GCA and sore lumpy tongue

[Happyexplorer]

I've managed to get to 5.5mg with the help of Actemra over the last 16 months, not as fast my my Rheumy would like but she accepts some folk are slower. Getting below 10 has been very slow going with jaw stiffness, facial/eye pain and cramps recurring and after sticking it out for 2 or 3 days I go back to the previous dose and all is well. (My PMR has resurfaced as I've lowered the dose but I can cope with that as it's in hips only with manageable pain and I want to concentrate on the GCA meds...so nice to have my face a more normal shape with the lower dose, despite the reappearance of the wrinkles!)

I tried 5mg 3 days ago, seemed to be Ok but have developed a very sore, swollen red tongue, along both sides. No other GCA symtom breakthrough, but I did have the tongue inflammation way back at the start, just before GCA was diagnosed and then the jaw stiffness. My question is, should I persevere with the 5mg or increase the dose again? Does anyone else get this tongue issue?

(No change in my diet or vit intake and I have a pretty good diet, weight only fluctuates up and down 2 kg from the start of treatment, following suggested diets on this very helpful site!)

Many thanks for your advice!

[SheffieldJane]

A sore swollen tongue seems to be a key GCA symptom. See the threads on your right. I would be worried about getting too low. Your disease seems to be pretty lively. Look at the tapering section of FAQs on here. The body responds to a gentle approach.

[Happyexplorer in reply to SheffieldJane]

Thanks so much for the reply, as soon as I posted I saw related articles and realised I should have searched before going to print. Sorry about that! I'll up the dose as suggested, just hate going backwards but am probably too anxious to get to the end of this debilitating journey! Thanks again and Merry Christmas....hot and steamy down here in Aus as you probably know!

🙏🤗🎄

[SheffieldJane in reply to Happyexplorer]

I know the feeling of wanted desperately to ditch the drugs, but it’s not a job to be hurried. You end up back where you started or worse. I would be inclined to return to 10 mgs and stay there for a few weeks, when everything settles, get a pill cutter and do tiny drops of half a mg every 4 weeks. In my experience this sticks.

I was in Australia for 6 weeks over October and November - it rained nearly every day mate! Some steamy heat would be great right now, we have , snow, ice and freezing fog. I felt much better in NSW admittedly and long to return to my loved ones and the sea air.

[PMRpro Ambassador in reply to SheffieldJane]

You do have the option don't you? Given the state of the UK currently you'd have to hold me back! That's why I'm staying here! Even with -17C which we had yesterday morning 😱 A cosy -7C this morning ...

[Happyexplorer in reply to SheffieldJane]

Thanks for this Sheffield Jane, sorry we provided such shocking weather for you! Your idea of going back up to 10mg and gentle taper sounds a good one. Have been a bit fixated on the end point...very silly as you say....sometimes this wretched disease seems endless and comes at a time when our remaining active years are so precious!

Thanks again for your reply and Merry Christmas 🎅 🎄

[SnazzyD]

Hello, I think we all understand the disappointment and wanting to get rid of all this! I found the only way was to stop focusing on an end point because although that can feel awful in itself it stops the boom and bust of hope which I’d say is debatably worse. That can be hard when one’s clinicians also have a high expectation of an early release.

Actemra only deals with one type of inflammatory mediator Interleukin-6. Pred, for all its faults, covers more bases which is why it is so effective. Although IL6 is thought to be the main player in GCA it isn’t always the only one trying to share the top spot. If this is the case the Acemtra will be partially effective and won’t allow you to reduce as fast as the doc would like, which yours has at least noted. Some docs think it is the answer and others and like some research, accept that not everyone is helped as well as others. I hope your doc will see that you need to go up a bit and slow down, especially as you did find relief in doing so.

Your PMR has returned and you feel you can cope but it is indicative of rising inflammation however you regard it; it’s a signal writ large. I’m not sure what you mean by wanting to “concentrate on the GCA meds” and what it entails to your mind. Given that your tongue was a feature at the outset and with your other pains, I’d say you have hit the lowest level you can go for now and possibly need to be put into flare management mode. I think you do need to tell your doctor before Christmas.

