I am new to GCA and was most interested in the notes on antibiotics.I am 83, have been in excellent health until now, except that I found over the years I was allergic to 9 different antibiotics mainly given me for cystitis or dental treatment over the years.
I had a TIA in Sept 2018 and was found to have GCA. I started on Prednosolne 40mg coming down to 12.1/2mg then up to 20mg, now 19mg.Over time I have come on and off Hyroxychlorine,Azathioprine and statins leaving just Pred and disprin. I take the steroids in the morning and by lunchtime until 4.0p.m my brain is a mess.I lack balance, spacial perception - it is like walking off the curb not knowing where you feet are going. I forget things, lose things (house keys, phone, wedding ring) I am full of panic and fear. I seem to have every side effect in the book, my hearing gets worse and my eyes feel swollen. When the steroids, presumably wear off, my brain goes back to normal.
My consultant suggested that I try your website and I am so glad I did as I felt that I was alone in coping with the brain fog, red chipmunk effect, the panics and palpitations, but there are people far worse than me. I hadn't understood that this can go on for years and may well have been sitting waiting for years for the trigger to finally push the immune system over the edge.
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ragdollcat4
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Hello. Well done that consultant. Yes, the Pred can make things a bit weird, all of the above. I found my inability to function, even walk, was so poor that I had to start taking it in the evening so I could sleep through the worst. It transformed my life, what little was normal. That was 2 years ago starting on 60mg, then quickly to 40mg when I was 54. I can happily report that as the dose drops it gets better. By the time I got to 5mg the Endocrinologist said that I should revert to mornings for better adrenal rehabilitation and by then all I got was an 11am feeling vaguely tired and sweaty. By 3mg, nothing.
Welcome to the forum. You are not alone! Lots of peeps here can help with your issues.
I’m PMR only, so never been on the crazy high doses needed for GCA, but at 20mg and down I did get irritated by my memory. It’s actually called ‘steroid dementia’. The pred actually blocks receptors which are important in making memories, so it’s a ‘thing’ not your imagination. Somehow this helped me when I was feeling infuriated. en.m.wikipedia.org/wiki/Ste...
I’m wondering if your daytimes might be a little better if your consultant would allow you to take the pred at bedtime? Get the worst over while you sleep/rest in bed (at least less active than daytime.) There’s always some insomnia with pred, but maybe some amitryptylline might help. Your consultant sounds enlightened, simply by pointing you in this direction to us ‘moany’ old women! (A description from another UNENLIGHTENED consultant!!!) so discuss this with him. Those of us with PMR do tend to muck about with our dose/times of pred a bit, but with GCA you’re risking more so you need their advice.
Not heard of an antibiotic connection, but if you had infection which was long term due to resistance or allergy to antibiotics, that may have tipped the balance of your immune system??? Allergies may feed into the ‘leaky gut’ theories.....I suppose actually antibiotics could too, especially if you had multiple courses due to changes because of allergy.
I hope it helps coming on here and knowing you’re not on your own. You’ll get lots of helpful advice and sharing of experiences. Good advice from your rheumie.
Hi doll! Take hold of the hands extended to you on this forum, and let us walk with you as you find your balance again.
One of the most scarey parts of PMR/GMC and prednisone, is the craziness we feel while we are getting accustomed to the effects of our "miracle" drug (prednisone).
This weirdness will get better, and you will be fine.
There are people here who have walked every step of the PMR/GCA journey before you, and they are willing to be your support people 24-7. With the international membership here, some one is always awake and willing to walk with you, or hold your hand through the dark hours of night, and through the fearful times of "not understanding ".
Our depth of education and experience with this disease continues to grow, and you are fortunate to have landed in the capable hands of our experts.
I send you my humble support, and hold you in my thoughts as you work your way to a more comfortable place.
Hi Ragdollcat4 and welcome. Dorsetlady, our wise one on GCA, will be along soon I'm sure. I have PMR and started on 15mgs eighteen months ago and am now on 7mg. Whilst we and our conditions are different your initial taper from 40 mgs to 12.5mgs seems very quick indeed to me so I am not surprised you went back up to 20mgs. At even 15mgs the side effects of pred can be disarming. They did however seem to diminish with each taper particularly noticeable between 7.5mgs and 7mgs when the pred face disappeared. That 0.5mgs made a hellava difference for me.
I remember posting about losing half of the day during the early stages and, following, suggestions on here changed to taking meds at night time. This really helped at the time, however my Rheumy went nuts when I told him since he was of a view that it may interfere with adrenal function further down the line. However night time dosing helped me through a difficult phase. Maybe check with GP first if night time dosing would be ok on higher levels?
In respect of antibiotics being a cause / precursor, I think rather than the antibiotics (allergies or not), the multiple infections may well have contributed. My Rheumy was convinced that the three different infections I had in one week prior to diagnosis was the trigger for PMR. It makes sense since infection causes inflammation which is at the root of these diseases.
Your journey is likely to include ups and downs and this forum is here for both and also the in between times.
Wonder why he was so anti night-time dosing in the context of adrenal function at the higher doses for GCA? At any dose above 10mg there will be adrenal suppression sooner or later (the higher the dose the sooner it will happen) and it isn't until below 10mg that adrenal function will ever become a factor. No reason not to go back to early morning dosing then - but if adrenal function is to return, it will do so as the dose gets down to 5mg and below.
It wasn't at higher doses for GCA it was at 12.5mgs, having reduced from starting dose of 15mgs for PMR. But even for the few weeks I did do night time dose it helped until I got accustomed to pred effects.
Sorry - brain fade!!!! But the same applies anyway - few people will get to below 10mg in a few months and that is long enough to bring on adrenal suppression.
I am allergic to a few antibiotics but dont consider that to be the precursor to pmr as havnt taken any for at least 10 years. I only have pmr and take my pred in the mornings. I do get tired early afternoon but I try and have a nap then so it doesnt bother me. Forgetting things and generally doing daft things come with the pred but as you will see on the site it does become less and less as your pred goes down. Good luckx
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