Hello. I am 68 and have had PMR for four and a half years - 4th jab back in February.
Having been super careful for a couple of years, I went to a friend’s funeral a few days ago - about 100 people all singing, without masks, in church. A few days later woke up with the worst sore throat I had ever had. Did two LF tests and they confirmed negative. Sent off PCR test. NHS did call in phone next day to discuss alternative treatments but (1) I have been on a low dose of Pred (below 5mg) for four months now - when theoretically your own adrenals start working again - and (2) they consider that I do not have anything else wrong with me serious enough for the alternative treatments.
After five days, I still ache - the amount of this varies during the day - (improving gradually though). I still have the very sore throat; a dry cough and I must have blown my nose hundreds of times. I just feel so weak.
Is it worth upping my Pred for a week by, say 5mg, just to help the extra aches? I have been taking Ibuprofen twice a day to help and am aware of a previous post on Ibuprofen affecting stomachs. I do take Omiprazole (10mg once a day). At the moment my Pred is half gastro coated (1x2.5mg tabs) and half none coated (2x1mg) a day.
Do I just ‘sit this one out’ and carry on with Pred as normal? After all, Things are beginning to ease slowly after five days but I still feel very ill. My partner has, so far, not tested positive. 🙂
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MaritimeMags
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I would say, for me personally at least, I wouldn’t unless you feel you are losing the battle or were already struggling with low adrenal symptoms while doing very little before you were ill. Others and some docs would say to abide by sick day rules (see FAQ’s) regardless . By losing the battle I don’t just mean feeling fluey but getting worse with the symptoms of adrenal insufficiency. I wouldn’t take it for just fluey aches, just to make myself feel better; aches are a big feature of Covid for many. Covid is still a hefty virus even though it’s said to be mild compared to the Delta variant. Friends, family and myself this year have had two weeks of feeling pretty rubbish with Omicron. Pre-Covid we all used to accept a decent viral illness could make us feel pretty rotten for a week or two and then lay us low for a month. Even an average virus is 7-10 days so I’m not in the least bit surprised you feel ill after 5 days. Sore throats can end up making one feel disproportionately worse because of coughing and sleepless nights that kick in when one feels one ought to be getting better. I think I’d be using Paracetamol and not Ibuprofen be of the gastric effects and I would also not be be trying to stop all signs of fever; it’s useful for the immune system to deal with this effectively.
As PMRPro says, you are improving albeit not at the speed you’d like. This one does grumble. Adrenal function seems to return in fits and starts and just because a test is ok one day doesn’t mean to say it’s 100% all the time. I had a cortisol test at 4mg because the Endo said 5mg can be still a bit high for the adrenals to realise they need to work. I stopped Pred Aug 2020 and still had occasions when I felt my system couldn’t cope and had to take 1-2mg. It’s annoyingly inexact.
Tough luck! But my daughter, frontline A&E staff, escaped it until her husband went to a stag night recently and brought it back. Now she's at a hen do in Dublin this week - hope she still has enough immunity left!
"I have been on a low dose of Pred (below 5mg) for four months now - when theoretically your own adrenals start working again"
Well someone needs to do their homework - it takes up to a year after stopping pred entirely for adrenal function to be reliably back to normal - and at 4mg there is still considerable adrenal suppression.
However - I wouldn't up the pred now if you are already starting to feel better but if you feel worse again or get PMR symptoms of a flare then I would consider discussing it with the GP. My daughter - relatively young and healthy felt pretty rubbish for over a week. Cousins my age caught it when here skiing - the wife felt fine all through, the husband still felt unwell and very tired after nearly 2 weeks, Both are very fit and have never been on pred.
Thank you for this PMRpro. I think I will just carry on with normal dose of Pred. I did ask GP about testing adrenals but she said they could not do this until I was completely off Pred. 🙂
She is actually talking rubbish - as so often. They CAN test to see what adrenal function is doing and it is safer to do it while the patient is on some pred. There is no point at all doing it above 5mg and many endocrinologists won't do a synacthen test until the patient is down to 3mg but just a basal cortisol level can be informative. Some patients have quite reasonable cortisol levels long before they are able to stop pred and if you know that, you can stop worrying quite as much. Some patients also have reasonable responses to the synacthen test before stopping pred altogether. But if the pred dose is fairly low, 3mg and less, and the basal cortisol level is under 100, you know to be careful. If it is moderate, 100-350, you know that there is some function returning, the higher the number is, the more there is, and a few have normal levels.
Snazzy and SheffieldJane were tested - at 5mg, nothing, at 3mg slightly better and OK at 1.5mg. You cannot blanket say "you can't ...".
