Thank you all for giving me insight into your journeys.
I was diagnosed by my ophthalmologist mid December 2020 after a biopsy and a crp of 111 and began 60 mg prednisone which alleviated most of my symptoms which included hip pain, blurry vision, jaw, dizziness, night chills/sweats, and fatigue. Thankfully headaches were mild. Down to 45 mg now and symptoms have returned though very slight.
I haven’t connected with a doctor (other than ophthalmologist) who knows anything so I’m glad I found your site.
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Toast4
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Hi Toast4......and welcome to the community. Yes......lots of reliable and trustworthy advice to be found here, and thankfully some very informed and knowledgeable people to advise us all. However, I feel just slightly concerned that for such a serious and complex condition, you're not under the care of a rheumatologist, or at the very least, a doctor. PMR/GCA are both serious conditions that need managing and monitoring on a regular basis. The progress of the disease will often involve the emergence of many unpredictable symptoms, and the medication will often produce many different side effects.
As much as this site is able to befriend and support us all, it can only offer advice and report on other people's experiences.........all of which are incredibly invaluable tools to help us on this journey, but are also meant to be there to 'support' the medical professionals who oversee our management of the disease......and thus fill in the gaps when those same medical professionals manifest a lack of understanding of the condition or don't seem able to give us the answers we need! (As frequently happens!) We often require regular blood tests, sometimes scans, etc..........is your opthalmologist able to arrange all this? I live in UK, so not sure of the processes over there.
Agree with Kendrew you need to be monitored particularly with GCA and especially during the first 6 months when you are most likely to flare. This is not an illness you can manage without proper medical guidance.
Bit concerned that you have a return of some symptoms - and the fact you are down to 45mg already. Really you need to be at starting dose for at least 4 weeks- but I’m probably guessing you were there for 2-3 weeks.
Plus although it is relatively easy to reduce high doses with GCA, you must take account if any return of symptoms- nit just continue tapering.
Where in Vancouver Island are you? We have another lady on the forum who spent a great deal of time in Sooke looking after her grandchildren while mum worked all over the place. They have flown the Island nest and she has moved - but is currently in the warmth in Panama where she got stuck tahnks to Covid! I also know a few in Vancouver itself.
I would say that getting from 60 to 45mg in barely a month is a bit fast - and the return of symptoms seems to confirm that. Often patients need a month at 60, a month at 50 and so on. Do speak to your opthalmologist. Are they intending managing you? Many do and it depends on the country whether it is a rheumy, an eye specialist or a neurologist who takes the oversight. However - eye specialists are often more aggressive because they are so aware of the risks of loss of sight.
is an outline of the approach taken by one group in the UK - and Dr Quick is still using it as her basis 9 years on so it has stood the test of time. But even that is only a guide - every taper must be tailored to the needs of the individual patient.
I’m on Vancouver Island as well, in Nanaimo, so would love to connect with others to find out who the knowledgeable physicians are! We’re lucky living here in the pandemic, I would not like to be in a big city without nature surrounding it to get out and enjoy. However I am usually down in my native NZ enjoying summer at this time of the year, maybe my body is rebelling by developing PMR!
Try putting up a post looking for contacts on the Island. My friend in Pitt Meadows doesn't use the forum now but I think there are others in Western BC
Hello. I’m in Campbell River and happy to be here rather than a big city during these trying times.I have been in telephone contact with an internist here who has accepted me as a patient and will have an in person appointment with her about the end of March. She seems somewhat knowledgeable but has said she/we will consult with a rheumatologist in Victoria if necessary so sorry I can’t be helpful.
I’m glad you have made contact with an internist, hopefully she will be aware of other things CGA may bring along and good that she is open to consult a Victoria rheumatologist and see you in person. What a glorious but cool day, I think I’ll go for a walk along the beach!
Morning! Just reading some old files and want to tell you that I am in North Saanich and have a wonderful Rheumatologist in Victoria; she also works out of the Arthritis Centre nr Jubilee Hospital. you may want to ring there and ask about consulting etc.
You should see a GP or rheumatologist if it is GCA or PMR. As I learned early on, this is a journey, and generally at least a 2 year journey, and balancing the amounts of steroid is something that requires professional input. This site is excellent for a sounding board, and I have take the information here to my rheumatologist, but do put the "horse before the cart>"
Prednisone has been like a miracle for me. Nearing 2 years on the med I have tapered to a current 7mg/day from 60mg. I was down to 5mg/day: however; symptoms of stiffness in hips, thighs, neck, shoulders, and pain in upper arms to elbow brought a return to the 7mg/day dosage. I do tolerate stiffness but am currently pain free
which is a wonderful gift. The only side effect I have noted from the
prednisone was a "moon face." I do have a rheumatologist that is a
great listener and a huge support for me. Born in 1936 I need that.
Hi Toast4 whereabouts on Vancouver Island are you? I’m Nanaimo but have PMR with some GCA symptoms just appearing seemingly. Let me know if you find a good Rheumatologist or Vascular specialist on the Island please, it sounds like that should be a priority for you. Though I applaud your ophthalmologist for the work done so far. My kids say come to Vancouver, but I think we’re stuck with VIHA.
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