GCA and sense of smell

[Rjw2014]

Since dropping to 10 mg this week I have had a strange phantom smell like something smouldering. Should I be worried do you think? I am also getting periods of sharp pain in the side of my head again.

[PMRpro Ambassador]

If it is GCA you were diagnosed with originally - do check with your doctor asap. And mention the burning smell to them. Mostly phantosmia is not serious, but it can be and you have the stabbing pains as well.

[Asbeck]

RJW2014 and PMRpro: I love this site. PMRpro please think about the below described sensation of heat in the arteries of my right arm.) I too have had this "smell" sensation described by RJW2014. It's as if I've walked close to an area which is burning and my nostrils are dry and "smell" the sort of dry acridness of smoke. I already have been diagnosed with GCA (and PMR). So if you have not been diagnosed with GCA, notice that I have been, and this is one of my symptoms (and be careful of your eyes--watch your jaw and tongue for additional symptoms in arteries worry some to the eyes.). I expect weirdness with GCA. If I never accept even the tiniest symptom I would be on maybe 15-20 mg of Pred. I started 60 mg of Pred in late Oct., 2013. My periods of sharp pain are pretty much every day and are in the side of the head, or from the sides of the nose, through the eye and up the side of the forehead into the scalp. However, they happen for a short period of time--maybe one to three periods of time a day, and each individual episode is of short duration. I have had this "smoke sensation" for more than 2 months. I just accepted it. Thank you. Now that you have highlighted it, I will discuss it with my Rheumy when I see her in June. (My nose is always uncomfortable in the sinuses between my eyes and in the arteries on the sides of the nose. The ENT says that this is the GCA.) In the last 4 months I've increased Pred from 7.5 to 7.75 for about 2 weeks and then to 8 for about 4 weeks mostly on account of a weird heat sensation in the arteries of my right arm. (Rheumy thinks that this is a nerve and not an artery.) Therefore, I am reducing back to 7.75 on PMRpro's slow method. Today I started the one day of low to be followed by 4 days of high. This set of days and the next are often deal breakers for me, and I can't continue. (Tried slow reduction for 3/4 of a mg in December and for some reason wound up in the hospital. Hence the ridiculously slow dosage reduction.) Interestingly for the last couple of weeks the smoke sensation is not as bad as it has been in the past 2 months. But I'm home from a 3 week vacation and can put sterilized salt water up my nose. I hope that my story validates RJW2014's symptom. And thank you PMRpro for the word, "phantosmia."