New to GCA

Posted , 8 users are following.

Hi

I was diagnosed with GLA in Nov 2019 and put on 60mg of Prednisone for 2 weeks then slowly lowering the dose, unfortunately when i got to 35mg per day my inflammation markers increased so i'm on 40mg a day till next hosp appt, Jan 2020. Anyway i noticed mt sense of smell has totally vanished, although i still have some sense of taste. Has anyone else experienced this, and can it come back? the sense of smell and taste, once my steroids are, hopefully lowered.

0 likes, 5 replies

5 Replies

  • Posted

    Yes. My experience with prednisone spans years, and when I have been off of it, smell and taste have returned.

    Like you, both smell and taste are very compromised right now. I taste salt, sweet, bitter, but not much flavor to anything.

    Be careful if you can't smell.

    I burned a dish on the stove, was in another room ( it was simmering very low).. smoke filled the rooms and I had to see it ...never smelled it .

    That was a game changer day, am more careful, now!!

    Hope this helps. MariGrace

  • Posted

    Everyone reacts differently. My taste is poor now and I can only taste strong foods but smell is OK.

  • Posted

    I too was diagnosed in late 2019 with GCA and started at 60mg prednisone. I've been gradually tapering, now down to 10mg. As to the sense of smell, my experience is totally opposite to yours. I smell all sorts of aromas that no one else can, fortunately all quite acceptable! I smell enticing stews and curries, intensely sweet flowers, and all sorts that are unidentifiable. My taste buds are all askew though, with a constant slightly bitter astringent sensation, especially when I am tired. THE ONLY welcome side effect though is my hair has gone quite wavey, an improvement my hairdresser has been able to enhance with clever cutting.

    It's such an unpredictable, mixed bag, isn't it?

    • Posted

      Wow the different experiences. Thank you for sharing, it helps to know everyone reactions vary. I too get a bitter taste most of the time, just hope its temporary but we will have to see. Have a god 2020 everyone and a restful Christmas. If anything new happens i will post here. X

    • Posted

      That is amazing! Early on, I would have 'puffs of smoke' to smell. Haven't had that for a while.

      Methatrexate took my hair, then it came back red (again) - it had grayed - I an 72. It was curly and fun. After a year off of it, I'm back to normal - hair a little different, but more normal.

      Yes. Our experiences are certainly diverse! My medications are varied for other issues. It's hard to know what is 'disease' and where the side effects cause mayhem. MariGrace - nearing 3 years of PMR- and GCA symptoms cropped up about a year ago.

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.