We thought we were doing fine until last night. Spent 5 hours in the hospital with a methylprednisolone and hydromorphone IV injections. Her head pain was immence. WE just completed our first cycle of a 1 mg drop from 18 to 17 over a 26 day period. On this past Sunday we began splitting dosages, 1/3 at night and 2/3 in the morning. We are now questioning that splitting at our higher levels may not be good. Or was the drop of 1 mg over a 26 day period too fast? Our reduction plan was as follows:
Days at a lower amount = 1
Days at a higher amount = 3
Days at a lower amount = 1
Days at a higher amount = 2
Days at a lower amount = 1
Days at a higher amount = 1
Days at a lower amount = 2
Days at a higher amount = 1
Days at a lower amount = 3
Days at a higher amount = 1
Days at a lower amount = 8
Went to 20 mg this mid-morning and we have a call into our Rhummy.
Any & all advise would be appreciated.
Jim-CJ
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Jim-CJ
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I would be surprised if the small change you introduced actually triggered the apparent flare - it must have been lurking and already building up to have been so dramatic if it is the GCA.
I'm sorry - your posts and profile don't really give an indication of how long the GCA has been going on - I assume a year? Neither do you say where she started on the pred dose. All these things are critical - it really isn't just the process of reducing that is important.
A study done by doctors and scientists in London and Southend UK and published a couple of years ago found that there was still evidence of inflammation after 6 months at a high dose of pred, i.e. above 20mg/day, even though there were no signs or symptoms. Your posts suggest that she has had flares before - and each time there was a flare that means that, to some extent, you were back to the starting point of there being active inflammation. As long as the underlying autoimmune process that is causing the development of the inflammation/formation of giant cells is active then an adequate dose of pred is the only thing that will prevent recurrence. Go too low and the result will be symptoms again.
It has been recognised for years that it is very common to have flares in the first 18 months to 2 years of GCA and the most likely reason for a flare is reducing too far or too fast. Both are criteria - you can reduce as slowly as you like, if the dose you reach is not enough to manage the inflammation then you will get symptoms returning. But there are people who have GCA for far more than 2 years, most of the people I know who have had GCA required pred at some level for 4 to 6 years. I know only one or two who have had simple paths and been off pred in 2 years. And both of them had awful first years with flares requiring returns to doses of 40 or 50mg on a few occasions before eventually very slow reduction from that high level coincided with lessening of the disease activity.
I think you have to accept that the autoimmune part of your wife's GCA is still very active and she still needs a higher dose of pred than she is on at present. Everyone is different, some people start on a high dose of pred for a few months and are then able to reduce steadily to zero without any problems. Others struggle with every reduction, having return of pain either because they don't tolerate the change in dose or because the cause of the GCA is still very active. There is no fixed point in GCA - no dose that is "the dose", no time scale where you can say the patient will recover in x months/years. The one commonality is the need for patience, waiting until the disease process burns out. None of us can predict that I'm afraid.
I would say though, that now remaining at 20mg for a few months would be a good idea. Getting into a yoyo situation with the dose tends to make things harder. There is obviously still disease activity and the inflammation must be got under control now. As I understand it, your wife has got stuck at about this level more than once? That is usually a sign you need to rest here for a while.
Thanks so much for your prompt reply. She started 1 yr & 3 months ago with GCA treatments. Went for two weeks at 40, then 2 weeks at 60, 12 weeks at 40, 2 weeks at 30, 2 weeks at 25, 3 weeks at 20, 8 weeks at 15, 12 weeks at 20, 9 weeks at 17.5, 4 weeks at 20 and now we just finished this new cycle through 18 mg and had our first one day drop to 17 on Thursday. The drops through the 17.5 were under Dr advise.
We have found that 20 mg was our steady point, with flare-ups lower than that. We did feel pretty good going through this new cycle. Until the Dr calls we will remain at 20 and only take all 20 in the AM.
Jim, some patients with 'just' PMR do find that splitting their steroid dose am and pm helps with their pain levels and especially with the early morning stiffness so common with PMR. However, having had both GCA and PMR, I'm not so sure that splitting the dose is a good idea with GCA - the levels needed to keep on top of the inflammation are quite critical with GCA, not least because rising inflammation can lead to loss of eyesight if the temporal artery is involved. Plus your wife may be someone for whom the anti-inflammatory effects of the steroid treatment wear off more quickly than for others. If it were me, I would prefer to keep on top of it with the whole daily dose in one go, and a sufficient one at that.
As PMRpro has already said, it is quite common for people to have flares in the first 12-18 months of treatment, and as your wife is still within that timescale it sounds as though she is going to need to remain on the 20mg dose as a maintenance dose for quite a while to come yet. If the flares then continue, perhaps a steroid-sparing drug will need to be added in order to reduce from the higher doses.
I do hope that her head pain has resolved following last night's treatment - the pain is like no other - and that she soon gets back on an even keel again.
Thanks for your reply. I believe that splitting was not a good idea. Our Dr called and he has us back up to 60 mg for a week, then 40 for a week, then 30 for a week, then 20 for about three months. Been an up & down 1 year and three months!
It is what often happens if you try to force the reductions - and I have to say that once I got down to 20mg this time I wouldn't be fixated on getting lower. When you then have a flare you have lost all the perceived advantage of getting to a lower dose.
It will come. Just not yet. Don't see it as a failure - you have fairish confirmation that 20mg is your wife's safe dose so don't be bullied in reducing if it doesn't feel right.
I was diagnosed with GCA four years ago after 18months of not knowing what I had. Am now down to 1.5mg after starting at 80mg, so you can see it is not a quick fix.
