I was diagnosed with GCA three and a half years ago and given 60 mg of steroids because of problems with my eyes. I had two major flare-ups which were so bad I couldn`t chew anything and the rheumatologist told me to go back up to 60 mg. She gave me a much slower tapering schedule. Once I tapered down to 10 mg I have been reducing by 0.5 mg each month without any problems. On 1st October I came down to 3.5 mg and now feel terrible. I have no symptoms of GCA except a headache, which could be caused by the stress of feeling so ill. I have no withdrawal symptoms either. However, I am suddenly absolutely exhausted all the time. I hardly have enough energy to make myself a cup of tea. I feel sad and miserable - without any reason whatsoever. Nothing has changed, my life is going on just the same as it always has, and yet I feel dreadful. I had Covid last month but only had minor symptoms.
Can anyone offer any advice?
Edith
Written by
Jampad
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Adrenals struggling for one thing -happens to many of us -see attached link -
Plenty of TLC, very slow taper and patience required. Might be worth requesting your cortisol be tested.
Headaches are not usually a major factor, so just monitor those, and just bear in mind your last reduction may have taken you below the level of Pred you actually need. So if they don’t resolve or you get any more GCA type symptoms you may need to increase a little.
Adrenal insufficiency - secondary to long term steroid use. And the Covid won't have helped - your body won't have been able to produce cortisol to help you get over the illness.
You should improve with time as the body's own production of steroids is poked to do some work. But the alternative would be to go back to 4mg if you felt OK there and wait a couple of months and try again. 4mg should be low enough to encourage the adrenal function but it isn't ready for half a mg less.
I sympathise. My adrenal glands definitely did not like being asked to work again. I found you just had to tough it out, I must admit I did increase a little as I was in such a bad state I was totally comatose!
At 3.5mg I felt exactly the same as you. I couldn’t cope so don’t try and stick it out. Go back as PMRpro said to where you felt comfortable. I waited too long before giving in and had to go back to 6mg. Currently on 5mg and I still have days when I feel anxious and tearful for no reason but the deathly fatigue has subsided.
I think the tocilizumab (Actemra) was/is very helpful in tapering prednisone especially at the low dose. I have been off prednisone completely for 6 weeks with no depression/anxiety for past 2 weeks. Some fatigue but not bad. Hope you feel better soon.
Thank you Dad2cue. Interesting info as always from you. Remission of gca & pmr not an issue right now. However, 3 wks ago had guided image cortisone inj in each shoulder (helped a alot) and yesterday c7t1 interlaminar epidural cortisone injection. Maybe I can't really say I'm off cortisone. Xrays/MRI's of back, shoulders, knees are a mess. Always hard to know what is from what.
I enjoy all post/ the sharing of good and bad. Thank you for sharing your experiences-so hoping will have an easy taper, reading about yours makes me hopeful!
Thanks for all the advice which has been incredibly helpful. I realised that in the space of a month I had Covid, and then a booster jab - before I read that I should have waited four weeks after having Covid. I also had a flu jab and then visited the Eye Infirmary to have an injection in my eye, which scared me silly. My husband had two hospital appointments and someone I thought was a friend made some very unkind remarks which really upset me. So, I think so much happening in such a short time was just too much and tipped me over the edge. I stopped the taper to 3.5 mg of steroids and went back up to 4 mg. I`m feeling much better now - partly because of going back up to 4 mg but also because I realise that nothing horrible is going on - I had just overdone everything, and need to try rest and relax.
That's exactly the stage at which I found I had gone too far. I went back to 4mg for a couple of weeks, and then reduced to 3.75mg, rather than 3.5, and it was fine. If you have plain 2.5mg tablets, that is 1 1/2 tablets. Since then, I have reduced by 1/8 mg at a time, and had no more problems (yet!) Never got rid of the fatigue though.
Thanks Sharitone. I was already wondering if I would be okay going down to 3.5 at the beginning of November. I hadn`t thought about going to 3.75 but think that is a brilliant idea.
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