia, yeah, summer time here.

[DorsetLady PMRGCAuk volunteer]

Hi and welcome as first post,

Did reply to other thread, so have replicated here-

If you are having problems lowering the steroids, then it sounds as if you haven’t managed to get your GCA fully under control..early days you can reduce relatively quickly down to 25-30mg, but, and it’s a big but only if the initial dose really got to grips with the inflammation. And Oct to Dec on 60mg should have achieved that… how did you feel before you started 1st taper?

We would usually suggest at least be weeks at each drop, 2 weeks isn’t always long enough to know current dose is sufficient before you reduce.. If it isn’t and you taper 2, 3 or 4 times you can get in a pickle because you have gone below the dose that is sufficient.

May have a look at this general info post-also contains links on pacing yourself which is very useful -

healthunlocked.com/pmrgcauk...

And this re tapering - healthunlocked.com/pmrgcauk...

You do sound in a bit of a state…. And not sure a quick taper to 10mg Pred will do you much good… think Rheumy is blaming that when it could be Actemra as well.

Please let us know things progress.

[ngchgc in reply to DorsetLady]

Yes I did, but put more info here! Thank you.

[DorsetLady PMRGCAuk volunteer in reply to ngchgc]

second reply copied

Rheumy might want you down to 10mg - but as you say, your GCA might not like it.. neither may the ophthalmologist/ optometrist ..

Let’s us know please.

[Angelsmummy]

Good luck to you from a fellow GCA er,really hope you get sorted out soon,and as regarding tapering,as I have found out to my cost,the tapering isnt easy,I am 2 years in and still trying to find my magic number after 3 flares.Hope you get the proper advice,but still check on here if you are not happy.Too many of us on here have been rushed into quick reductions and it is us as the patients that bear the brunt.xx💐😜

[PMRpro Ambassador]

It all sounds a bit of a mess to me. The watery eyes is typical of a condition called "dry eyes" - your eyes aren't producing the right sort of tears so they produce loads of the wrong sort to try to make up. It suggests to me there might be another a/i condition going on - has the rheumy thought you might have something else going on too? Such as Sjoegrens.

Even though 60mg pred should deal with the GCA, sometimes it takes longer than some doctors think - and even though he introduced Actemra which, in theory, means you need less pred, it can take a month or two to work and allow you to reduce the pred. And then you were told to reduce in ENORMOUS steps which most people's bodies would protest about. You say "back on Actemra" - when was it started and stopped and started again? Why was it stopped?

[ngchgc in reply to PMRpro]

Actemra was stopped due to blood tests, Rhumy said to stop and see if Actemra was causing liver function problems, higher markers. need to see my GP and get the results.

Sjoegrens is interesting to read, now that you mentioned it. Now to ask my blood guy early next month and the Rhumy when I see him next.

thank you.

[PMRpro Ambassador in reply to ngchgc]

It might not be - you can have sicca syndrome in many a/i disorders without the antibodies. But there is something very untypical about what you describe - it could be that it is something else OR you have just been struggling with a very strange way of dealing with it.