Have lost sense of taste: taste buds changing. Sense of smell is good

[jarn]

Pre-GCA diagnosis, lost sense of taste and therefore, eating became rather sickening. Shed 25pounds in the process. Is this a side effect of PMR? Currently everything tastes acidic/ starches are like sawdust.

Also, my body doesn't seem to warm up: always chilly.

[HeronNS]

Interesting, This is how I felt for a day or two after I had a recent accident and minor but incapacitating injury. I was actually really hungry but when I tried to eat it was indeed like the food turned to sawdust in my mouth. I think I was suffering a certain level of adrenal insufficiency as at the time my pred dose was something like a half mg and I suppose my body couldn't manufacture enough cortisol to deal with the additional stress. Fortunately no ill came of this and I did bounce back fairly quickly.

Have you told your doctor? There could be some imbalance or insufficiency similar to what I experienced although obviously not the same as it's been going on since you started pred.

[jarn in reply to HeronNS]

Yes, told both doctors and just a shrug.......... it is crazy because psychologically I can taste certain favourite foods, but when I try to get it down, no go. Some days seem to abate, so thinking "oh, maybe finally changing". Then next day, back to sawdust!!

[piglette]

Loss of taste can be a symptom of Covid-19.

[jarn in reply to piglette]

But I experienced this half a year before COVID. My son mentioned the same thing. Guess will just have to carry on.

[piglette in reply to jarn]

Sorry, I did not read your comments properly or my mind is going.

[PMRpro Ambassador]

More likely to be GCA than PMR - GCA affects the cranial nerves. It is not common but does appear in the literature:

academic.oup.com/rheumap/ar...

They wonder if it is rare or merely underdiagnosed - I'd surmise the latter.

[jarn in reply to PMRpro]

That was interesting and thank you. The taste thing happened before I had GCA but perhaps it was lurking? PMR and jaw claudication were present at the onset. It does seem that I can handle spicey and salty. Guess we just keep plugging along. Tx for the info

[jinasc]

I do know three people with GCA who lost their taste, it did come back, but what one of them did was to find he could eat 'spicy foods' and enjoy them better than before he lost his taste and it did come back.

Like PMRPro, I surmise the latter 'under diagnosed'

Seems to me some research is called for. Anyone willing to take it on by asking the question on here?

[jarn]

\Well, thats encouraging as I said that my team of doctors were unaware. My body also feeling rather cool, which is unusual for me as usually too warm. So am thinking there are many things occurring to our bodies. At least we're still hobbling along! Appreciate your response.

[Miserypants]

When I was in hospital being diagnosed with PMR and GCA I kept complaining about the amount of salt they put in the food!

[jarn in reply to Miserypants]

Well, I seem to need MORE seasoning, including salt, in my food in order to taste it

[Amkoffee]

These are signs of covid-19. I suggest you talk to your doctor

[jarn]

Hmmmm. Well, these symptoms started in November, months before COVID 19. However will ask both doctors about that

[calicojoy41]

I have loss of smell and taste since being diagnosed with PMR and starting pred. Some days are a little better now, a strange way to lose weight I don't like it!!

[jarn]

HaHa........couldn't agree more but some days, seems to improve; before being diagnosed GCA, had already shed 25lbs. Have recouped about 2of them. Thank you for acknowledging as nobody I spoke with, had ever heard of that. Strangely, spicey foods settle easier so good thing I like Indian food.

[Ronswife]

I lost at least 10 lbs and couldn't eat as everything tasted horrible. Finally I could eat chocolate cake and root beer. I did not have a diagnosis at the time as Ra s in the USA were 3 months out and The local mds were lacking. Maybe 12 months passed before my taste buds normalized. The diagnosis was PMR. I wish they had seen me at the worst.

[jarn in reply to Ronswife]

Wow. Encouraging if I only have 5more mos of sawdust to eat! Wondered if it would return. Taste that is. One week taste is bitter....next sweet. Every day is a journey. Tx for responding

[Carriemetz]

How I wish I’d lost any weight at all! Was not obese before diagnosis of GCA in March 2019, tho no sylph, but prednisolone piled on the pounds! So I wouldn’t worry abt weight loss - I suspect it’ll soon go the other way unless you’re v careful re carbs! Good luck. Carrie

[jarn in reply to Carriemetz]

Don't mind the weight loss, but not how I got there. Have added a couple of pounds now but with the lack of appetite, hoping to remain steady. Am sure it was the HIGH dose of Pred that enabled and hoping that I never return to that peak again. Tks for encouragement