Thanks, again, PMRpro. This is very useful. I was sure I was right in asking but new GP was most insistent on phone about no test until I am off Pred. She said “You obviously want to ask questions - I’ll stop talking now” in a very rude way. She is new to the surgery. I will always avoid her now if I can.
So we aren't allowed to ask questions now? How rude - and really rather a risky practice if the patient has the wrong end of the stick. Complaint time ... They may have a hard life but that isn't the way to improve anything,
The first Rheumi e I saw 10 years ago was the same, she said listen to me and you will be off steroids in 2 years!....when I went to ask a question she said ...no questions just follow the plan I have given you....
My sister with R A had to see her a couple of years after me, I had warned her, she was exactly the same, this is what I dearly want to see changed in the future.....arrogant Rheumie s stopped in their trac ks....they are dealing with ill, worried people...
One of my GPs has a mug on her desk which reads 'please do not confuse what I tell you with what you read in the paper'. One of her children bought it for her for Christmas one year. Although she doesn't seem to mind questions per se, she does if it's questioning the correctness of the treatment she is giving you. The worst thing is being 'rushed' through the appointment.
Oh my goodness the arrogance...it`s our bodies, our pain....I wonder if with training they are told they are "special!" my late MIL thought they were gods, but thankfully those days are gone.....her doctor was a heavy smoker, was so overweight he couldn`t get up from the floor when he had to examine her!.....people laugh about him now,. Things have changed so much with the health service...I haven`t seen my GP for a long time, but she was always ready to listen and answer any questions, very down to earth, no arrogance. Luckily so does my Rheumie who I often bang on about!
It used to be a "thing" amongst my medic friends in Scotland to read the Sunday Post medical advice article - because that was likely to be the thing they were being asked about on Monday morning!
I think the GP thought she could get away with a quick phone call to give my blood results and didn’t want to discuss my PMR - which is why the bloods were done in the first place! She had not even looked at a letter I had sent two weeks before suggesting a full set of bloods and enquiring whether there was some sort of test for adrenals
I would imagine that you have a G.P. lacking in experience or knowledge, or both. Not unusual from what I read on here.I have just had a cortisol test,the condition was that I should be on 5mg/day for four weeks but I think the four week bit might be specific to my rheumy who has a regimental sergeant major approach with patients.
Hope you get to feel better pretty soon. Who would believe that we could visit a surgery hoping beyond hope that we don't end up seeing a particular G.P.
During the last three years I have lost count of the times I have felt the same way.
After 4 jabs and on 4 mg pred I also caught covid. Same symptoms as yourself. I was positive for 2 weeks and had the cough and cold forabout a month. I was tempted to increase pred as my pmr was worse but glad I didn't as each day my symptoms slowly lessened and now on 3.5 mg and hoping my adrenals are waiting in the wings. It just takes time to lose those covid cough and cold. Wish you well.
Oh dear that is disappointing to hear this. I had my 4th Jab a week ago and in June flying to a granddaughters wedding with over 100 guests. I'm nearly on 8.5 mg full-time and staying on it until I get back. I'm 80 in July so a tad worried. Thought this jab would protect me.
It does protect you from developing severe illness - no vaccine can protect you 100% from catching anything though. If you are concerned you need the non-pharmaceutical protective measures too - like masks and distancing and hand washing which all reduce the risk but nothing can eliminate it altogether.
I’m sorry for your loss. With regards to you being careful and covid finally catching up with you, I was the same I escaped it up until the beginning of this year. I myself was extremely poorly with it and was unable to have the alternative medication as they said being on long term steroids that I didn’t qualify. I tested positive for 23 days and suffered with long covid ever since. I did call my gp and explain that my whole body hurt, I found it really hard to move and all I wanted to do was sleep and she did increase my steroids. Instead of increasing your steroids yourself I would suggest calling your gp and explaining how covid is affecting you and they will probably increase them more than 5mg to help you while you recover and get over the affects of covid. I wish you a speedy recovery and hope it doesn’t impact your PMR for too long. Xxxx
Have a look at the sick day rules in FAQs. We should all follow this procedure when ill like you are. Run it past your doctor but I think it is definitely the way forward. We need the extra cortisol when fighting illness and are unable to provide it ourselves like healthy individuals.
Your symptoms sound just like I had a few weeks ago. They gave me Paxlovid which I took for five days. I didn’t raise my prednisone. Now they say you can have a rebound of Covid after taking Paxlovid. Not sure if it was worth it so we will see. Rest up and give your self sometime.
Thanks. Nice to know. I was working until recently so never slept during the day. However, with Covid, I am now having to take naps - so tired all the time.
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