Good morning folks! Haven't posted in a while, but would love a bit of advice. Been on Actemra for four months and have reduced Pred in that time from 9mgs to 7mgs using DSNS method. Rheumy wanted me to go 1mg a month but I'm trying to be cautious. Bloodwork every 6 weeks. Last month the GP receptionist forgot to put ESR request on the test, so I only have the December reading which was 2 and the latest February ESR which was 16. I know it's still in the normal range, but I'm getting deja vu from 18 months ago when ESR went from 2 to 18 then 27 (pain returning, etc) and had to triple the Pred up to 20mgs before it started to come down again & I felt better. It has taken me 18 months to get back down to 7mgs. I'm currently waiting for a return call from Rheumatology for advice. I'm not having any difference in pain as yet, but am feeling more tired and that weighty feeling in my body in the early afternoons like my batteries are dying. Also insulin dependent, and my blood sugars have been swinging from high to low daily since being on the Actemra. Could this be an unknown side effect or is it because the Pred is reducing so maybe I'm needing less insulin? I was expecting inflammation markers to stay down on Actemra, or is 4 months on it too soon to expect this?
Stick where I am or increase?: Good morning folks... - PMRGCAuk
Stick where I am or increase?
I don’t know about your inflammation side of things but your doctor needs to be considering adrenal function now you are under 10mg. It seems many forget about the adrenal glands that have been switched off because your body has been awash with artificial cortisol (Pred). If they are hell bent on getting you off Pred, Endocrinology can become a bit of a Cinderella.
Once the dose gets low, the adrenal glands need to work to make up the short fall or you feel rubbish. For me 7mg was too low for my body to feel ok but too high for my adrenal glands to realise their time had come. I felt horribly tired and weak until about 5mg when it very slowly improved. You are wise to want to slow down your reductions because poor adrenal function can be debilitating. Do please read the link below from Mrs Nails about all things adrenal, not least because you need to be aware of adrenal crisis. Bear in mind that poor adrenal function can cause low blood sugar and sodium (salt) deficiency.
healthunlocked.com/pmrgcauk...
Thanks Snazzy that's very helpful. I will approach the GP about referral to endocrinology. I did read that struggling adrenals can cause spikes in inflammation too, so who knows if it's Actemra not working for me, something else disease wise or struggling adrenals. I have lowered my insulin to compensate for the swinging blood sugars and it's a bit better but still going high as a kite at dawn for some reason. Funnily enough, my diabetes consultant told me to increase my fast acting insulin and I argued with him, which he didn't appreciate.😐
Unless it is just to get in line for months waiting for the Endo, I wouldn’t jump yet. Testing for adrenal function can’t happen until under 5mg and Endo’s usually refuse. Any higher and it’ll usually show low function but won’t tell you how it’ll recover so isn’t very helpful. You need more time being much lower for the adrenal glands and the processes that get them to fire up, to register the lack of Pred. My Endo said even 5mg is enough to make them sleepy. I was tested at 4mg Pred and it wasn’t special but at 1.5mg it was much better. I could tell, because my energy was much better.
I see. Thanks Snazzy.
If you are on Actemra then the ESR is not relevant to PMR or GCA because of the way it works. HOWEVER - Actemra only works 100% to get patients off pred for half of patients since GCA has at least 3 mechanisms for creating the inflammation and Actemra only works for one of them, the production of IL-6, the other 2 still produce inflammation and require pred to manage them so that must also be borne in mind
onlinelibrary.wiley.com/doi...
suggests that you are right in suspecting you need some attention paid to your insulin dose due to the effect of Actemra
Thanks for the article. None of the clinicians involved have mentioned this link between blood sugars & Actemra before. I have lowered my insulin to compensate, but still getting really high readings between 3-6 am. so I have to take an extra shot through the night otherwise by morning it will be way too high to deal with effectively next day. Regarding the ESR's do you think I just wait it out & see what next month's result will be and how I feel, etc. ? Knowing my luck I'll be in the 50% who fail with Actemra.
It isn't a fail - Actemra is a steroid sparer and it certainly leads to a lower dose of pred because the IL-6 production is the main driver of inflammation in GCA. Of course the UK view on its use doesn't help, limiting how long you can have it for.
Did they do CRP as well? I asked my rheumy yesterday why he does CRP since it isn't relevant - and he said that they have found CRP rises if the patient develops antibodies to the Actemra so it is better to do it. And it is known that Actemra can mask infections because the CRP doesn't rise. I can't find anything about ESR though. You really do need to get an opinion from your rheumy.
They're supposed to both CRP & ESR every month and December I had both - CRP = 0.6 and ESR = 2 then January only CRP which was 1.0 and February only ESR which was 17. That's interesting about CRP, I'm fed up requesting these every month & something's always forgotten. Thanks PMRpro.
once I went on Actemra we stopped measuring those which was actually a bit freeing as symptoms really did rule! I took a full year to go from 20mg Pred to 3-4 mg then another 6 months or so to get to zero. That was with weekly Actemra injections. And yes felt absolute crap from 7-4 mg which I’m pretty sure was adrenals waking. You may not get to zero, but below 5mg once adrenals wake up I felt sooo much better! Good luck!
Sorry for the late reply - I didn't get an email alert for some reason. When you were reducing, did you get a spike in ESR readings at all along with the crap feeling? Anyway, to follow on from my original post, a few days after getting my ESR result of 16 (big jump from 2 to 17 in two months) the leg and pelvic pains kicked in which was a similar pattern to what happened the last time I had a flare. Because the pain came on two weeks after reducing to 7mgs and not immediately, I decided (rightly or wrongly) it had to be another flare starting. By then, rheumy still hadn't answered my call (3 days) so I followed HU protocol and increased back to dose I felt well on which was 8mgs + 5 mgs = 13 mgs and after 3 days felt much brighter, pains subsiding, able to do housework etc. Just hoping I've done the right thing as I got message back from rheumy late yesterday telling me to keep tapering and ask GP for arthritis blood test - I already know I have arthritis and the pain is nothing like PMR which these pains definitely were. So keeping with the HU advice, if this was a flare or on the way to being a flare, do I reduce from 13mgs after 7 days to say, 10mgs, then a few days later to 8mgs so long as feeling well enough? I'm just really nervous about mucking everything up again.
We stopped measuring ESR and CRP once I was on Actemra since the med makes them generally inaccurate. It did take several months for the Actemra to really kick in tho. Your symptoms may also be adrenal related. Might want to read the info in FAQ on that. You should be fine tho with following flare guidelines from this site. Good luck!
Thank you!😊
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