I am so sorry to be needing advice again, but I am wondering if anyone else has struggled to wean from higher doses of Prednisone for PMR and GCA.
Since late January I have been on dosages of 65mg. and weaned down to 45mg. by early April. Since then I can't seem to get below 45mg. as I have a return of scalp tenderness, throbbing headaches, ear pain, and occasional temp of 100 when I drop to 40 mg. Incidentally the elevated temp is always just on the left temporal area, never the right temporal area. I also occasionally note pitosis, and often a fuzzy-headed feeling and also tinnitus and several times jaw pain. These symptoms are present intermittently most days of the week, with some days much less noticeable. On those days I enjoy walking and simple hiking. My vision is a bit blurry, so I am having my eyes rechecked in two weeks. An earlier eye check revealed a good blood supply to my optic nerve. My headaches have never been excruciating, nor severe, like some folks describe. Tylenol usually doesn't help.
I continue with light exercise, eating a low inflammatory diet, and in general do not feel stressed. I try not to worry about these high doses of Prednisone for so many weeks. Is this just a time for needing more patience? Or might there be something else going on?
I have had three Actemra infusions, with the fourth today. My sed rate and CRP levels are normal today. They were elevated in February. My rheumatologist, as of today, is referring me to an arthritis clinic in a neighboring city for another opinion.
And next week the neurologist has scheduled an EMG. My CK is normal. I wondered why I need the EMG. The neurologist said autoimmune disorders tend to show up sometimes in groups, so she wants to check things out.
I am sure hoping my body is just being stubbornly resistant with a crazed immune system and that I just need more time to heal. I don't want another diagnosis. I was active and healthy until just a few months ago and am missing my old life.
This forum has meant so much to me, as I don't know a single soul with PMR and GCA. However all of your experiences, compassion, knowledge, and humor keep me hopeful.
(btw, I did not have a temporal bx. The diagnosis was made on the basis of symptoms and wanting to preserve my eyesight).
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Bummed24
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"I have had three Actemra infusions, with the fourth today. My sed rate and CRP levels are normal today. They were elevated in February"
Of course they are - because of the way Actemra works against IL-6 the sed rate and CRP are meaningless when it comes to monitoring the disease status and clinical symptoms must be used or other inflammatory markers.
In addition, GCA has at least 3 different mechanisms underlying the inflammation. Actemra only works for one of them, the IL-6 component, and if YOUR GCA involves the other two to a great extent then you continue to require pred to control that part. Actemra can take a few months to start to be effective - and the trials were done using the weekly injections so it is possible that the infusions aren't as effective in occupying all the IL-6 receptors but I don't know. I have to say - I don't understand why the insurance companies in the USA insist on only reimbursing the infusions, which are actually more expensive!
However - there are other things that can mimic GCA, also interfering with blood flow but in a different way. So your doctors are doing well in investigating the possibility of other things.
They are in that they are self-administered, the cost of infusions includes a clinic appointment and nurse to administer it. But there are insurance companies in the US who refuse to pay for the injections ...
I have both PMR and GCA and been on the weekly injections for 4 years. It did take about 3 months for the injections to make me feel better. I was on 20 of Pred at the time (flared every time I tried to go below that). I got down to 10 pretty quick then really slowed my taper after that. Have been on Actemra for 4 years and off the Pred for 3 and feel good.
PRO is right, checking your inflammatory blood markers becomes meaningless once you're on Actemra. It’s going by symptoms at that point. For me hoarseness and “fluey”feeling was a sign that I might be flaring. I never had head or eye symptoms, so my GCA more likely was large vessel.
Yes, and my providers are, I suppose wrongly encouraged by the low inflammatory markers, and think my symptoms should be reduced by now. Also because of the Actemra and higher doses of Prednisone.
If they would be more aware, it sure would take the pressure off of us, as patients. I hesitate to admit I still have symptoms and haven't been successful yet in reducing down to the goals they set. But hey, I am at 45mg. , not 65, so that's a bit of progress.
Agreed. I have been reluctantly honest. It's just that they seem baffled because I "should" be having fewer symptoms by now.I can say it's been two days since my fourth Actemra infusion, and my headaches and scalp tenderness have lessened a bit. I'll take it!
Unfortunately just because you ‘should’ have fewer symptoms doesn’t always guarantee you do…. but good to hear you do feel at little better after latest infusion… hope it continues to improve.
Not "admit" - you TELL them you still have symptoms, it isn't your fault. DL said the rest. They may be baffled but it is very simple: you haven't been on enough pred for long enough and it isn't an instant result. It depends on YOU, YOUR disease activity, YOUR response to pred, how much you absorb, how well your receptors work. YOU shouldn't have to know this - THEY went to uni, THEY did the lectures and exams - and appear to have forgotten a lot, if they ever knew it in the first place.
Your responses are oh so true. And it's so helpful to see it in writing. I tend to be a people pleaser, so while I do stick up for myself, I find it a bit distressing. Your confirmation is supportive.
I am still feeling better this week. Fingers crossed!
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