Hello. I had my first GCA/PMR symptoms in early April this year and was finally diagnosed on 31st July. Since then I've been lurking shamelessly on this site, gaining help and insight from you lovely people, but not contributing myself. I apologise for this anti-social behaviour. I'm female, aged 66 and, until this year, (apart from nearly dying of whooping cough when I was 2, which of course I can't remember) had never known a day's truly serious illness. I wish now that I'd realised how fortunate I was to have good health, rather than taking it for granted.
I'm now seeking your advice about my Prednisolone dosage. On 31st July my excellent rheumy (at the Royal Free Hospital) started me off on 60 mg for 14 days. This almost immediately alleviated the worst symptom, the terrible stiffness and lack of mobility, especially in my legs. By the following day, I was moving completely freely.
On Tuesday last week (26th September) I reduced from 25mg to 20mg of Pred. Almost immediately, some of the pain and stiffness returned, mainly in my right leg, although more in the muscle at the back of the calf, rather than in the joint itself. I'm so fed up at having again to take the stairs one step at a time like a toddler, although it's nowhere near as bad as before.
I've considered reporting this to my rheumy and asking if I can go back to 25mg, but I have to balance this against my worry about Pred side effects, both physical and psychological, becoming more entrenched. I'd be grateful for your opinion about what should be my priority in this situation. Maybe later I'll write about my side effects, as it would be interesting to find out how they compare to those of other people.
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Marijo1951
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Just for the record I'm 54 with GCA only since March that blew up over night. I started with a dose of 60mg, 40mg for 6 weeks and am now on 16.5mg.
Did you have actual GCA symptoms? You don't describe any but 60mg is a GCA dose rather than PMR which is more in the 20's. If I have understood rightly, you've gone from 60mg to 20 mg in less than two months. Unless there are some sound clinical reasons for doing so that sounds precariously fast. For most people that is nowhere near enough time to get the inflammation under control which is necessary to avoid lasting damage. It is then that the body has to go into remission which it will do in its own sweet time, and the average is years not days.
I understand the fear of side effects and at higher doses they are not nice, I know. However, they don't become "entrenched" but decrease with dose over time and the risks of long term side effects can be massively reduced by good diet and health practices. The long and the short of it is that you have to take whatever dose is necessary to control the inflammation. No guideline or personal preference decides how your body is going to react. Pred is a necessary evil and for some reason many docs are so fearful of it, they would rather risk people's sight, cardiovascular health and quality of life. The way I look at it is that the biggest risks are thin bones and diabetes with cataracts and adrenal insufficiency as possibles if this goes on for too many years. The first two biggies can be mitigated against, quite effectively by all accounts. Unfettered inflammation could cause aneurysms, blindness, stroke, muscle damage and more. There is nothing as good as Pred to drop these. It's a bum deal.
The biggest lesson for previously get up and go people (me included) is to find that second gear that rusted up long ago. Then it requires getting over the shock and disappointment of having this blasted condition in the first place. It didn't invade by night from outside and needs to be vanquished by tough action; it came as a result of your body deciding to attack itself, so you have to look after your distressed self. When you accept these things it becomes a lot easier.
There are masses written on here about side effects but if you want to compare notes do post again, I'm sure your list will be as long as your arm.
Other knowledgeable and wiser sages will reply soon I'm sure.
Thank you so much for this reassuring and insightful reply. Yes, I definitely have GCA as well, although from what I've read, possibly a milder form than many others. The inflammation is behind my right ear, which I assume is far enough away from my eyes to mean I was never in danger of losing my sight (but maybe that's a naive assumption). The PMR symptoms have definitely been more distressing.
My Pred regime since 31st July has been 60mgs for 2 weeks, 40mg for 2 weeks, 25mg for 2 weeks, 20 mg for 4 weeks (my current dose), then 15mg for 4 weeks, then 10mg for 4 weeks, which takes me to 18th December. I have an appointment with the rheumy on 11th December.
None of any of this is an exact science made worse by very little research and it seems, widespread knowledge amongst so called experts. The true experts there are, seem to back up a slower more individualised approach.
It would be lovely if GCA were that simple. You'll hear from others soon, but precise location of GCA pain can bear no clue as to risk of eyesight. There is even a rare form where the sight goes with no symptoms at all. My eyes started to go after only 24h of a burning sensation in front of my ear/temple and scalp nearer the top of my head on the right and a tiny bit on my left. With hindsight inflammation was cooking away for a long time before that happened and I didn't know.
