I've already posted once when I was first diagnosed with GCA and got loads of good advice, info, reassurance. So grateful. The problem now is that after 12 days on Prednisolone 50mg the headaches started to come back and jaw pain. I wrote in my previous post that an on call doctor came out on the Saturday, found that there were no rheumatologists on call, no advice anywhere and no helpline, so he got me admitted to hospital. Then everything fell to pieces as there were no conultants in the hospital and they had no idea what to do with me. So I returned home Sunday night after an absolutely traumatic time in hospital and tried to calm down.
Today when I woke the headache was a little worse and there appears to be a blurry patch in the bottom right corner of my right eye. So I tried to get help from the surgery, but had huge difficulty getting past reception. It's not that the staff aren't helpful, it's just that they're totally restricted by the ridiculous computer programme that they've got handling appointments, emergencies and other stuff. Anyway, at last they sorted something out and a GP phoned me. Then things improved. She said she'd speak to a rheumy about it and phone back. She didn't get a reply from the Rheumy until very late, but bless her, she did phone back at 8pm!
The advice was that I should stick at 50mg but that I should see an opthalmologist urgently. I have a bloof test at the surgery tomorrow so she's arranged that I can also see the GP that's been looking after me up to now. Then the rheumy wants the blood tests results from tomorrow as quick as possible. So things are happening. But I was hoping to be told to increase to 60mg - I'd have felt safer.
Trouble is, I've worked myself up into such a state I'm actually shaking and can't calm down. Normally I'd just go for a walk, but at the mo I can barely make it between bed, sofa and kettle. So I'm trying to think calm thoughts and look at the lovely trees in the back gardens of the houses opposite. Not sure anyone can say or do anything to help me in this situation, but I just wanted to get it off my chest a bit to people whom I am sure can understand.
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Blondgrassblowing
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hey, I’m no expert on anything but just want to give you a response and let you know you are not alone.
I too have GCA/PMR. Your dose will have been calculated using your height and weight. I was going to say go to your optician but am pleased to see that has been said.
Most experience a ‘high’ if you like when we begin taking the steroids but after a week or two our bodies become used to it and we might not feel as good. Maybe that is what is happening.
Try and keep calm and relax. Stay home till your told otherwise and I’m sure the experts will follow along very soon.
Thanks Conundrum. I have calmed down a bit. Actually I'm so exhausted by everything I think I'll go to bed early and hide under the covers as I used to do as a kiddie (just joking .... about hiding under the covers!)
Yes I would hoped for an increase to 60mg as well…do you have appointment with GP tomorrow - or just blood test with nurse? I’d be inclined to ask the question again…and once blood has been taken if you have enough then take an extra 10mg afterwards.
Have you managed to get an appointment with ophthalmologist/optometrist?
Well, everything has happened rather late today. I'm seeing my GP tomorrow after the blood test, so I can ask her. And I'm not sure if todays GP has already referred me urgently or if the GOP tomorrow will refer me to eye specialist. I'll ask GP again about 60mg and about the referrals as well. What do I do with the extra 10mg of blood that you suggest? Sorry, I'm a bit clueless on all of this! I'm off to bed now with a milky drink. Thanks for your reply, much appreciated.
After the blood test, speak to GP about increasing to 60mg emphasising you are worried about sight loss… you can say -“just until you get a response from Rheumy, and it’s in accordance with advice in guidelines if someone has sight disturbances ” . Hopefully the results will be back by end of the day or following day… then the decision will be taken out of your hands.
I hope you are feeling much calmer by now and are making progress with the docs and meds. Just on the getting calm front, I know that breathing OUT for longer than you breathe in is the fastest way to turn on the relaxation response (parasympathetic nervous system). And you can't be both stressed and relaxed at the same time! So taking time out to sit or lie down (whatever is comfortable), close your eyes and let go on the OUT breath really helps. Short breath in, long breath out. All the best!
Hi All, thanks for your support. I had bloods done this morning and an emergency appointment squeezed in with the GP. I first of all showed her what appears to be a boil on my neck where I squeezed a spot (I know, shouldn't squuze spots), so she's prescribed Flucloxacillin, which is another of these ghastly things where you have to swallow with oodles of water and stay upright for half an hour otherwise you'll burn your throat. So, more stress.
