My Name is Gord, 68 year old male who decided to retire in January and enjoy life and 1 week later was in the ER with a temperature of 104 pain and fatigue in the legs and arms and of course vision issues with the right eye.
Managed to get in to see a neurologist relatively quickly and she put me on 60 mg of Prednisone right away, this probably saved my vision as I was about 10 days in already.
I have seen the rheumatologist and a neuro optamalogist and along with the neurologist they all say it`s GCA, I have a dopler ultrasound scheduled for tomorrow to help confirm the diagnosis.
I am currently taking 50 mg of prednisone and other than the fatigue in my legs I feel okay, the steroids have helped greatly with my arthritis and my COPD.
I have a follow up with my rheumatologist next week I guess to talk about how this will be handled going forward.
I do worry about the affects of the steroids as I do have high blood pressure and a bit of a cardiac history with stents.
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spoof99
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Would say it might be GCA and PMR - legs aren’t usually affected in GCA on its own… .
Hopefully you will have a definitive diagnosis shortly, but well done on prompt action by medical staff.
Your bio doesn’t says but guess from specialists you mention you are not in UK, but probably the US, so you may find that Actemra is suggest [depending on medical insurance provider agreement] as well as Pred for your disease.. and that may help you reduce the steroid more quickly and alleviate some of the worries about high BP/cardiac issues. Sure your Rheumatologist will discuss at appointment.
This link may give you some insight into what’s ahead for you [bit long so do hold on to it and re-read as necessary]. Also please do have a read through the forum [not too much too soon to befuddle you] and ask any questions -
I am in Canada, indeed the legs were actually the first symptom very painful very difficult to walk and spent most of my time in bed or the recliner.
All the reading that I have done says very little about leg pain and weakness as a GCA symptom in fact the only real symptom I have had was the vision issues no headache no jaw pain no scalp or head issues, I suspect there might be something else going on too.
I do not have leg pain any longer but my legs feel heavy and a little akward and a little unstable.
And yes the rhuematologist has already mentioned Actemra.
Agree it doesn't sound typically GCA -apart from sight issues, so as you say may be other things going on..but at least Pred has protected sight and is helping leg pain for now -the feelings of heaviness/instability is not unusual.
Please let us know how things go. Others will be along with comments/advice.
Actually, leg claudication can be a sign of large vessel GCA. Definitely need to have that assessed. Gord, I hope you find the right help and will be enjoying your retirement soon. It’s tough to have to juggle all those chronic conditions and conflicting medications. Doctors should be able to come up with the best treatment plan for you. There are steroid spearing meds that would allow you to come off steroids sooner. Good luck !
PMR can be a part of GCA for nearly a half of patients - they are part of a spectrum of disease and they overlap considerably. Patients present with symptoms of only GCA, only PMR and everything in between and often PMR is the first thing to be diagnosed and the GCA either doesn't manifest overtly or it comes along later - sometimes a LONG time later. And vice versa - some have GCA and don't notice PMR symptoms until the pred doses gets down to that sort of range. PMR tends to hang around longer than GCA but everyone is different.
Since you must have been on high dose pred for at least 3 weeks by now, and possibly longer, I'm not sure how valuable the doppler u/s will be, the visibly features may have receded by now.
Pred sometimes increases BP and unfortunately so does Actemra but I can't say I noticed any difference when I started them, I already was on medication for atrial fibrillation which reduces BP when I started Actemra. It did increase my cholesterol but although I can't take statins I am now on alternative medication.
I’m a recent diagnosee (not a word but should be) of a large vessel vasculitis (Takayasu) with high blood pressure. The Pred made mine go a bit mad at first which did send me to urgent care. It finally settled, and I’m now on a double dose of lisinopril (gone from 2.5mg to 5mg) and it seems well-controlled. I’ve made drastic changes to my diet - no added salt, sugar or complex carbs, lots of veg and lean protein and some whole grains, a calorie deficit and close monitoring of everything I eat (MyFitnessPal) plus make sure I drink at least 2 litres of plain water a day so my kidneys can cope with all the meds I need to take now.
it probably sounds over the top, but I find that I’m enjoying the challenge and have realised how good fresh foods taste all on their own or with alternative seasonings. Of course that could be the Pred talking - I do find my thoughts frequently turn to planning my next meal!
Not a good start to your retirement. I was diagnosed with Polymyalgia and GCA in 2019. I've reduced Prednisolone to 5 mg/day from 60 mg/day initially. Although I've had several relapses I lead a pretty good life although fatigue is an issue at the moment. I also take Methotrexate and Leflunomide.
I’ve had a very very slow regime to get down to 5mg because of repeated flares. Thoughts are that I may have to remain on 5mg per day. This is the agreed position and has been for the past 9 months. I eat well sleep well don’t smoke or drink - a bit boring really. I am prone however to do too much sometimes, as my wife frequently reminds me. I have a bad chest cough which probably doesn’t help.
Hi spoof99. As a fellow GCA and PMR victim at 68 welcome. I was diagnosed in 2021 and after 4 yrs on pred. am down to 1 mg. I hope you don't suffer negative affects but keep in mind there is always light at the end of the tunnel. It's not the way any of us wanted to spend our retirement but we don't always get our way. Staying positive helps.
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