I have been diagnosed with PMR for 4 years and have been on prednisone the whole time. I have learned to reduce slowly because I will flare if I move too quickly. Recently I have been on 2mg a day for the last 6 months feeling good and ready to move to a lower mg. I am an active 69 yr old and walk, hike or bike over 5 miles each day.
I was on an extended trip, traveling and then taking care of elderly moms. It was full of very stressful situations with many moving parts. I started with a temporal head ache that lasted over a week that would wake me up in the middle of the night with "brain freeze" (like what you get when you eat ice cream too fast) and could not sleep. After a week of living with it I contacted my rheumatologist long distance and she prescribed 40mg of prednisone to start immediately and to go to the ER if I developed further symptoms. Within 4 days I developed tired jaw and blurry vision. I went to the ER.
They immediately gave me a CT scan and started 1000mg prednisone IV for the next 3 days, taking regular blood tests each day. I would continue with 60mg a day for the next 2 weeks after that and reduce by 10 mg every two weeks. They transported me to another hospital that had a rheumatologist, neurologist, ophthalmologist, and vascular surgeon on staff. These doctors found no damage to my optic nerve nor any brain trauma. My inflation markers were high (as usual for me) and white blood counts were elevated along with glucose levels. These specialists consulted and decided I should have a biopsy to confirm a diagnosis of GCA.
However, the rheumatologist failed to schedule the surgery with the vascular surgeon, during the last window of availability, and was not able to get it done for another 5 days. The team felt that I would have too much steroid in my body by then to give an accurate picture and that my treatment would remain the same regardless if it was negative of positive due to the nature variability of the test.
I am back in my own home turf now awaiting appointments to see my own doctors here.
Questions I'd like insight on are:
1. Can GCA be triggered by highly stressful situations? Could this all be stress reactions and not GCA at all? Have others been triggered by stress?
2. How will this very high dose of prednisone for this long affect my body long term? How can I avoid the tremendous amount of weight gain I expect? Does this seem like over kill of prevention? Will GCA continue to be in my future? Will I always be on prednisone?
3. Should I have quickly transferred to another hospital that could have done the biopsy test? How would that have made a difference in my future treatment?
4. How do you best describe PMR and this possible GCA to family and friends and why your personality and body may be affected by the extreme medications?
Any thoughts, feelings, or opinions would be welcomed. Thank you for reading.
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Mooreby
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Stress definitely can affect PMR and GCA and make them flare - and PMR can be a symptom of GCA.
The 3 day pulse therapy is a recognised way of initially GCA management and a study did find that in the longer term it resulted in a LOWER cumulative dose of pred. Cutting your carbs drastically will help minimise the weight gain - especially processed carbs and added sugar. Limit fruit and root vegetables. There is no reason at all you have to expect massive weight gain as a result of the pulse therapy.
The vast majority of GCA patients do taper the pred and get off it - though it often takes 4 or 5 years rather than the 2 years so beloved of many medics!
No - the biopsy may have been the gold standard diagnostic tool but it is not definitive. If it is positive it is 100% certainty but its rate of success is less than half! There are many reasons for that. the temporal artery is not always affected, it just happens to be handy and you can manage without it, it depends on the skill of the surgeon - a bit of artery is useful, veins and even nerves have been sent to the lab! The lesions are not evenly spaced so they may be missed. And other things including a lot of pred. So a negative biopsy doesn't mean it isn't GCA - it means they didn't find what they were looking for.
This set of videos was made to explain to family and friends, originally in the form as a DVD it is now online
Thank you so much for your information and the resources. I truly appreciate the confirmation of my treatment and future out look. I'm glad to know there is support here when there is so little in the general out there for us. Thanks from California!
sorry to hear you have GCA, but good on treatment....
1. Can GCA be triggered by highly stressful situations? Could this all be stress reactions and not GCA at all? Have others been triggered by stress?
Stress most certainly can trigger GCA...
2. How will this very high dose of prednisone for this long affect my body long term? How can I avoid the tremendous amount of weight gain I expect? Does this seem like over kill of prevention? Will GCA continue to be in my future? Will I always be on prednisone?
I was on high doses of Pred early days, as had sight loss...and now after 7 years in remission cannot say it as any long term adverse effects.. and it's not overkill when sight is at risk. If you cut carbs dramatically there is no reason you will gain a tremendous amount of weight.
3. Should I have quickly transferred to another hospital that could have done the biopsy test? How would that have made a difference in my future treatment?
Biopsy is never 100% whenever you have it... if the tiny sample has no giant cells in it you can end up with a false negative when you actually do have GCA, and the doctors treated you on your symptoms - which is exactly what they should have done.
4. How do you best describe PMR and this possible GCA to family and friends and why your personality and body may be affected by the extreme medications?
Thank you so much for responding to all my questions and the resources you provided. I truly appreciate your time and experience. Thank you from California.
Was 1,000mg a typo...I think you probably meant 100mg which is still a lot. I've have GCA. I was put on 60mg then a year later I had a flare-up and put back to 40mg. Another year passed, another flare-up and I was put back to 60mg.
1. Is it can be caused by stress - although I have no idea why I had my recent flare-up because I was happy but I may have been reducing too fast. I really shouldn't listen to the rheumatologists!
2. Yes, I did put on the 10 kilos of weight, then started to lose. With each flare-up some of the weight piled back on and then gradually it fell off again.
Being at such high levels of Pred really knock you out - well they did me! I've now come down to 20mg and I can actually go for a 20 minute walk! It is brutal when these things happen; I've actually enlisted the help of a councillor because I was told that I might never get off Pred and I was the one who was going to kick it out of the ball park in 6 months; it's been three years. The second flare-up started menopause again - quelle joy!
Not everyone's journey is the same. I do have a friend who went into remission after 2 years on Pred and it hasn't reoccurred for 15 years so please don't worry too much.
Follow-up care within 72 hours after starting therapy should be arranged. Alternatively, patients with acute visual changes from GCA can be started on intravenous (IV) methylprednisolone at a dose of 1,000 mg daily for 3 days
Thank you for your time and response. I indeed was given 1000mg of IV prednisone each day for 3 days and now on 60mg for 2 weeks and will reduce down by 10 for each 2 week period. I do feel a bit like superwoman now...no aches or pains of any kind. I walked 4 miles yesterday and still feeling powerful. I do notice little bits of headaches coming and going, but not sure if this should be a concern or not. I can't imagine I don't have enough steroids in me!
I am watching my diet of sodium, carbs, and sugar, but still feel a bloating in my mid section. (I'm on Pantoprazole for my stomach) My skin is very dry, but feels full and a bit tighter. Haven't been on the scale yet, Don't want to face that yet.
You may feel like superwoman [been there!] - but it's a false steroid induced energy - so don't overdo it....and you may still have intermittent headaches for a couple of weeks, so long as they don't get any worse should be okay... so just monitor but don't be paranoid.
Whilst you may be able to reduce quite quickly on the higher doses, don't get too blasé about things...and you will probably feel the energy diminishing as well... so listen to body...
Good luck.. but if you're unsure about symptoms at any time then please contact your medics - too fast a taper can easily cause a flare and 2 weeks on current dose isn't always long enough to know it's adequate before you drop down.
Slightly different circumstances as I had already lost sight in one eye - but I was on 80mg for 2 weeks, and then 8 weeks at 60mg [not suggesting you need that long]- but I do think 3-4 might be better.
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