Then I said the headache was increasing, the jaw was hurting again and there was something strange going on with my eyes. I suggested that the one huge danger was to my eyesight, and the way to avoid that was to up the dose while it all gets looked at. Also, seeing as I now had an infection and the guidelines say that with an infection you should up the dose, AND my symptoms were returning, I thought it was in my best interests to up the dose. She started going on about the dangers of high dose steroids and I said I had looked at all this fairly carefully and thought it through and decided as an intelligent adult that the best course of action was to up to 60mg. More fluffing and faffing from GP and she said would I wait in the waiting room while she contacted an Opthalmologist. Of course, shre couldn't contact anyone. So she came out an said she'd put an urgent referral through and I should hear at ome soon. Meanwhile to go to A&E if symptoms got worse. Well, I'm not going to do that, they won't be able to contact anyone, any more than she could, so they'll fuss and faff just as they did all last weekend. All it will do is cause me huge stress. Anyway, just now I got a phone call, please go to the eye clinic at outpatients tomorrow at 3.15.
I cannot see what the drama is all about, it's obvious the meds need putting up. And the trouble is, I have only a sufficient amount of Prednisolone to get me to Monday morning on 50mg, then when I see the GP she will give me the prescription for exactly the amount she has decided to let me have to last until my next appointment. So I can't put it up myself. And, last straw, I mentioned my exceedingly high blood sugars and said I might need help from Metformin to stay at safe levels. But no, she wasn't in agreement. So I said I'd monitor with my own blood sugar monitor, and adjust my meals accordingly and see if I could manage it with diet (as I have for the last ten years). She told me not to test because it would make me anxious and there was no need!!!!!!! I've come away absolutely furious and absolutely despondant both at the same time. I feel as if the GP is blocking me from the only safe course of action.
What a lot of stress for you - and unnecessary in my view… you obviously require a higher dose and as you say GP is faffing around.
Although you have an ophthalmology appointment tomorrow which hopefully will take the necessary action and increase meds, obviously if things deteriorate before then you do need to go to A&E…
I am noticing that all hcp’s are keeping a very tight rein on Prednisolone now, more so than they did. I have been put under huge pressure to reduce. Like you A&E weren’t helpful
I really hope the optician can help and apply pressure if needed or at least put your mind at rest. Mine was brilliant.
As for the high sugar, Pred. does that. I used Dr Mosley’s 800 cal diet (mainly high protein, high fat, very low carb and no sugar) which reduced the awful weight gain and reduced sugar to a safer level. I am now on 2.5 mg and my sugar has returned to normal.
I hope you’re able to relax in your garden. I find if I don’t keep on top of it in July it all runs and becomes out of hand. Have picked raspberries and lovely gooseberries this year.
I'm hoping this is all going to get sorted this afternoon, fingers crossed. I'm going to swap to one of the other docs in my GP practice. One a little more in tune with my thinking on a management plan. I do follow a virtually carb free diet and have managed to hold the pre-diabetes at the same level for nine years. Whereas several friends, all diagnosed at the same time didn't do this and followed the advice given by the NHS (the Eatwell Plate) that encouraged you to eat "Good" carbs (Huh? No such thing) and they're all now diabetic on medication. Thank goodness I found the No-carb method. However, I'm on 50mg Prednisolone and currently despite my best efforts the blood sugar is still soaring sky high. So initially I might need a bit a help - Metformin perhaps. Once I start tapering I can probably get things under control again and come off the Metformin. Good to hear that you are also following this type of diet and it's worked for you.
My garden is "under construction" at present. Have hardcore in for paths and summerhouse base, and mounds of topsoil heaped up for replacing in raised beds once the retaining walls are built. Can't wait. In my garden two houses ago, I had Victorian walled garden with a row of raspberry canes by the sunny wall. Wonderful memories of sun warmed raspberries picked to eat with cornflakes and double cream. Mmmmmmm! I am now in much reduced circumstances, but my plans are still .... big! I've always planned my own gardens and then embarked on construction scenes involving yellow diggers - great fun. Seven so far, but this will be my last I think. Enjoy your garden, lets hope the weather warms up soon.