Reduction guidelines are as they say, guidelines. The fact that you have symptoms says that this has gone a bit too fast for you. Sometimes it can take more than two weeks for the inflammation to build up to symptomatic levels so if you go too fast you don't always know where your last therapeutic level was. In the early days you are presented with a plan to follow and you think, "I'll just follow that, sorted!". For some it may be fine, but judging from the stories on this forum and my own experience, it isn't always as simple as that. Hopefully you will have a relationship with your Rheumy and GP that is a partnership where you work together. It is a big ask in the early months to feel confident enough to debate with the Rheumy and/or follow your own personal plan, which relies much on reading one's body and gut feeling most of the time. This approach feels unscientific and imprecise, a far cry from the easy plan in black and white. However, after a few scares with flares and growing experience it makes one more resolute. There are times when getting off Pred fast is needed for other medical reasons coming into play making it too potentially injurious to continue.
Last week I saw a Rheumy who had gone full throttle trying to scare me into reducing faster, because he thought I should be on 7mg and not 16.5mg. I asked him why it was better to risk a flare and go back up to higher doses of Pred again (extra Pred in the long run) than slower but steadier without flares. He didn't really reply and went off on a tangent. After all that upsetting scaremongering he said at the end, "You sound sensible, keep going, see you in 3 months which it don't be because our waiting list is 11 months, give us a call if you get into trouble".
Would agree with SnazzyD very quick reduction. I would say that although you were okay at 25mg it was probably only just enough, and the drop to 20mg and the immediate reaction confirms that.
You really need to go back to 25mg and get a grip of things before they get any worse. Speak to Rheumy’s office. You also need to stay at each dose for a month really, two weeks is not always long enough to confirm that level of medication is keeping things controlled.
You may have managed okay so far, but as you get lower the percentage increase gets bigger, so it becomes more difficult. Remember the advice (in the BSR guidelines if the Rheumy queries it) - no taper should be more than 10% of the current dose. 25mg to 20mg is 20%!
I can fully understand you don’t want to be on high doses of Pred, but if you decrease too quickly and end up having to go up again, you very often end up taking more anyway.
You cannot assume that your eye sight wasn’t at risk, the artery or branch of artery that causes the problem is deep behind the eye, not the temporal one. Many people think because it’s sometimes called Temporal Arteritis it’s that artery that causes blindness, it’s not, but it’s the easiest one to carry out a biopsy on. However they are all interconnected.
Oh yes! Hadn't realised that. Obvious really. Mother Nature wouldn't stick the eye's supply on the vulnerable side of the head; she buries the motorways deep. Was distracted by the title.
So that doesn't explain why I was occasionally waking up in the night with temporary blankness in the eye whose side I was lying on. Need to think about that one.
Yes as you know it branches off the inner carotid artery along with others and goes straight into the back of the eye feeding the optic nerve. And the starving of blood to the optic nerve is what knackers (technical term there) your eyesight.
The front of your eye, retina etc is still working taking the light in, but there’s nothing to send the signals to your brain from that eye.
My Ophthamologist explained it’s like a camera, the lens/ aperture are still working letting the light in, but there’s no film to produce the picture. That’s why if I close my good eye, through the lost one I can see a grey haze mainly but with some lightness around the outer edge and my hand if I hold it close to my cheek.
That made it very difficult at the beginning because my brain was trying to process something that wasn’t there! But on the other hand, according to the experts it means that both eyes are still working from the front, so looking at me nobody realises I can’t see out of one - whereas if I wasn’t getting that light in, the eye could become lazy and then you realise things weren’t working in tandem.
The temporal artery does not feed the eye, but as I said it’s the easiest one to monitor for changes and take a section from. Mine was never affected - had it been maybe the GCA would have been diagnosed earlier - but that’s ifs and buts!
Is it improving? I would be suspicious that reducing by 20% of the current dose in one go had led to steroid withdrawal rheumatism - which usually manifests as similar symptoms to what you are taking the pred for. You have also reduced from 60mg to 20mg very quickly - most experts would have taken 4 months to do that.
The risk of GCA is not to the eyes themselves 99% of the time (it can affect the retina but that is very rare) but the blood supply to the optic nerve - a long way from the eye itself.
Everything else I would have said has already come from Snazzy and DL - so I won't waste anyone's time with saying the same again...
Thank you for all the help. I certainly won't be complacent about my sight after what you tell me.
Since I wrote early this morning, I've taken the opportunity while feeling not too bad, to take an exciting trip to Lidl. I wasn't silly enough to buy anything very heavy, but enough to have crippled me when I was really bad. In fact, today my leg feels quite a lot better than yesterday, but I do know that later, things are likely to reverse and I'll end up lying on the sofa staring at Netflix. I'll give it a day or two and maybe call the hospital. I've spoken to the assistant before and he's very nice and approachable.
