TAPERING DOWN FROM 60MG TO 14 MG OVER THE LAST 5 MONTHS. I AM A NEW MEMBER.

[calicojoy41]

HAS ANYONE HAD LOSS OF SMELL AND TASTE ON AND OFF? ALSO SWOLLEN LOWER LEG AND FOOT?

[SheffieldJane]

My first thought would be Covid19 that has this as a significant symptom. Are you in the U.K. and able to phone 111 for advice.

The limb swelling maybe something to do with being more sedentary due to the Pandemic. I would get advice on the smell and taste first. Good luck!

[HeronNS]

I see you are in the US. Call whoever your local authority says and get tested for covid-19. As SheffieldJane says, loss of taste and smell is one of the significant symptoms of Covid - even possibly the gradual loss you are describing:

medicalxpress.com/news/2020...

So you are certainly eligible for a test. Until you know for sure, you shouldn't go out into public, certainly not without wearing a mask.

Call your doctor about the swollen limb. It is not a symptom of PMR/GCA, but in some cases prednisone can cause salt retention which may cause swelling. But if it's just one leg I don't know.

[calicojoy41 in reply to HeronNS]

Thank you, I am 79 and wear my mask whenever I leave the house. Thank goodness I still have a lot of energy (a manic gardener). I now have a vascular surgeon testing me with ultrasound and cat scan trying to figuring out my leg problem , I think the PREDNISONE is the problem it has triggered something.....I just wanted to see if anyone else has had these problems

[HeronNS in reply to calicojoy41]

Well that's good you are getting medical care. Do let us know how you get on and what you find out.

[tangocharlie in reply to HeronNS]

I get swollen legs feet and ankles and the swelling goes away on higher doses of steroids, so it may well be connected to PMR, my rheumatologist is investigating in case it is LVV (large Vessel Vasculitis) which is somewhere between PMR and GCA on the spectrum.As you have had GCA it could be to do with that.

[HeronNS in reply to tangocharlie]

You meant to reply to calicojoy41 I think.

[tangocharlie in reply to HeronNS]

Yes thanks but also to say it can be a symptom of PMR I think, I'm not the only one to mention it. Hopefully my rheumy wil get to the bottom of it as it is something Pred sorts out.

[calicojoy41 in reply to tangocharlie]

thank you!!!

[Pollyanna16]

2 friends have experienced loss of taste & smell & had Covid, thankfully fairly mildly. One had a blood test a few days ago & has the antibodies so Covid confirmed & she was ill 2 months ago. I would strongly agree with the others to get tested so that you can take appropriate precautions x

[PMRpro Ambassador]

Loss of the sense of taste or smell at present certainly conjures up a question about Covid-19. However, in theory it could also be caused by GCA (which I assume was your diagnosis since you started at 60mg pred) but it would be unusual.

What symptoms did you have originally? Was the leg swelling one of them? Is it both legs that are involved?

[calicojoy41 in reply to PMRpro]

one leg..thank goodness ..it has always been a small problem in the summer but now is a BIG PROBLEM! thank you!!

[PMRpro Ambassador in reply to calicojoy41]

That is a likely rule-out for PMR which is mostly bilateral. Have no doctors ever looked into it?

[jinasc]

As PMRpro has said, "in theory it could also be caused by GCA".

2 people that both PMRpor and I know, both with GCA lost both taste and sense of smell'.

It did come back slowly and after a bit of time.

However, still get it checked for Covid - just in case.

[calicojoy41 in reply to jinasc]

Thank you this made me feel better as my doctor has never responded to my comments about loss of taste and smell!!!

[LIVEORDIEHEREIAM in reply to calicojoy41]

calicojoy41, I would find a new doctor. Loss of taste and smell should have had him/her sitting up straight and sending you immediately for testing! "...as my doctor has never responded to my comments about loss of taste and smell!!!" deserves triple exclamation points!

Best of luck!

[jarn]

Hello. Are you only on Prednisone? I started on TCZ in February when I was on 17mg Pred and when I got to 0 in July, stopped the Pred and only injecting with TCZ. About a month or so later, did notice swelling of both toes/ankles/fingers and after no results in tests, just watched it and eventually subsided. So thinking it is the TCZ effects. However, in October before I was diagnosed with GCA, had lost sense of TASTE only. Still have that but it is subsiding. No other symptoms of COVID but will talk to doctor about being tested. There was no pandemic until March etc. so not sure. As for the taste, only spicier foods seem to be acceptable: breads/starches taste like sawdust. If you get some answers, advise again and good luck.

[PMRpro Ambassador in reply to jarn]

I suppose it is perfectly possible in GCA that the same can happen to the nerves concerned with taste as happens to the optic nerve - and that may be what happens in Covid too, the virus causes a vasculitis that affects those nerves. It will be very interesting what they turn up - Covid seems to be awakening interest where no interest existed before!

[jarn in reply to PMRpro]

You just know your stuff & make too much sense, which I am grateful for. Also interesting that TCZ being administered to Covid patients.

[calicojoy41]

What is TCZ? I am laying low now on 13mg of pred a day. doing my gardening and housework grocery shopping and trying to pace myself.

[PMRpro Ambassador in reply to calicojoy41]

Tocilizumab - a biologic drug used for RA and now approved for GCA.

[calicojoy41 in reply to PMRpro]

Thank you so much!

[mgrogers99 in reply to PMRpro]

And in the US after adequate documentation and some labs.