Thought I'd update good people. Currently, I'm on my third taper. Gca diagnosed Feb. 2018: I'm on 16 mg prednisone and tapering by a half mg Every week. when I got to 17, the head aches started creeping in. Tylenol got rid of them nicely but, with each decrease in prednisone, I experience an increase in the number and intensity of headaches throughout the day/night. Yes, Tylenol or ibuprofen make them settle down.
So, is this flare or withdrawal? That's always the million dollar question. I'd love to get prednisone down to lie levels. Love to get rid of moon face,, thirty pounds, and In general, have my life back. You know the drill.
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Blurry62
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Feb 2018 as a diagnosis date is not very long ago in the world of GCA/PMR. Your body seems to be signalling that there is still inflammation present when you drop below your optimum dose of 16 mgs. Everyone here can empathise with the fierce desire to be off Prednisalone and free from the side effects. The disease can’t be rushed though and a fast taper can see you right back at the beginning and again risk your eyesight. People have had success with low carb diets. If at first you don’t succeed, try, try again. 🕷🕸
Sorry to hear you are struggling with ongoing headaches. But I believe you're not meant to take ibuprofen with pred, but rather paracetamol. If the headaches keep coming back after the painkiller wears off, then they are probably GCA related and you need to discuss with your GP/rheumy to up your pred dose or your tapering schedule. I think you get to recognise the type of headache to worry about. For me they are intermittent stabbing pains that make me flinch, rather than a dull tension type feeling. I hope things get better for you soon.
I agree with SJ - given most people aren't out of the woods for around 5 or 6 years - you are still 'early' in the piece and expecting to taper at such a fast rate will likely only lead to problems. Thing is you just can't taper down any faster than the inflammation in your body dictates without getting symptoms back. For example I had my diagnosis two years earlier than you and am still on 14 mg. There is no way to hurry the life of this disease even if you don't like the 'side effects'. The other thing is if you yo-yo with your dose it wont help in the long run. Find the level you need to control your symptoms and take it slowly from there - there is lots of information on this forum about effective tapering. So hope it all goes well,
As Jane says you are still only part way through your GCA journey.
Having looked at previous posts I think you are still trying to rush through this illness - and although we all understand that - it cannot be done! No way - GCA (and PMR for that matter) has its own timescale - nothing you can do to hurry it up. You can however make life easier by accepting the fact it’s a long term illness and learn to manage IT, not let it manage your life.
Sorry if that sound unsympathetic, I’m not, I’ve been there.
If you are getting regular headaches on a daily basis your dose of Pred is too low, and if you don’t do something about it, it will only get worse. Do you remember the dose you were headache free? Go back up to that, maybe need a little more - a day or day will tell you if enough Pred.
I appreciate you are reducing very slowly, but if you are below YOUR dose, no matter how small a step you take - it’s still too low!
Withdrawal v Flare -
withdrawal symptoms come on virtually straight away on lower dose and usually disappear after 3 or 4 days when body gets used to new dose - flare usually takes about a week (sometimes longer) after reducing to surface, and symptoms don’t disappear on their own.
I hope everyone who has commented here reads this.
I'm fighting the "vascular specialist."
This is discouraging. I had such high hopes with this man. He isn't Support ing longer term prednisone. But I will call and fight it out again.I went back to 17mg. Just now. Below that and headaches increase steadily.
It isn't always so but I think DL is right in there being too many cooks messing things up in the kitchen! US doctors also tend to be very "I'm right...", possibly because they work on their own in offices and have to be self-confident which easily tips over into arrogance. They are also terrified of pred - and litigation in case something goes wrong. But still dish out other stuff willy-nilly!
Totally agree. Litigation is a huge issue here. But biologics ate terrifying as well, and they push those.
It's a messy situation. I asked my internal medicine doc if he'd be comfortable taking over my career and allowing be to taper per my symptoms. He said,"no. I see one case off GCA every five years."
