GCA concerns

[Bummed24]

I have been on Prednisone since January for PMR, and GCA. 60 mg. x 6 weeks, and then at 40-45 mg. for four months. Recently tapered to 30 mg. three weeks ago. I have had 5 Actemra infusions of 400 mg. since February and began weekly Actemra SQ injections earlier this month. Five injections so far.

I seemed to have flared after two weeks at 30 mg. (Temporal headaches, scalp tenderness, jaw pain, buzzy feeling in my head, ear pain, weird tongue sensations, mild visual blurriness). All the usual's. No help from Tylenol. I upped to 35 mg. for a few days, then up to 40 mg. for past 5 days with initial relief. Now I have intermittent return of the afore mentioned symptoms.

The symptoms, when they return which is about half the time, seem to worsen in the evening. I split my dosage, taking ten mg. after 2 AM, and the remaining dosage round 7AM.

Is this the normal progression of stubborn GCA? It's getting a bit old. My rheumatologist is quite concerned about steroid toxicity. I have had an MRI of my head and and EMG which were OK. My rheumatologist recently prescribed Gabapentin which didn't minimize my headaches. Now he is thinking I don't have GCA, and encourages a taper in a few days.

I do experience weird feelings with position changes, (bending over alleviates them )and my limbs feel heavy at times. My heart rate elevates easily with exercise, but does drop readily when i rest. I feel better after gentle exercise.

My symptoms seem so classic. I no longer have the fevers and night sweats, so that is the one positive in this seemingly long lasting journey. Should I request a referral to the Mayo Clinic in Minneapolis? Or is this just a stubborn progression i need to wait out and manage? Or a misdiagnosis as my rheumatologist seems to think?

[SheffieldJane]

This does not sound typical. I would ask for a referral to the Mayo Clinic. Good luck!

[SnazzyD]

Well I don’t think anyone can say your rheumatologist has half baked the treatment. You’ve had decent doses for a decent length of time and Actemra as well. A referral might be in order.

Does it happen on both sides?

[Bummed24 in reply to SnazzyD]

Yes

[Bummed24 in reply to Bummed24]

Yes..it just seems so unresponsive.

[DorsetLady PMRGCAuk volunteer]

Is this the normal progression of stubborn GCA? It's getting a bit old.

Flaring at 30mg? Quite possibly normal.. and even though you are on Actemra, it’s not always the magic bullet that doctors think… it is for some, but certainly not everybody. But would have hoped that the length of time spent on 60mg and 40-45mg would have sorted out the GCA

GCA getting old? Not at 7 months it’s not.

However do agree with others, that may a review is required.

[PMRpro Ambassador]

There are at least 3 mechanisms that can contribute to the inflammationin GCA and they are all at play for about half of GCA patients. Actemra only works on one of the three and if the other two mechanisms are very active you could easily need more than 30mg after only a few months on Actemra. It doesn't work instantly and there was another patient on the monthly infusions who found their symptoms flared after about 3 weeks - the Actemra occupies the receptors the inflammatory substance IL-6 needs to exert its effect. They are constantly being replaced so while at the begining of the month all seats were occupied, by halfway through the month there are empty spaces and IL-6 grabs them as they become available and can work again. The injections may take a few months to fill them but that is being topped up every week after that with the injections. So there are 2 potential reasons for the poor effect at present - I think you probably need more pred for a bit longer and see if the injections work better over time.

How was your GCA diagnosed? Did you have a positive biopsy or ultrasound? Has the doctor considered this may involve large arteries in the trunk as well so the burden of disease is extra high?

[Bummed24 in reply to PMRpro]

Thank you, thank you, to all four of you for responding to my distress. I can't tell you how reassuring it is to read your words. I don't know anybody who has lived with PMR or GCA. Knowledge about these diseases seems to be limited in the medical community here. (My history shows a rough start to the diagnosis.) Probably because so few of us have this diagnosis. I have felt so alone. This forum has been a life saver. It feels like somebody else cares. Thank you so much.

No, I have not had a biopsy. I was started on Prednisone early on for PMR, and GCA diagnosed weeks later, on the basis of symptoms. Ultrasounds are not offered in this area...not even in Denver. Nor PET scans from what I was told. Early on I did have both head and chest CTs which were negative.

It is good to be reminded that the GCA journey is a long one. It gives me hope I may not live like this forever. I am not too fond of being on steroids this long, and dealing with the side effects. I was actively hiking and biking before, and I miss it. Thanks for letting me whine!

I did request an appointment with the Mayo Clinic yesterday, and am waiting to hear from them.

[PMRpro Ambassador in reply to Bummed24]

The others will say the same - it is why we are here. And hopefully you will get someone who knows that they are doing but it isn't guaranteed. Rochester was the great place for PMR and (I assume) GCA but that team is older and maybe no longer there,

[Grammy80]

Oh, Bummed 24....first of all, I'm so glad to hear you called Mayo!! They literally saved my life in 1985. I've been dealing with GCA since August 2019....you can read my bio and posts for the details that are so familiar to many.

This forum saved my sanity. Like you, I'm in the States and recently encountered a nurse in the ER who told me that I was her first GCA patient in 8 years. It isn't a given that all GPs, PCPs, or even rheumatologists are well-versed regarding GCA. Some just think the end goal is to get us off pred...not true. The end goal is to keep your sight on the lowest dose possible, in my kind of humble opinion.

I've been on Actemra injections and pred since 2019 and just got to zero in June 2024. But, it flared after a month even though I remained on Actemra. The true gift of this group is support, knowledge but most of all there is light at the end of the tunnel even though the journey may be long and resemble a roller coaster~!

Now, after the ER, I'm back on 60mg of prednisone...and I don't mind it a bit. I'll taper again, and I'll have my sight. You are in the journey's hard part: getting answers and a definite treatment plan. Mayo would give you the names of local rheumatologists who may be better educated regarding GCA.

I just learned today from the opthalmologist that a flare does not have to happen on both sides...my very recent flare gave me some equal headache...but the pain hammered my left side from top to bottom.

I recall how I felt in 2019 and then met some 'older timers' ...they made it and I knew I would.

I'll be following you to see how you progress, and please keep us all up to date.My best, remember, you are never alone—that is the whole purpose of this forum.💞

[Bummed24]

You are such a gem Granny. I have been impressed by your irrepressible positivity. This, despite your most recent setback. I hang onto your words, and those of others on this forum to look for light.

And with a wry sense of humour, we are still walking and talking!

I have learned most everything I know about PMR and GCA from this forum. There seems to be such a scarcity of knowledge in this medical community re: these diseases. My understanding is that Olmstead County in MN has a higher percentage of people with GCA. That's why I am hopeful the Mayo Clinic will be able to provide reassurance and/ or guidance in managing this disease.

And sending prayers to you for a rapid taper off the 60 mg. !

Quick question....anybody else experience a sore tongue and roof of mouth with GCA?

[PMRpro Ambassador in reply to Bummed24]

Sore tongue happens, not sure about roof of mouth. Are you sure it isn't thrush if you are on pred?

If you want to hear from more than me, DL and Grammy you need to post the question as a new thread.

[DorsetLady PMRGCAuk volunteer in reply to Bummed24]

As PMRpro says could be thrush… I did have an episode early days in high doses of Pred - not really sore … just annoying.

Thrush does get mentioned quite a bit- so worth new post..you’ll get more replies and probably related posts.

[Grammy80 in reply to Bummed24]

We all hold each other up....I answered your post re: soreness...💞

[Bummed24]

Oh, OK. Will post a new thread. Thx!