No taste or smell

I had that too at the higher doses, the good news is that mine began to come back again as the dose reduced.  I can't remember exactly when, but I don't think it took long.

It's not a question of 'no life' either.  In all my years with this I can only remember being totally stymied once and that was right at the beginning of a 40mg dose.  It does get better as you reduce and the world swivels round again.

I worked for 8 years altogether with PMR and Pred (in varying doses) full time for 5 years and part time for 3.  I did have very supportive colleagues and management, nevertheless I not only did it, but I had far fewer days sick off than my 'well' colleagues.

It's all cliches really 'think positive' ' turn a negative into a positive' but I had to remind myself that cliches are cliches because (generally speaking) they are true.  Put that negative energy into finding something you can do and can enjoy doing and you are more than halfway there.

 

Hi Ann, ock sure you are having a time of it.  Don't lose heart, you will get better, not cured but better.  Any improvement no matter how small is an achievement.  I lost my smell about 25 years ago (don't know why, I think I had a bad flu)  The exhaustion and depression I can identify with, as I had ME/CFS for 14 years and then this PMR which is far worse.  I think I grieved for the person I used to be and wanted the old me back with no PMR, no pain, no tiredness, no confusion etc.,.  Every day you have is another day nearer to improving and there is light at the end of the tunnel and some tunnels are longer than others.  I can guarantee you that there is DEFINITELY Light at the end of the tunnel, Just hang on in there and use the forum as much as you can.  God Bless you.  Good luck on your journey.   Pat

My first strange side effect was the loss of taste.  Ordering my favorite foods seemed strange when I didn't have the usual taste sensations.  In part, as was pointed out to me, is the lack of smell, a strong part of your taste experience.  I am down to 17.5mgs now and I would say that I have maybe 20% of my taste back.  This goes along with a better, though not great, sense of smell.  I'ts taken me about 9 months for this change to occur so hang in there.

Hello Anne - don't give up - weird and "wonderful" things happen with your body while taking steroids - but ask yourself where you would be without them?

I am on my way to third year of living with steroids - also GCA - I never lost my sense of smell or taste - had the opposite problem - was permanently hungry and everything tasted great!

This might sound like a good thing but another side effect of steroids is weight gain!! So now I am watching my weight.

Before I was diagnosed with GCA I had a depression - at the time it wasn't connected to a symptom of anything so I was on anti depressants which helped me enormously.

I was still taking them at the time of my diagnosis and continued with them for a year, if you suffer badly with depression have a chat with your GP and ask about anti-depressants.

I have never been one for taking a lot of pills, the odd headache once in a while - and even though it takes some getting used to I am neither one who believes in suffering un-neccessarily - if you can get medication to help you through a hard time I would take it.

It will get better, and life isn't "no life" it might be a different life than the one you had - but your old life isn't gone for good - it is just waiting for you to get this stupid disease under control.

This website will help you enormously! I was so relieved when I found it - makes you realise that all the things that are happening aren't "just you".

Good luck

Ann, I was diagnosed with GCA at the end of 2014, after 5 years with PMR. Funnily enough, losing my sense of taste was one of the symptoms I had before being diagnosed.

I'm slowly learning to live with GCA, but it takes time to adjust to a different and slower pace. There certainly is life with GCA, but not the life you used to have. I've had to retire early from a job I loved, but am now beginning to enjoy having time for hobbies and relaxing.

Don't despair, it will get better. :-)

I forgot to say that I now have my sense of taste back (currently on 27.5mg Pred.

yep, I had this too. GCA diagnosed early jan 2015 and I'm just beginning to get my sense of smell back. taste buds are about 70% depending upon the day. I'm currently at 35mg pred, down from a high of 80.  Things taste very salty to me and I can taste sweet. So I can taste things, they're just wacky. Before everything tasted really wacky (like rice tasted like dish soap and most things tasted like cardboard). Since I'm on a mostly liquid diet due to a reflux problem from pred, I'm not suffering too much with the lack of taste. I figure it will all come back eventually (it better, lol!)  it does make it hard to cook for others, though. 

as someone else said, textures are a big thing. for some reason, probably because they're the only thing left, they've become a very big thing in my life. eat slowly and enjoy the feel of the food in your mouth. you'll notice things you didn't notice before-it's actually quite interesting.