Jaw claudication & tongue cramping were my worst symptoms pre-diagnosis. Have had upper back teeth pressure off & on while tapering from 60 mg. If ignored, it SOMETIMES gets worse and other symptoms start to show up. The usual temple pings, scalp tenderness, and 2 weeks ago, flashing lights in my one good eye. Yikes! A first! So back up to 40, then 50, 40, now 35. Felt great all day yesterday and up until tonight. It’s back. Dentist helping to rule out any dental/bone loss/whatever issues. (Have history with that) Bottom line...could various inflammatory foods be causing it? I’m wondering if almond milk could be the culprit? Ever heard of foods bringing symptoms?
GCA-Upper back teeth pressure : Jaw claudication... - PMRGCAuk
re: "flashing lights in my one good eye". Did you lose the other eye to GCA?
What are your blood inflammatory numbers [CRP, ESR]? You need to get them into the normal range if they are high, to avoid more vision loss; it could require a pulse dose of methyl pred by infusion; 500-1,000mg/day for 3 days. I doubt foods are involved. see link from opthalmologist who treats GCA with vision loss. webeye.ophth.uiowa.edu/eyef... excerpt:
" The advice to base treatment on the clinical picture, rather than laboratory tests (i.e. ESR and CRP) may be true for polymyalgia rheumatica patients. But it can be dangerous for patients with GCA, who may lose vision irrevocably without developing any warning systemic symptoms at all; moreover, 21% of patients with visual loss have occult GCA. I have found that the only trustworthy and safe parameters to regulate the steroid therapy and to prevent visual loss are the levels of ESR and CRP, and nothing else.[4,5,7] ...........
The primary objective of treatment is to prevent loss of vision in the fellow eye. I have found that in spite of the starting intensive corticosteroid treatment, there are a few patients who are still likely to lose further vision during the first 5 days of treatment.5"
CRP should not be higher than 9 mg/L. [lower numbers under 3 would be better]
There have been discussions. Perhaps do searches on key words?
Has been discussed in the past - but most of us have found that you can't be that general - when I eliminated nightshades all it di was made my diet boring. Symptoms didn't change at all. Some people have found that tomatoes have a effect but nothing else does. Or carbs. Or alcohol. Everyone is differnt.
Thank you. Yes, loss of sight due to GCA. Oddly, my bloods were normal that day and for every test since, except for 1 set of tests. 2 days after head concussion, SED 15...highest ever. CRP that day was 3.4. Highest ever for me. Rheumy didn’t say up your dose. 1 mo later, flashing lights & other GCA symptoms. Do u think concussion, results & symptoms are related? I do, but what do I know? Lol. Occult GCA? Thanks for your help and the link! 🤗
re: concussion. Yes could cause brain injury & symptoms like flashing lites.
Another excerpt from article by Dr Hayreh at UIOWA.
"Maintenance dose and duration of steroid therapy.
My study has shown that determining the maintenance dose of steroid therapy is a slow, laborious, painstaking job, taking months or even years. The guiding principle, obviously, is to maintain the lowest level of ESR and CRP with the lowest dose of Prednisone."
re: CRP=3.4 mg/L [assumed units]. I would still use your lowest CRP & ESR values as baseline in determining pred dose, per Dr Hayreh's recommendation. Although a CRP up to 8 mg/L is considered "normal" for those with GCA, the normal value for a healthy person cardio wise is, considering heart risk, 1=low risk; 2= avg risk; 3=high risk. To get CRP readings below 2.9 mg/L you have to get the high sensitivity test [CRPhs]. My CRP was 87 mg/L when first diagnosed with vision loss nov 2017. Now CRPhs=0.8 mg/L. Finally CRP is sometimes designated in mg/dL; a factor of 10 different. [1 mg/L=0.1 mg/dL]. My ESR now 6 mm/hr. My pred now 6mg. CRPhs TEST RESULTS
Component........................................ Your Value.........Standard Range.......... Flag
CRP, HIGHLY SENSITIVE........................ 0.8 mg/L................... <3.0 mg/L
Reference Range for cardiovascular risk
<1.0 Low risk per AHA/CDC guidelines
1.0-3.0 Average risk per AHA/CDC guidelines
>3.0-10.0 High risk per AHA/CDC guidelines
>10.0 Persistent elevations may represent non-cardiovascular inflammation.
