You may know I was diagnosed September 17 with PMR/GMA by my GP who put me on 20 mg prednisone which I stayed on for 5 days. SED rate 95 and CRP 341. After 5 days I was upped to 60 mg of prednisone due to headache but other symptoms had resolved. Saw Rheumatologist on September 26 she confirmed GCA ordered Double Biopsies which I had October 2- after 16 days on prednisone they were negative - Headache raged on. On October 20 was tapered to 50 mg of prednisone after 7 days symptoms came back with scalp pain, and jaw pain added. Intermittent hip and arm pain twinges of ankle and wrists pain. On October 30 put up to 80 mg prednisone and added Actemra- had my second shot today- I have had the headache every single day since this started in July. I don’t feel improvement since going up to 80 mg. I know it is still a bit early and there is a lot going on, just not sure if I should call out to Rheumatologist to let her know the 80 mg is not helping. Thoughts?
The Actemra does make me exhausted.
I am not scheduled to go back to Rheumatica until November 29...
Thanks for your input- always valuable!
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Mks9558
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re: "SED rate 95 and CRP 341" What are your ESR & CRP now? If still abnormally high you may need a higher dose of prednisone or possibly an infusion of hi dose pred
It did come down to normal- erp 17 and CRP 5 before the taper then went up to ERP 30 and CRP 10 when they moved me to 80 mg. But it did not go back up to the higher levels.
Thanks for the link. I have had the headache all along- for months before starting Actemra.
Hmmmm. this does not sound right at all. I'm no expert, but my horrific GCA headache and the associated neck and shoulder pains went away within8-10 hours after starting Pred. And when the Pred was increased (after experiencing two flares) the headache went away again as fast Asti came. Have they done any other tests, scans, blood work ?
Yes, all are Norma, althouyi have not seen the MRI results I am told it shows some ischemia of the small vessels. I will call in the morning and follow up. May need to pull the neurologist approved in, not scheduled until February 22 and that was an urgent appointment! But that was a specialist so maybe they can send me to the local neurologist & I can get in sooner.
It never ends it seems, my next area of concern is what to tell work about coming back. I think I will extend my leave a full 3 months but I have nothing to base it on other than 6 weeks was clearly a dream.
I think I would report to her - the 80mg may not be quite enough and a 3 day pulse therapy may be needed to get the headache under control so the Actemra can work to get the dose down again afterwards. Under the circumstances that seems a long time until the first check.
Thanks PMRpro- I will reach out to doctors office in the morning- it is just 4am here and as you can see I am not sleeping 😌- but comforted that I am thinking along the same lines as you and DorsetLady.
My appointments prior to this were every two weeks this was the first 30 day check.
You need to talk to Rheumy. A week on 80mg should have shown more improvement- can’t remember how long mine took to recede, about 2 weeks I think...but I hadn’t been a small dose previously like you.
As PMRpro says she should be seeing you sooner -a lot can hapen in a month.
Thank you DorsetLady- calling as soon as office opens over here in Oregon. I can’t imagine how many people you have brought comfort to with your kind and safe advice. I know you all have made this much more bearable for me.
Doctor is now checking my ANA; which it turns out was never tested, also redoing ERP and CPR. Also sending me to Neurologist. MRI results show chronic ischemic small vessel disease and vocally enlarged peri vascular space...do not sure what’s next.
Now back to trying a pulse dose of prednisone by intravenous infusion. In my case it took 1,000mg/d x 3 days of prednisone to bring my GCA under control, then continued at 80mg/d. see
some authors recommend an initial intravenous high-dose treatment (methylprednisolone 250 to 1000 mg/day for 3 to 5 days), after which treatment can be continued orally at the dosage recommended
by EULAR (29, e16)." Otherwise the possibility you have a GCA look alike disease may need to be explored. search on "giant cell arteritis differential". see
Here is another question did you have pings if pain in hips, arms, butt? More like twinges of what I had in the beginning before prednisone and diagnosis. They last 30 seconds to a minute or two and then go away.
No pings of pain for me, no PMR yet; only biopsy proven GCA followed 20 days later by GCA induced stroke where i got the pulse infusion of pred [1000mg/d x 3da]. Am also prescribed low dose aspirin and atorvastatin 40mg/d. Comprehensive 2015 GCA link from NIH. Giant cell arteritis: Current treatment and management
Antiplatelet agents: The use of antiplatelet agents in GCA is controversial. There are no randomised controlled trials that have evaluated the use of aspirin as an adjuvant treatment in GCA. However, in addition to its antiplatelet effects, aspirin may have a disease modifying effect in GCA................................................................Nevertheless, the use of low-dose aspirin (75-150 mg/d) is routinely recommended for patients with GCA in the absence of contraindications[13].
Statins: Statins are inhibitors of 3-hydroxy-3-methylglutaryl coenzyme A reductase, the most powerful class of lipid lowering drugs to date, widely used in medical practice. Apart from their lipid lowering effect, additional pleotropic effects have been discovered, which include anti-inflammatory and immunomodulatory properties................................To date there are no formal recommendations on the use of statins in patients with GCA.."
My cholesterol is very low-119. Prefer to stay away from statins. No need to add at this stage of the game. I am so sorry to hear of your stroke, I hope you do not have any lasting deficits. My husband had a major stroke and heart attack 9 years ago, he was a software engineer and was left permanently disabled- he had to go on permanent disability 9 years before he was to retire. I am not ready to retire- I have 5 years to go and need to get well.
Mks9558; I'm sorry to hear of your husbands major stroke/heart attack and consequences. I suffered an ischemic left MCA stroke concurrent with GCA; affecting right arm and hand, nov 2017. The arm has returned to normal but the hand is partially impaired [still in therapy]. The Stanford stroke center found out I had been diagnosed with GCA 20 days previous and since my CRP was still high despite 80mg pred, administered the pulse dose of prednisone by infusion over 3days [1,000mg/d]. re; atorvastatin--I'm on this because of the stroke. Its now standard practice to prescribe 80mg atorvastatin to stroke survivors to lower LDL. I only needed 40mg to get total cholesterol to 108. re: low dose aspirin[81mg]. Some doctors prescribe this to those with GCA; in my case also because of stroke history and arrhythmia. However I have a bleeding problem [from prednisone at 8.5mg] and cut back on the aspirin dose. I'm a retired analog circuit design engineer.
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Newbie needs some advice
What should I expect?
How high should I go?
Guess i,m needing some encouragement!
Should I increase Pred?
