GCA returning

[Shanghi]

I was diagnosed Apr.2021 with GCA in emergency hospital. My CRP was at 47. Started with 60 mg prednisone & tapered down to 40mg when I finally had appt. with rheumy in June (6 wks after initial diagnosis). My CRP was totally normal & was told to taper down to 20mg. Saw rheumy again Aug. (I had slow tapered 40, 30, 27,5, 25, 22.5 to 20, even though rheumy was against it). So I continued the taper until end of this Nov. & was finally off pred. I did not take any other meds the whole time except for the daily panteprazole.

So after 601 days of prednisone I was off it ! In June (I was at 7.5 mg) while tapering, I had severe left hip pain & pain above the ankle in the left leg. Like bone pain, not shooting nerve pain. It subsided after a few days. This basically happened every time I tapered down & my rheumy dismissed it as other issues. The blood tests I had showed CRP always normal.

So now in Nov. . I had an appt with rheumy, I had successfully (?) tapered to 1mg & he told me that end of Nov. I'm off Pred! I could only schedule blood test Dec.6. So, the 1st 3 days were time for jubilation! .Then on 4th day, I had excruciating pain in my left hip & lower leg. I couldn't move!!!

The intense pain did not subside this time & 6 days later I called my rheumy (he' s only there 2 days a wk) & told him about the pain. Then he said that my blood test came back& CRP is high up to 30.

I should go back on 5mg & taper to 2.5 .& 1 mg. & he will see me in March, when I will also have another blood test.

I followed his advice, took 5 mg for 3 days, no pain in hip, but extreme buzzing in head! Decided to up the dose to 10mg, for 3 days, then to 7.5 for 5 days, still tinnitus & some slight tenderness above left temple. Dec. 23 & 24- down to 5 mg. head feels like at the onset of GCA, .Tingly, crawly symptoms in the head, momentary ear pain & slight tenderness above left temple. Also, even though I was tired, couldn't fall asleep until 4am. (usually no problem, except when I was on high dose of pred & had insomnia,)

Tried calling rheumy, but Christmas holidays for a wk. So I decided today to go back on 10 to see if symptoms will go away.

What I don't understand is, if my CRP was elevated (30) in my last blood test, how much prednisone is needed to bring it back down? Is 5 - 1 mg tapering enough ?And should it not be checked before 3 months?

It certainly feels like I'm having a flare & I don't understand how tapering down from 5 - 1 over the next 3 months is going to stop it.

Also, if I was off the prednisone end of Nov. & I presume my adrenals were functioning normally the last few months, by upping the dose, are the adrenals going to go back to sleep?

Sorry for this long-winded story, buf hopefully someone can shed some light on this. Thx & Merry Christmas, Happy Holidays!🎄

[PMRpro Ambassador]

Hmm, well, not impressed by your rheumy. They may work part time but that doesn't mean they should abandon their patients like that.

" how much prednisone is needed to bring it back down" - how long is a piece of string? And no, if it is a flare, then 5 to 1 over 3 months won't deal with anything in a positive way. You need to be at a stable dose of pred long enough to bring it down to normal AND the symptoms be gone. And then you need close supervision while tapering slowly to be sure the CRP doesn't creep up again.

Getting from 7.5 in June to zero by December is far too fast to be sure your adrenal function has recovered as well. Very few are free of GCA in so much under 2 years, it has a habit of relapsing in the first 18 months and actually, isn;t that about where you were when it went pear-shaped? We have successful GCA taperers who took a year for the last mg or two!

Where in Canada are you? Do you have an ER handy? Not ideal but if your rheumy has vanished in a puff of smoke you need someone.

[ScaredDcat in reply to PMRpro]

Wondering how you are now? Also, what was the tingly, crawly sensation from? I've had the sensation of a bug crawling on the top of my head. Is that a symptom of something? (It never lasts long but reoccurs randomly)

[PMRpro Ambassador in reply to ScaredDcat]

I assume you meant this for Shanghi? You clicked the reply button for my reply - she will see it but had you meant it for someone else, they wouldn't be notified.

