Atypical presentation of GCA?
Posted , 6 users are following.
I have been back from my two month stay in Seattle for 9 days now,one day for each hour of time difference so I should be over the jet lag.Prior to my trip to to Seattle, I had been diagnosed with a broken sacrum and pubis which had been causing me a lot of pain and stress(trying to get a diagnosis).I had several stressful events right around the time I began treatment with 20 mg Prednisone which had me at that dose for about 10 weeks.So despite everything , I began tapering and got to 15mgs where I was comfortable for about a week and then I had a flare. Since I was about to fly back to Madrid, I upped the dose to 20mgs as Eileen advised .
It's been almost two weeks at 20mgs but the PMR symptoms are back in full force, plus I have malaise, nausea , anorexia diffuse headaches , diffuse abdominal pain and an unproductive cough. The way I feel now makes me feel as if I am taking pred for nothing.
I am wondering if I have become resistant to Prednisone or perhaps it's an atypical presentation of GCA.
I have an appointment with a new rheumatologist on the 17th., finally, as I had had to cancelled the previous appointment due to my trip to Seattle.
I was diagnosed by a rheumi who was in cahoots with my husband -both are unprofessionally paranoid about the use of Prednisone for PMR. If it hadn't been for this forum and the guidance from Eileen, I would have perished!
My plan was to stay on the 20 mgs till I got over the jet lag and then go back down to 15. But the way I feel now, Im not sure what to do till I see the new rheumi.
0 likes, 6 replies
EileenH mimi1950
Posted
No chance of seeing that rheumy earlier? You could be right about atypical GCA - although for most 20mg would be enough. The high doses are needed when vision is being threatened and often only because of that. It is only just over a week since you came home - and 1 day per hour time change isn't always enough. It takes me a week to settle down after the spring/autumn changes! And you must still be exhausted.
Though of course - it could be another autoimmune problem that initially presented looking like PMR. It is such a shame your original treatment was so messed about.
Rimmy EileenH
Posted
Eileen hello again ! I am also interested in what may a less obvious or insidious presentation of emerging GCA. If I have been on around 16mg recently for 2 months of PMR - and for the last week or two but have become a bit headachy on and off - nothing dramatic - no sore jaw/scalp or anything intense - just mainly sinus areas which I have assumed are allergy (and higher initial doses of pred didn't alter) - would going back up to 20mg ( as you appear to suggest here) provide sufficient 'protection' from a GCA disaster if I don't have any of those really obvious vision issues ?
I will be seeing my GP again shortly just wondering if I should take a higher dose of pred in the interim (obviously rather not).
Thanks
EileenH Rimmy
Posted
No - I'm really not convinced that raising the pred dose is a good idea for all sorts of reasons, one of which I mentioned in the last paragraph of my reply to mimi: it may not have been PMR and it may not be GCA but something else. Increasing the pred dose may merely mask what is really going on - and if your higher doses didn't work before, why should they work now? If someone started with fairly classical GCA symptoms and on reducing the dose they start to sneak back in, that is one thing. Assuming that other symptoms that appear is GCA is another. Mimi had increased her dose back to 20mg to cover the flight from Seattle to Madrid because she was in a lot of pain and it was going to be hard to cope on that flight.
Pred itself can cause headaches. You may have had a cold or something recently that the dose of pred you are on is masking - I haven't had but one cold a year since I've been on pred. When I have it has been a humdinger - the lighter infections have probably been hiden by the pred which suppresses much of the inflammation.
It is also very unlikely that 20mg would be enough to protect you from "disaster" - when people are threatened with visual problems, they use doses more like 60mg and up. Those are doses that are thoroughly unpleasant to be on for most people and which lead to a lot of side effects quite quickly. You can't stick there "just in case" - because the disaster is a relatively rare occurrence and while it could happen to anyone you can't keep everyone on high dose steroids.
Rimmy EileenH
Posted
Thanks Eileen - some very logical thinking - something I seem not to be utlising well at present due to all the emotional 'ups and downs' of all this stuff ! I was very hesitant to up my dose any further for all the reasons you point out so I will not do so now but talk over with my GP what else might be causing these sinusy aches and pains.
Once again I really appreciate your always sound advice - i'm sure people on tis forum sleep much better after a chat with you !!
Best wishes
Rimmy
mimi1950 EileenH
Posted
No, Im afraid I have no way of getting in to see the new rheumi but I will go to the ER if I get any visual or other urgent symptoms.
It's strange how well I felt upon taking 20 mgs and subsequently when I tapered.I know exactly what you mean about the messed up management from the start, Eileen,....and good thing that I followed this community's "protocol".Hopefully the new rheumy will be normal. When I went to get a dexa scan in the very beginning after being diagnosed, the technician that did the test ,who is also married to a doc that works in the hospital , asked me who was my rheumi and when I told her, she whispered to get another one immediately as the one in question had a "severe personality disorder"!
Thank you Eileen ..They should name hospitals after you!
ClaireJG Rimmy
Posted
I agree with you Rimmy! We all appreciate Eileen's wisdom, experience and advice. Thank you for always being there Eileen!
When I first investigated this forum, all the posts I encountered were very dated and I was fearful that this "Eileen" who always seemed to hit the nail on the head was no longer active on the forum. I wondered if she was better and had moved on... Thankfully she's still here for us.
Thank you also to all the other experienced forum members who take time out of their days to respond to the many requests for help, advice and support. We appreciate you. After nine months of this condition, it's still early days for me and I know I still have a long way to go.