Again, Gifford, very helpful! Thx so much! I’ve had a gazillion blood tests; most of which I have to research to see what they’re suppose to tell the dr. Mostly within normal range and dr has never commented on them. Sadly, CRPhs isn’t one of them...just checked. 😉 will make sure that gets done at my upcoming appointment. I will be armed with all of the info you’ve so kindly shared!
So, is your lifetime plan to stay on low dose prednisone and forego MTX and Actemra? That’s the plan and category I think I fall into and I’m excited just thinking about it! Sounds easier, better chance of preventing total blindness, and fewer side effects from meds. Maybe I’m missing something, but for today I’m enjoying this dream!
It need not be a lifetime plan - but it is unusual to get off pred in the 2 years so many doctors think is normal - in fact barely 1 in 5 manage it. Someone recently spoke about a man they knew who got off pred for PMR after 11 years.
Have I told you - my ESR bumbled along at 16-18 during a major flare a few years ago: apparently "in normal range" so was never remarked on but MY normal is really low single figures. Don't just accept "it's normal"
I’m just surprised by my rheumatologist’s thoughts this last week ... “it seems we’re not able to wean her prednisone as quickly as we’d like”. Make an appt soon to discuss another med to control her GCA.”
We had talked about starting Actemra use this coming October. I have only been on pred for 6 mos. Not so long, right? It’s like the research papers mentioned. Opthamalogists put sight first, period. Rheumatologists care about it, but also the rest of the body.
After only 6 months I woud be reticent about Actemra - but then, in the UK you wouldn't have it funded just like that, you would have to be struggling and had several relapses. Does one need such a heavy gun if the relapses have been triggered by a rheumatologist's fixation with getting the patient off pred? Smaller steps with the reductions almost always are more successful.
And Actemra does NOT control the cause of the GCA - it helps control the inflammation, it is a very expensive steroid sparer. It doesn't work for all patients to get them off pred altogether though it does get most to a lower dose. There are some people on the forums who have had some pretty unpleasant side effects - if you haven't seen their posts try using the search function or start a post asking for experiences.
My short term plan is to get down to 5mg by my next rheumy appt in july. Am now at 6mg
starting slow taper to 5.5mg. I have had 3 flares going below 10 mg but taper now succeeding with DSNS method. My rheumy had suggested MTX but I turned that down. Actemra was previously considered but didn't seem needed. My rheumy wants me to continue tapering pred to 0mg but I expect I will need to continue on low dose pred. to save eyesight. I see a neuro-opthalmologist to follow my vision as affected by GCA. Another consideration for you is to have imaging of the aorta to make sure you don't have aortitis.
I was diagnosed for GCA Nov 2017 and had an MRA of the chest Dec 2017 showing I didn't have aortitis. My sister has GCA and also aortitis requiring open heart surgery. Further discussion on this at healthunlocked.com/pmrgcauk...
Thank you so much, gifford7. You’ve been so helpful! I will talk to Rheumy about the MRI at our next visit. I had EKG readings for 3 hospital days at the start, Oct 2018, and 1 ECHO. Heart was fine. I was thinking MRI could wait until Oct this year. Thoughts?
So sad re: your sister. Thankfully, a successful surgery? Two in one family...hmmm. Ages? (If ya don’t mind)
re; yes MRA/MRI can wait
re: my sister. Diagnosed with GCA with vision loss 1 eye and PMR in 2010 at age 70.
No MRA at that time. Subsequently treated by GP, not rheumy. At a routine physical in 2017 a heart murmer was detected. She was diagnosed with aortitis; 5.5cm aneurysm and aortic valve regurgitation. She had open heart surgery in 2018, repair aneurysm and replace aortic valve. Now OK but the cardio surgeon said it was a close call. Here are reference links & treatment guidelines:
pmrandgca.org.uk/ Polymyalgia Rheumatica and Giant Cell Arteritis Scotland