How long? I don't know - most people keep trying a small reduction - eventually it works and you get down a step. Or more. But there are no rules with PMR - it makes them up as it goes along!
Hmmm - now THERE is an interesting problem.Medrol does does something similar - I hated it and it didn't work for me but most people do fine.
The pred tapering schedules are for reducing in general, not specifically GCA. They don't really apply until you get down to maybe 30mg - before that most people can manage to reduce 5mg at a time although some are more sensitive and 2.5mg or using one of the slow tapers is better.
This medical article has a suggested taper for GCA:
and which can be used at any stage if you find an overnight drop is too much for you. It can be adjusted a lot to make it a bit faster but less of a shock to the system than overnight,
DorsetLady also has a slowed taper but I don't have a link to hand.
I am surprised at this response. My regular physician's response when I asked if I should go to a rheumatologist was that it was up to me, but he thought he could "handle" it. He said that he has had several PMR patients, although he is a relatively young man. I am staying with him as he has been my regular GP for more than 15 years. I feel that he knows my body more than any "new" doctor would.
As if we don't have enough to contend with, without having to do battle with the experts who are supposed to be helping us. Good luck!
Hi blurry62, I just wrote a long reply and it errored the message away. So a shorter message this time so sorry if it sounds brusque?!
You are coming down too fast. There is not enough time between drops to assess if you have withdrawal or flare. You need to go up to the dose when you had no headaches. In the long run, slower now equals less pred. Better 20mg now if needed that going up to 40 again.
Moonface will go eventually. Weight can be lost by using low good carbs and high good fats. No cakes, biscuits, pastries. No simple carbs like pasta , rice or potatoes. Lots of above ground veg and soft fruits have lower glycemic index which means they release energy slowly and don't contribute to pred spikes. Have full fat greek yoghurt, olive oil on salads and for cooking meats and fish. It keeps you full longer. Good fat is our friend.
Low carbs worked/works for me even at 15mg. Other than that though - the others have said it all.
Slow down - you go too fast! You think it is slow - it isn't slow enough. And it is bumbling along on the low road - you almost certainly need more pred. If you aren't on enough pred - you will have symptoms.
Once you get down under 20 then it's usually recommended no faster than 1mg per month. That is only if you have no symptoms. You shouldn't reduce unless you have none of the symptoms of GCA. In fact I would be going back to the level when your symptoms were best controlled. I have always had to use a dead slow nearly stop type taper (see pinned posts for tapering ), and usually only 0.5mg otherwise 2 weeks in I would flare. That why you need to go slow then you know what dose actually worked.
The others have said it all. However, if you keep on yo-yoing you will find, in the long run, you will have taken much more pred than if you followed one of the plans available on this site. Do not mess around with those headaches, that is one of the first warnings that the current dose you are on is too low.................ignoring those warnings can lead to eyesight loss.
To help with weight : Newsletter Summer 2016 www:pmr-gca-northeast.org.uk/gr...
Then go to Page 4...............you will be happy to lose weight by just following those simple tips from a lead dietician who came to speak to a PMR GCA Support Group as some people had Type 2, others borderline and some Type 1.
Result we all lost weight and those borderlines never became Type 2 and half of those Type 2 became clear and the Type 1' and others all lost weight. A simple thing like a small dinner plate to trick you eyes, as your stomach is telling you are full, but because stuff is still on the plate, we ignore it.
Have you considered asking to have the headaches treated separately .Maybe tension headaches due to stress of everything else .Hypertension headaches are very intense .I have propanalol for these I am not suggesting this is the answer but maybe the headaches are a separate entity .Even if caused by the PMR
I share your confusion about what to do once we reach the "sweet spot" at which the pains go after a suspected flare. What increments should we try to get to that sweet spot? How long should we stay there, and how best to get back down and to what level - the pred dose at which we flared or the dose above where we felt well, and how long to stay there before we start a slow taper? I suspect the answers may depend on what level of pred we are currently on, and obviously there is no answer that fits all.
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