Is it long Covid

[Cobnut]

It's been a while since I last posted and probably seven years since I first did. I was diagnosed with GCA when I was 73 and I'm now 81. After the biopsy confirmed GCA I was put into the care of the kidney doctors at my local hospital as the GCA had affected my kidneys. Until this year I had six monthly blood tests and the occasional hospital clinic appointment and I was put on Mycrophenolate as well as prednisolone. I had many flares but the last one was when my GP during Covid put my steroids up from 6mg to 15mg as I had head and jaw pain. After scans etc it was decided the cause was neuropathic and I began the long withdrawal back to 6mg. After Christmas during a phone consultation I was discharged from Nephrolgy and told to ask for a referral to a rheumatologist. I met this gentleman last month and found him to be a very nice understanding man. He said that I am now steroid dependent and should stay at 6mg (or 5) for the rest of my life as it also helps with the pain I have from osteo arthritis, spondylitis and osteoporosis. I should mention that along the way I also collected diabetes and glaucoma. I have had two Zoledronate infusions and am about to have a third. My cataracts have also been attended to. After all that my question is this. Just before Easter both my husband and I caught Covid. This has affected us both quite badly and due to Easter I did not tell the NHS for three days and was unable to have the infusion for people like me as it was too late. It is almost four weeks now and the fatigue is dreadful. I always found it necessary to have a nap in the afternoon anyhow but now I could sleep all day. I think having a chest infection from November to March didn't help. The NHS were excellent. The doctor phoned me every day for four days and sent me a free oxygen reader. Has anyone else suffered from this ongoing Covid problem? I shall be worried about going out next winter. Apologies for the length of this but it puts me up to date.

[PMRpro Ambassador]

Long Covid is defined as the persistence of symptoms or development of new symptoms 3 months after the infection. It took my relatively young and healthy daughters a good month to recover from Covid when they had it - I think you are early days to wonder of you have Long Covid, you are still recovering. If you had had proper flu you would probably feel much the same.

How long had the GP had you at 15mg during Covid - which he was quite right in doing but not necessarily because of a suspected flare, you needed more pred for the Covid anyway.

[Cobnut in reply to PMRpro]

Thanks a lot for your speedy reply. I guess that as my younger family members all recovered quickly from Covid I expected to get over it more quickly too. I am too impatient to get back to life now spring is slowly happening and will slow down a little. Living with GCA is something I have struggled to come to terms with and when you factor in getting older it's even more difficult to accept. It's advice this forum often tells us to do. Thanks for listening

[PMRpro Ambassador in reply to Cobnut]

Always here to listen. And don't feel bad about taking your time getting over covid -lots of young people do too.

[Gossiplady]

hi Cobnut! I too had covid last October. Vile for 3 weeks. I didn’t flare probably because I upped my dosage. Since then I have no interest in food. No smell or taste. My doc agrees she has no idea how long this will last. Tiredness is dreadful. Wondered whether I should take caffeine drinks? Doc has told me to add dried milk powder to everything to prevent losing too much weight.

[Cobnut in reply to Gossiplady]

Thanks for your reply Gossiplady and I am so interested in the fact that you too feel tired and have lost sense of taste and smell. I'm here back on the sofa and all I've done is make the bed and wash the cat dishes. Did you have the feeling that your head was stuffed full of cotton wool and accompanying brain fog. If I go out shopping it tires me out the next day too. Let's hope that warm sunshine when it happens will help recovery. I'm booked for a Covid vaccination next week so I hope it doesn't make anything worse

[Gossiplady]

hi Cobnut! Yep! Yesterday went to the doc for repeat prescriptions . Wrong day, closed. Brain fog. They took one look at this poor old birdie and opened up the dispensary for me. Feeling brilliant decided to do a shop. Exhausted. Came home too tired to even bring the food in. Went to bed. Slept 6 hours. On and off sleeping until 11am today. What a life! No more vaccines for me , doctor told me at the start of this mess. Am down to 1.50 mgs, but brain fog and this tiredness plus lack of taste and smell continues. We will win in the end! My doc said at the beginning, “I promise you, I will get you better.” A big laugh this evening, “last of the summer wine” Cleggy said, “ centipedes have 100 legs and I don’t know how they organise them. I have two and they get entangled! “. Oh yes! Tin legs at their best.