[Happyexplorer in reply to SnazzyD]

Thanks so much for this very helpful and logical reply Snazzy! I will email my Rheumy but also increase the dose to get rid of new symptoms...I think I lost the plot there a bit in my 'rush to the finish'.....probably set myself back a bit, Christmas always an extra stress🤣🤷🏻‍♀️.It's so heartening to feel I have a friendly ear on this site... ..felt a bit self indulgent posting, but the kind and wise replies are so reassuring!

🙏🙏🙏🎄🎄🥂

[SnazzyD in reply to Happyexplorer]

oh we’ve all been there!

[PMRpro Ambassador in reply to Happyexplorer]

Why self-indulgent? It's why we are here ...

[Happyexplorer in reply to PMRpro]

You are so appreciated too!!🤗🙏🙏😷😇

[PMRpro Ambassador]

Bear in mind that Actemra only works 100% for half of patients - there are at least 3 mechanisms for GCA inflammation and Actemra only works for ONE of them. If the other two are involved - you need pred. about 8mg is a common level to get stuck.

And PMR can be equally as much a symptom of GCA as anything else.

[Happyexplorer in reply to PMRpro]

Thanks for this PMR Pro, I hadnt considered PMR as part of GCA, was thinking it as separate and that I could ignore it if I could cope with the pain! I got that impression from my rheumy last week when she was encouraging me to speed up my tapering.....will definitely up my dose of pred and go back to a slower taper. Will be a relief actually, I seem to be weeping constantly for no good reason as life is fine, just a bit busy and it's hard to claim one is feeling poorly and fatigued when one looks perfectly normal, except for the fat face and the bruises!Sorry to sound so complaining, I know I am luckier than so many others and really appreciate the good advice!

Thanks so much🤗🎄🌈

[PMRpro Ambassador in reply to Happyexplorer]

Even if it were "just" PMR the rheumy is wrong - go to too low a dose to manage the inflammation and it builds up until you can't move. And absolutely DON'T speed up the taper. The lower, the slower. Even with Actemra because Actemra doesn't replace adrenal function, just hopefully allows you to maintain the lower doses needed to encourage the adrenals to produce cortisol. Adrenal insufficiency probably underlies the tearfulness. And what does "bit busy" mean?

[Happyexplorer in reply to PMRpro]

That's interesting and really makes sense. I hadn't connected the teary thing with adrenals and it's good to have a reason, I will get back on the straight and narrow from now on. A 'bit busy' means just with end of year stuff, nothing very important but trying to do more in the day to meet expectations than feels comfortable, still, am off to bed now, feeling alot more cheery than I did before sharing my grizzles!

Thanks again😀

[SnazzyD in reply to Happyexplorer]

well, put that stick away and stop beating yourself up because there are others worse than you! It rarely works for a start. Looking normal is one of the curses of these conditions and one has to stick up for oneself with others who also want you to be normal, self care, dare I say it. Most of us haven’t got many gold stars in that area in the past! It that regard there certainly wouldn’t be any shred of self care in going through Christmas with a dose of Pred (below 8mg) when your adrenal glands aren’t coping. The result is having nothing in the tank, feeling weepy and overwhelmed and vaguely ill. In addition you have the physical stress of having inflammation that is rising so it’s not surprising you are hitting the buffers. To get through this bit I was dropping by 0.5mg, slowly adding on the new dose over anything from 6-14 weeks; the lower I got the slower I got. I also had to slow right down in myself to avoid overreaching my adrenal glands’ capacity. I was a bit extreme perhaps but I had to. Do read about all things adrenal in the FAQ’s to avoid the risk of walking into adrenal crisis which is serious.

[Happyexplorer in reply to SnazzyD]

That all certainly makes sense...many thanks Snazzy!