Just an update to everyone. First of all, the visit to the Opthalmologist was very reassuring. He said I had a very healthy optic nerve and there was no pathology in the eye. HUGE relief. He also said the strange vision effects I'm getting are very probably to do with the eyes not having rebalaned themselves yet after my second cataract op. but if things hadn't improved in three or four months time to get re-referred and they'd have a look and see what they could do.
Today, I decided to monitor my blood glucose every hour, so that I knew what the Pred was actually doing. I followed a normal (for me) low carb day that includes porridge for breakfast to keep the IBS and stomach calm, followed by a half hour very slow walk, a no carb light lunch, and a minimal carb dinner (can't really avoid all carbs as even green beans have a tiny amount). Today also I walked into town to pick up a few things from Sainsburys (rather overdid it, out an hour and was totally exhausted. So I thought I was pottering and my body thought I was really working hard. Even without the Pred I think my liver might have dumped some glucose in this situation. Will have to lower my exrcise level ideas!
These were the results: 7am 5.3; 8am 5.6; 8.15 Breakfast, 50mg GR Prednisolone and other pills; 9am 7.7, 30min walk ; 10am 5.6; 11am 5.5; 12noon 5.3, light "no carb" lunch; 1pm 6.3, 2pm 7.0; 3pm 8.1; 4pm 7.5 walk to Sainsburys; 5pm 8.2; 6pm 8.3, 7pm 8.4, very low carb dinner; 8pm 9.2, fell asleep in chair; 10pm 8.8
Normally I'd be under 6 all day, usually in the low to mid fives, apart from spikes after meals but again within two hours it would be under 6. So it looks as though the Pred Effect kicks in about five hours after I've taken the daily dose and is at max raising me around 4 points above what I would expect. So now I've got something concrete to discuss with the Doc tomorrow. Shan't bother doing such an extensive monitor again in a hurry, I've run out of fingers to prick!
Explained that now I kew my sight was OK, my most pressing worry was the blood Glucose. Explained that modern reasearch has conclusively shown that if blood sugar stays over 6 as shown on BG meter fingerprick test for more than two hours, organ damage starts. Different organs are affected at different levels and I gave her a list of what is affected at what levels. My levels are high enough for long enough to start killing my Beta cells. Said I knew Prednisolone sent BG high by prompting the liver to dump glucose into the bloodstream, and I knew Metformin worked by preventing the liver dumping glucose, so maybe a low dose of Metformin, might control the spikes. Then I could taper slowly and eventually stop the Metformin.
Also I have a horrible boil on my neck, for which I'm takingthe antibiotic Co-Amoxyclav 500mg three times a day and I said I don't want to taper until the boil is sorted.
But no, she wants me to taper now from 50mg to 40mg (i.e. 20%, not 10%) and then taper down again in two weeks. For some reason she is utterly resistant to Metformin. She has only prescribed enough prednisolone to last until my next appointment at 40mg day.
I've gone from very positive over the weekend to totally despondant. I was going to swap to another GP in the practice. I think I need to see another GP PDQ. I can't stand much more of this creating mountains from molehills.
Actually at higher doses for GCA you can usually reduce more quickly [once initial dose has things under good control] - in fact virtually all the guidelines state that.
Plus although we do talk about the ‘not more than 10% reduction’ - that was actually stated by endocrinologist who are the experts in reducing Pred particularly in respect of lower doses - i.e below 10mg] - and their concern is adrenal sufficiency/insufficiency matters.
Not sure it mentioned in PMR/GCA guidelines, nor is it as important with higher doses, although obviously too big a reduction may lead to a flare.
But do agree you may need a more understanding GP.
This makes me feel much better about the reduction, thanks so much. I've decided to go with what the GP has suggested, but at the end of two weeks, I'll fight my case a bit more strongly! Without the support of this site, it think I'd be climbing the walls by now (mind, I am halfway up the curtains!)
The reason you start at 50mg is to maximise protection of your sight - then you get to the regular starting dose of for simple GCA of 40mg quickly - 10mg steps are commonly used down to 20mg. Don't worry. If it doesn't work you can go back and go slower with 5mg steps but it is important to get the high doses lowered as you know.
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Update: Cancelled NHS Appointment
Video call with consultant this morning
My rheumy wants me off of prednisone as soon as possible
Symptoms recurring on 3.5 pred.
