I know I’m having a flare-rheum disagrees

[Birdfriend]

Hi Friends- I was diagnosed with GCA in April ‘23 after a five day hospitalization. My symptoms: severe headaches, teeth and jaw pain and excruciating right ear pain. Finally they figured it out. Started on 60 mgs of Pred and Actemra. Dr. withdrew Actemra in Feb. as she was concerned about a neuropathy that I developed in my left leg. Anyway, after several months ( Jan, Feb, March) of muscle , nerve and joint pain, I started feeling better- I was swimming in therapy and doing Pilates.

Got down to 2.5 mgs. Well, as they say, all good things come to an end. For this past week, my symptoms from the ‘early days’ returned. Head pain, pressure above right eye, and bad right ear pain with bad tinnitus. Contacted Rheum, said I believe I’m having a flare- tried over the counter meds- nothing helps. I must need to increase Pred. Her response, No-do not increase Pred- make appt with ENT( ear , nose, throat doctor) you may have infection , in meantime, use Tylenol.

My husband(a doctor) and our dear friend ( a doctor) who has followed my journey, both think I definitely need to increase the Pred.

I wrote another email to her but she still insists on no increase. It’s nuts. So we’ve decided to increase the Pred and follow DorsetLady’s Flare Protocol. But before I start I want to get your thoughts. Thanks friends.

[Birdfriend]

I meant to add that I had my blood work done yesterday and my inflammatory markers were normal.

[SnazzyD]

Difficult. To have got to 2.5mg in a year and now without Actemra makes me want to ask the Rheumy, what makes them so sure it isn’t a flare? What makes you think it isn’t an ENT infection other than similarities with your early symptoms? How much Pred have you increased to? Has it helped?

[PMRpro Ambassador]

To get from 60mg to 2,5mg in barely a year without Actemra is extremey fast. GCA is very prone to flare in the first 18 months and the literature admits that the most common reason for a flare is reducing the dose too fast or too far. The blood markers often lag behind so that isn't entirely surprising.

Like Snazzy - I would want some really good justification for this NOT being a flare given the similarity with what is a fairly unusual original presentation. Though I also would want to know your justification for being so sure it isn't an infection. I assume your onside pair of doctors have examined you - rheumy hasn't has she?

What are you increasing to and has it worked?

[DorsetLady PMRGCAuk volunteer]

What dose of Pred were you on when you stopped Actemra?

Although you say you are down to 2.5mg, have the symptoms suddenly come on, or have they been creeping up?

Depending on answered that really gives a clue as to what dose you can drop back to… guess you have gone up to 7.5mg or thereabouts.

.. and did the Tylenol help at all?

Inflammatory markers may still be low due to Actemra - not sure how long that takes to exit system… but as we know even if they do increase it can be some time after symptoms appear…

[PMRpro Ambassador in reply to DorsetLady]

2-4 months for Actemra to be entirely out of the system.

[DorsetLady PMRGCAuk volunteer in reply to PMRpro]

Thanks…

[Birdfriend in reply to DorsetLady]

Thanks to everyone for your quick responses. I stopped Actemra at the end of Feb. ( I was on 10mgs. of Pred) as per Rheum’s directive. My joint, muscle and nerve pain slowly decreased . Until I was really starting to feel like my old self. Swimming really seemed to help. I continued to slowly decrease Pred. It was when I hit 2.5 a week ago that I started to feel ‘shadows’ of former symptoms. Hoping it woul recede, I took 800 mgs of Tylenol to treat. But pain continued to increase. I didn’t want to say it out loud but I knew what was happening. I have the exact same symptoms as when it started 14 months ago. It’s been over a week since I dropped to 2.5 and that is when it started.

My rheum has not examined me. It’s a holiday weekend here so hard to get timely responses.

I should add that when I was first was symptomatic with headaches, I kept telling ER about my severe ear pain. An ENT was called in, examined me , looked at ct, and said she saw nothing.

I’m so reluctant to increase Pred but think I need to asap- despite what Rheum has said. My husband agrees.

I hope I answered everyone’s questions.

[DorsetLady PMRGCAuk volunteer in reply to Birdfriend]

You do need to increase…. otherwise it will only get worse… and 10mg to 2.5mg within 3 months is absolutely bonkers…

[PMRpro Ambassador in reply to Birdfriend]

"My rheum has not examined me. It’s a holiday weekend here so hard to get timely responses."

GCA is a medical emergency - like a stroke or heart attack, They don't wait for holidays ...

[Birdfriend]

Thank you friends- I will begin the flare protocol today and will let you know how it goes.

[sidra1968]

I'd be looking for a new doctor. Please keep us updated.