GCA flare, tongue claudication

[crafty_grannie]

I have had a flare of GCE over the last few weeks. GP put me back to 50mg for a week, then reduced it to 37.5. Last blood test, CRP was under 5 again (from 67 last test), so rheumatologist reduced dose to 25mg, but I now have tongue claudication and pain across lower hips, bottom. This time it is right to the tip of my tongue. Don't remember that from last time. Has anyone else experienced this. Many thanks. Mary.

[Dontwannabesick]

I'm no expert but it sounds as if you're tapering far too quickly. If the claudication has returned you are not taking enough pred to control the inflammation. I'd go back up to the dose you were on at the point you were symptom free and speak to your GP and Rheumy about a slower taper.

[crafty_grannie in reply to Dontwannabesick]

Thanks, I'll ring my rheumy tomorrow. The claudication is getting worse and I concerned about my sight.

[Rimmy in reply to crafty_grannie]

Yes the claudication is something to be concerned about - and I'm sure you'd know if you get any eyesight probs go straight to the ER - agree with others the taper is too much too soon - especially in these circumstances and CRP levels are not always indicative (enough).

All the best

[crafty_grannie in reply to Rimmy]

Thanks Rimmy. Interesting that doctor's recommendations for dosage reflects the inflammation results, not the symptoms. I've had difficulty identifying the differing symptoms for fibromyalgia, PMR and GCA, but I've now made notes and am finding it easier to identify. This will help me talk to my GP and Rheumy. He was actually the one who slowed down my original tapering when my ophthalmologist was recommending bigger reductions. I feel as if I'm slowly getting a much clearer picture so I feel more confident asking for what I want/need. This forum is so helpful to clarify things. Thanks everyone.

[DorsetLady PMRGCAuk volunteer]

Hi,

Stick with your GP - he seems to have a better idea than Rheumy. When you reduced back to 37.5mg you should have stayed there. Don’t know what your Rheumy was thinking!

[crafty_grannie in reply to DorsetLady]

Yes, it does seem much too fast now. Thanks also for your information for new patients, DorsetLady. It is very helpful. Well, back up again and see how I go. Thanks.

[PMRpro Ambassador]

Why on earth are they reducing the dose so quickly and in such big leaps? If it were me I wouldn't wait for permission - I'd up the dose to at least 30mg and more if that doesn't work.

[crafty_grannie in reply to PMRpro]

Thanks PMRpro, I'll increase it tonight and check later..... and if they don't agree I'll go on my symptoms reduction to decide. Thanks for the advice. I feel much better hearing from people who actually have experienced the journey over time.

[Polywotsit PMRGCAuk team member]

Sounds to me also as though you might be one of those people who don't respond very well to steroids - a possible candidate for Actemra? This might be a good reason to stick with the rheumatologist at least for now - there might be some chance of alternatives or adjuncts to steroids for you. Do keep a diary of your symptoms and don't be afraid to go to A and E if you have any disturbances in your vision.

[crafty_grannie in reply to Polywotsit]

Thanks Kate. I have only just started a diary of symptoms and it has helped. I’m more able to identify the differences between fibromyalgia, PMR and GCR which is very helpful. My Rheumy is really good and I can ring him anytime. And he is happy for me to increase my Pred till my symptoms are under control.