GCA SYMPTOMS RETURN AFTER REDUCING PRED 60 TO 55 MG

[Missus835]

On Wednesday reduced the Pred to 55 mg. Rheumie had said reduce to 50 mg. as GCA biopsy and tests were not difinitive. Over the last 2 days both the pain along the forehead (hairline). Some jaw pain (which could be the TMJ), between shoulder blades, back of neck and left shoulder have returned. Eyes not affected.

Called the Rheumatology Nursing Station. My Rheumie is not in on Fridays. Nursing Station who are not allowed to make a recommendation (although she did say "you know where your pain was controlled, but you didn't hear it from me") suggested I call my GP (who is out on vacation until Jan. 21st). My suggestion was I go back up to 60 mg. until we can prehaps get a message to my Rheumie on Monday. A trip into the ER is not possible today.

Thoughts please and thank you?

[HeronNS]

Listen to that voice you "didn't hear" which said you know where your pain was controlled, with your own suggestion to return to 60. You only get one pair of eyes in your life and you need to protect them. I know 60 is a high level, but some people have needed even more to control GCA, and not one of them regrets it if their eyesight is saved.

Remind us (because you haven't filled in the information in your profile bio) when did you start pred and how long have you been at 60 mg?

Don't wait too long to up your dose, it will only get more difficult if the inflammation is allowed to build up. You may simply need a bit longer at the high dose if you haven't been at 60 very long. I expect DorsetLady will be here soon to offer her expert guidance.

[Missus835 in reply to HeronNS]

Hi. Will have to update the profile. I've been on Pred for PMR since Jan 2022. Started at 20 mg. got down to 11 and had a flair, then up to 14 mg a couple of months ago approximately. On Jan. 21/23 started with head pain, vision less than the quality it had been which was great with my glasses on. Pain back of neck, thru shoulder blades. Temporal (along hairline), difficulty swallowing. Head with extreme pressure on ears. Went into ER. They did a great workup. CRP was up to 24 (not that bad) but they did manage to find a Rheumie on call who immediately put me on 60 mg. Pred, which alleviated the symptoms within a couple of days. Finally saw my actual Rheumie Tuesday just gone, who said biopsy was not difinitive of yes GCA or no, but said we should reduce to 50 mg. starting the next day and of course "let's get down to 1". In my infinite wisdom, decided 55 mg. was enough of a reduction, but apparently too much as symptoms have now returned.

[HeronNS in reply to Missus835]

It's amazing after all that time of pred they said the result was not definitive, rather than negative because usually a biopsy needs to be done within a couple of days of starting pred to give a useful result. If your PMR has morphed into GCA then a week or two isn't nearly enough time to get the inflammation properly under control. In fact it seems that your attempt to taper is similar to the initial pred we take to see if it helps pain which "might" be PMR. Your reaction seems to be confirmation you need the pred. The doctor may want to run other tests, but meanwhile... Btw, did your GCA symptoms clear up completely at 60 mg?

[Missus835 in reply to HeronNS]

Yes, almost. When I touch along my brow very lightly, I get a fairlysharp pain in bi-lateral forehead, along hairline. Not a pain to the touch on the head, almost like nerve referral type of pain, if that makes sense. That did dissipate, but never resolved completely and now is there when I touch along my eyebrow, moreso on the right side. So we shall now see what the 60 mg. can do again. I think the taper down was too soon, but then she's a "taper fanatic". I do realize the necessity to taper eventually however. You're correct about being on Pred too long to really make a clear diagnosis, and as DL said, watch those symptoms very closely. They did say there was nothing that suggested a thinning of the artery piece they took which was 3 cm. Maybe they just didn't get a piece of the right section as can happen. Anyway, going to lay down for a bit.

[HeronNS]

Btw, GCA is most noticeable when it threatens the optic nerve, and also biopsy is often negative or not definitive, either because the affected part of the artery was not taken, or because previous treatment with pred has already helped the area to return to normal. As far as I know GCA can also be called Large Vessel Vasculitis (LVV) and affect any vessel in the body. So in my uneducated opinion you would be very wise to return to the higher dose for now.

[Missus835]

Thanks Heron and I have just taken the other 5 mg. I do seem to be one who is affected by even a .5 drop, so not surprised at this. Not messing with my eyes. Ophthamology saw no change in optic nerve, or eyes in general, with the exception that cataracts having grown just a smidgeon. It's always better to have a suggestion from the folks who have been most helpful over the past 1.5 years.

[HeronNS in reply to Missus835]

Your symptoms are so typical of GCA (at least what I've read, having not had personal experience) and your reponse to the pred so good, I think there should be little doubt about the diagnosis. Also when you had a flare after months on pred when still at a dose above 10 mg, even tapering sensibly which I think you have been doing, that in itself was a bit of a warning sign. Rest up and try not to worry.

[Missus835 in reply to HeronNS]

Thanks so much. Not worrying, just winging it as we usually must in Nova Scotia. Thank goodness for this forum.

[DorsetLady PMRGCAuk volunteer]

Hi

Most definitely back to 60mg until you can speak to Rheumy…as we discussed in earlier post and as  HeronNS has said just because you had a negative biopsy, doesn’t mean you don’t have GCA.

As just because a biopsy is not definitive, GCA shouldn’t be dismissed out of hand, symptoms are always key, and other tests can and should be performed.

The temporal artery is the easiest one to get at as it’s very near the surface- and it doesn’t affect sight, that’s the ophthalmic artery which feeds the optic nerve, and because that is deep in your head it cannot be biopsied.

Please let us know how you get on.. and if in any doubt, then ER…

[Missus835 in reply to DorsetLady]

Yes ma'am DL. The 5 mg. bringing it back to 60 was just taken. I totally concur with all the comments made by you and Heron. Should this not help, will venture out to the ER (who btw on my last visit report, Reason for Visit: Headache. I would never go to an ER for headache unless I thought it was an impending stroke. So...my GP discounted that report instead of calling me for follow up.

[DorsetLady PMRGCAuk volunteer in reply to Missus835]

The return of pain may have been steroid withdrawal, which is what the Rheumy may say to you.. but you cannot take the risk, especially with the weekend approaching- as we know GCA nor PMR recognise a 5 day week!

[Missus835]

Yes. I had the steroid withdrawl thought as well, but don't want to play around over the weekend. Thanks DL.

[DorsetLady PMRGCAuk volunteer in reply to Missus835]

No you don’t, maybe see how you go over the next few days, and try an even smaller drop next week, say 2.5mg for a few days, and if okay, then another 2.5mg.

More than one way to skin a cat as the old saying goes [sorry not PC days]

[PMRpro Ambassador]

It's only a few days - hardly the end of the world to take 5mg more at that level!

[Missus835 in reply to PMRpro]

Thanks Pro. Our thoughts exactly. Cheers ladies!

[Missus835]

Always more than one way to skin a cat (skint many) ..and I am one who reacts to even a .5 reduction so there we go. 2.5 sounds even better than 5. LOL.