I had one instance about a year in, I won't call it a flare because I did not have a return of pain, just raised blood markers - which I now realise was down to stress caused by other news not related to GCA.
Hopefully your doctor's advice re increases will get your wife's inflammation back under control, but she (with your help) have to help keep that inflammation under control as she reduces. That means reducing slowly and in small steps, and making sure each reduction is ok before you relentlessly go on to the next one.
I know it feels sometimes that it's never going to end, but it will, and in time your wife will feel she is in control of her illness, not the other way round! Try not to look at recent events as a backward step - it's just a minor blip!
Incidentally, I never split my dose. I did try it for a week or so, but it didn't work for me.
Jim-CJ - Were you advised by your doctor to split the dose ? I'm wondering if there is some concrete and reliable information anywhere about dose splitting. Below is what I've have been told/read and it differs between high dose and low dose:
pro one morning dose - hits the inflammation better and harder
anti one morning dose - at low doses doesn't allow any time for the adrenals to wake up after the morning dose has worn off
pro dose splitting - during the 4 hours or so later in the 24 hour cycle that the morning dose has lost it's potency it might be possible for the inflammation to take root again so you need the coverage of a second dose
- at lower doses below 10-15 allows for the adrenals to wake up in the period not covered by the morning dose -
I'm wondering if, besides people's experiences or their doctor's orders, if there are any approved guidelines set out anywhere.
There are no studies as far as I know about the best way to dose or reduce the dose. It tends to be each doctor using his/her pet approach. The guidelines just say start at dose x and then reduce to find the lowest dose that manages the symptoms - everyone is different so their "right dose" also varied.
Pred is used in a lot of things on a taper basis - starting at a given dose and reducing over days/weeks: for example, I was given 6 weeks, 2 weeks each of 15, 10 and 5mg/day, stop. Perfectly safe and it works in most flares of arthritis (or other things, such as asthma, pneumonia) to reduce the inflammation and then the patient goes back to their normal dose of DMARD without pred which usually works fine. But that is an approach used with other disorders where either other medications are the mainstay, pred is just removing excess inflammation in the flare, or it is due to an infection which is dealt with by antibiotics.
In PMR and GCA pred IS the management medication - remove the pred at the end of the taper and the symptoms will just return very quickly. That is the basis of one concept of identifying if this really is PMR: give a week of 15mg pred and see what happens. The symptoms improving by 70% within a couple of days and then returning in the same time frame when you stop pred suggests PMR is likely. That was what happened to me: I took 5mg on one day at 8am, the next day I didn't and by 3pm was in as much pain as I'd ever been.
Your post isn't quite correct. A study found that giving 5mg in the evening suppressed adrenal function MORE than giving 15mg at 8am - so for most things where pred is being used short term, telling the patient to take the dose in the morning with breakfast means they should be able to stop pred at the end of the course with no problems with no long term adverse affect on adrenal function. However, that only applies for short periods of using pred, up to about a month. Beyond that any dose over about 7mg/day is likely to lead to adrenal suppression whatever time of day you take it. We take pred at those sort of doses for months, often years, so there will inevitably be adrenal suppression, and when you take your pred needs to be tailored to your needs with regard to the PMR or GCA rather than whether the adrenal glands are being affected - that's happening anyway.
The antiinflammatory effect of pred lasts for 12-36 hours, depending on the person. If you are a 24hr+ person you can take a single dose and it will last fairly well until your next dose. If you are a 12-hour person then you will take a morning dose and by late afternoon the symptoms are starting to break through, long before the next dose would be due. Others will be able to wait until the next day. That is part of the idea of splitting doses - you take some of the dose to tide you over the rest of the 24 hours since the returning stiffness overnight may also make sleep difficult. Then, every morning a new dose of the inflammatory substances is shed in the body at about 4.30am - and by the time you get up you have seized up again. Either you take an evening dose or you wake early, take the dose and wait for a couple of hours until it starts to work.
When you are on long term pred, after about 3 months at above 7mg or so there is very little autonomous adrenal production of cortisol - a very complex feedback system tells your adrenal glands no more is required and they go into hibernation. It is less the glands themselves as the feedback system that has to sort itself out as you reduce the pred dose. It tends to swing about as you reduce the dose below 8mg and it takes time to settle down - like a pendulum. Reduce in small steps and allow time between and it works better because it is more gradual. Endocrinologists suggest switching from pred with its effect that lasts up to 24 hours to hydrocortisone which lasts a far shorter time and that encourages the adrenals to start functioning again. That is mentioned in some guidelines and I have come across a couple of rheumies who do it but it is unusual.
A few people never regain proper adrenal function after being on pred for a long time - one or two experts wonder if that has anything to do with PMR, adrenal function does deteriorate with age anyway, but there is no proof. A sign of that would be becoming excessively fatigued once you reduce the dose below about 5mg - due to the adrenals not starting to produce the required top-up to give you enough corticosteroid for normal bodily function and, more worrying, not being able to respond in stress conditions, trauma, infections or emotional upsets. That can trigger an acute adrenal crisis, long term not quite enough cortisol can lead to chronic adrenal insufficiency and eventually collapse.
And while I'm at it: whatever you may real on the internet there are no supplements that can "encourage" or "support" adrenal function. If they don't start to function again by your reducing pred slowly then it is unlikely they will do so and you just need to use pred or hydrocortisone as a replacement therapy. The only benefits of the so-called supplements is to the vendor's bank balance!
I'm sure I must have forgotten something - ask if it isn't clear.
Sorry to say, we dreamed up splitting on our own. Read on the sight about splitting, but should have read further. GCA a bit different than PMR. Her body needed that 18 mg in one shot.
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