Regarding side effects of Pred, in fact I'm not sure if the most alarming thing was actually a side effect or in fact a symptom of GCI. I had my second hospital appointment 2 weeks after the first and she asked me to come to the hospital on the previous Friday for a blood test so she would have up to date readings. I duly went and just as I went into the cubicle, I collapsed against the wall feeling as if somebody had hit me on the right side of my forehead with a sledge hammer. I'd never before experienced a headache like it. The phlebotomist obviously thought I was terrified of needles but, when she realised I was actually ill, she was very kind and took good care of me. Afterwards I found the nearest Ladies' and spent an hour alternatively throwing up and having diarrhoea. Some kind people then took me to reception and I was dealt with by a nurse who clearly thought I was either having a stroke or was a dementia patient who'd managed to stray. I ended up spending the weekend in hospital, having am MRI scan and a lumbar puncture to rule out meningitis.
Then the following Tuesday I was at home with my friend Clare and it happened again, not quite so bad but scary enough, especially when the paramedics came and I saw how high my blood pressure had gone. I didn't have the same gastric response. My daughter and I were at A&E until 4.30 the following morning, 12 hours after the attack. I came home. There wouldn't have been any point in being admitted.
I now realise that the first attack was brought on because I got very annoyed by a selfish patient in the blood test queue who messed everything up when she went out to the corridor to take a phone call and spent ages out there. The second one was because Clare and I were discussing a very upsetting piece of local news involving a small child. Every time I've had a slight dawning of the headache, I've been feeling emotional about something - one time I was laughing too much at 'Just a Minute' on Radio 4. I seem to be able to control it now and to stop it from developing .
I asked the first doctor who examined me if it could possibly be a reaction to the steroids. He said definitely not, there are lots of side effects but this is not one of them. However the doctor I saw early morning after the second attack volunteered that in her opinion it was the steroids. Maybe the first doctor didn't want to scare me into giving up the steroids, in which case I'm grateful to the second doctor for treating me with some respect. However I really don't know which one was correct. Has anybody else had a similar experience?
Just one observation - They used to say that it was a sign of getting old when policemen appeared too young. In my experience, it's the doctors. I couldn't believe some of the 'kids' in the hospital who spoke with such authority. My lumbar puncture took place at about 2 am. I was half asleep and saw a young man and woman approaching my bed. At first I thought they were my 17-year old twin grandchildren and thought how nice to let the twins visit me in the middle of the night!
I don't think spiking BP is a common reaction to pred - although pred will tend to raise your blood pressure in general. You say it has happened when you have become upset - and that suggests to me it may be adrenal-related. Being on pred does affect adrenal function - and being upset challenges adrenal function, requiring more cortisol to help the body respond.
Did you have any sense of palpitations when it happened? When I had attacks of atrial fibrillation I felt rather like that - and my a/f was caused by the autoimmune part of PMR. I'd have expected them to find that when you had the attack in hospital though - they did do an ECG at the time I hope, not just check your BP? I was in hospital for a few weeks when mine was identified and although I was linked up to an ECG machine for long periods the pulse rate it was registering and which the nurses were recording on 2 hours obs was not always the same as we could feel (checked by the paramedic daughter). We told them on the ward but they were rather dismissive.
I don't remember being aware of palpitations at the time. Yes, they did an ECG. I was told that I had a heart murmur but it was nothing to worry about. Your mention of the adrenals is interesting. I'll have a good read about adrenal function. How I wish I was knowledgeable about physiology.
Dropping by 5mg suddenly is inefficient. The best way to reduce steroids is to do it very slowly. Am talking from experience. You could try going down to 21mg and stay there for at least a week if not two and so on. Otherwise you may find yourself going up and down all the time. Get a supply of 1mg tablets in order to do this. Good luck
What level did you start at and how long did it take to get to 20mg?
I started at 40 two weeks ago and dropped to 35 last Saturday. Have done gentle exercise and stretches every day with no ill effects other than modest shoulder pain on waking.
Inclined to suggest to GP that I reduce to 30 this weekend but then work towards 20 over next 4 weeks.
I feel bad today with increased pain and stiffness, so I called the Royal Free and had to leave a message. A nurse will call me back 'within 48 hours'. I'm going to follow my instincts and go back to 25mg per day for the time being. I'll try to see my GP tomorrow to get advice.
Hi Marigo,you certainly have been having a very rough time,there is nothing l can add to the excellent replies you have had so far,l just hope that you will eventually feel a lot better .All the Best,Patricia.
Thank you very much for the kind thought. One good side effect of being ill is discovering how many nice people there are out there, including a lot of them on this forum!
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Why are my limbs painful after coming off Pred?
down to 10 mg pred shoulder stiffness and pain return
Any one on Methotrexate?
So it's not PMR ??
Just when you think it can't get any worse...pred taper abandoned, back to start line