[Shanghi in reply to ScaredDcat]

Hi, well am I feeling better, yes! I asked my GP to set me up for regular monthly blood tests to check CRP. So Dec. 6, it was almost 30, then in Jan, it clocked in at 2.5 & now in Feb . down to 1.5. So if that is the indicator for inflammation, I guess the inflammation has receded.

I'm at 2mgs of prednisone & pain (hip & leg) is basically gone. I will however watch the tapering very closely now & stop taper if any pain symptoms come back.

The crawling in the scalp is there from time to time, but for shorter periods it seems.

I' m kind of suspecting diet to maybe play a role. It seems when I indulge in sweets, my head is itchy. I used to find this even before I had GCA, but I think at that time it was more to do with sodium. (I never really used salt in cooking, but when I did, I got that itchy feeling but it was more all over my body.)

Î m going to write down what I eat & then note on what side effects I may experience.

I had done that the first yr &1/2 after the GCA diagnosis. Got a bit lazy the last 6 mos. for I thought I had a handle on the disease.

Lesson learned, it is never really over!

[PMRpro Ambassador in reply to Shanghi]

It doesn't tell you WHAT inflammation though. And no - not over until you have been off pred for at least 6 months, maybe more. And it can come back.

[Shanghi in reply to PMRpro]

Hi, I have a question. Saw my rheumy a few days ago, last appt was end Nov. I showed him my tapering & am back down to 1 mg since a wk now. He said that GCA flares when one us around 25 mg prednisone, I never flared until I went off pred beginning of Dec. So he said I have polymyalgia.

I seem to remember reading that polymyalgia presents itself bilaterally. Is that true?

(The only pain I had was on one side of hip & lower leg.)

All through my tapering since Dec now, I had no pain. Today, day 6 of 1 mg, pain hit again in hip. Is it withdrawal? or do I really have PMR? My CRP (tested once a mo. has been down to normal (2.0 & less, Jan, Feb & now Mar.)

[PMRpro Ambassador in reply to Shanghi]

GCA only flares at 25mg if you are trying to force to a lower dose than you need and it is about 25mg. It depends on the person and GCA can flare at ANY dose - ask the GCA patients who had a flare.

PMR tends to present bilaterally, it is a systemic disorder, but it can be worse one side than the other and if you have myofascial pain syndrome (MPS) as a major part of your PMR it may turn up sooner one side than the other.

I would want it looked at to see if you have MPS involving the piriformis muscle and causing sciatica and/or trochanteric bursitis. That can come from PMR, PMR can potentiate it but it can also exist in its own right. What have you been doing in the last day or so? Certain activities will make it worse. Something as localised as that might be made worse by PMR feeding it - but I personally doubt it is just PMR - it isn't for me and it can be dealt with much better with targeted management rather than oral pred which you need an awful lot of to really damp it down.

[Shanghi in reply to PMRpro]

Thank you for your prompt reply. I really appreciate your advice. I did remember reading that PMR presents mostly bilaterally & I was quite surprised that my rheumy would just write it off as PMR.

I have noticed it in the past( last summer) as I was tapering, pain would set in a few days after taper & last a few days.

It was last fall when i tapered from 2 to 1 mg that excruciating pain set in, again subsiding.

But when I went off it entirely, that is when pain was back. Maybe I just have to stay on 1 or 2 mg for a while until it really settles.

Anyways, going off to Spain to be with my 4 little grandkids & one of them is doing the pilgrimage to Santiago de Compostela with her class. She invited her grandma to go along. I' m determined ( apparently short route, 6 days of walking!.

So I have to be in shape!😊

[DorsetLady PMRGCAuk volunteer in reply to Shanghi]

He said that GCA flares when one us around 25 mg prednisone, 

Where did he did that one up from? GCA can/does flare at any any level if you’ve gone below the dose you need….end of!

[Shanghi in reply to DorsetLady]

Thank you I thought the same after reading all the messages here in the forum. I think people know the source etc. of their aches & pains better than a doc could ever learn in medical school.😊

[Bluey-1 in reply to Shanghi]

Glad to hear you’re feeling better and you’ve got your blood tests sorted to help monitor your situation. I have radically changed my diet and I know it is helping.