When Lockdown started in March I didn’t come into any particular category being 62 and with no illness or condition to suggest I was vulnerable. (Just PMR symptoms but I wasn’t diagnosed until 6weeks ago when the rules started changing.)
So early in March my husband and I simply stopped going out and enjoyed being at home gardening cooking and reading. Once a week I drove him to the local town (more like a large village) where he shopped in splendid isolation. But we never paid close attention to specific rules and who fell into which vulnerable category. It’s now hard to work it out as rules have changed and there has been conflicting advice.
So my question to all of you is what category were the straight PMR people in and did you have particular lockdown rules/guidance? I want to be ready for a second wave etc.
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We still behave the same way we did at the beginning. Everything is delivered and then we have special shelves in the kitchen and inside the fridge for new items where they stay for 3 days. If I want to eat something earlier, I do, but I wash it with soap if necessary and take precautions. I don't go into any shops, but my husband does once per week. We don't see friends and family often as no one seems to understand what 2 meters look like and my husband is very worried about infecting other people (he is an NHS doctor). I have visited a couple of elderly friends in their gardens and met people in parks, while keeping a safe distance. I being my own tea and water. We never eat out or order any takeaways. I have gotten into a daily routine of washing my glasses every morning, cleaning my phone with alcohol gel, wiping the front door ironmongery with anti-viral wipes. I change my clothes after I open Amazon boxes or return home from an outing. We avoid benches and use logs to rest or have lunch when we go to our local parks. We have not booked any holidays and just have excursions close to London. But we are lucky; we have space and a small but lovely garden and a child which is a bit of a home body.
I think I know what the rules are, but for them to work everyone needs to know them too. And neither the press, nor the government are helping us understand them.
I am only on Prednisolone with no comorbidities and I was considered higher risk, but not shielding. I was on 9mg when it started. I am now tapering to 5.5mg, so my risk is a lot smaller.
There is a document which sets it out clearly, I am sure you can find a lik to it in the Covid posts.
PMR was said to put you at increased risk (as a vasculitis). Then it depended on other conditions you might have such as high BP or diabetes. Having been on pred for any length of time also had a bearing, especially at the higher doses because of the risk to adrenal function - less so than the risk of catching it in the first place.
Here in Italy the instructions were different - over 65s in general were to stay at home as much as possible, only going out to shop or for medical needs. If you needed to see the GP you made an appointment, here we usually just turn up and wait like the old days in the UK! But EVERYONE was under the same instructions and at the peak we had to remain within 200-400m of our front door. We were only allowed to go to the nearest supermarket and if you tried to go further away you could be fined if stopped by the police - we had to carry a declaration with us saying why were out in the car. So I went out shopping the entire time - would have starved otherwise, no online shopping here at all. We have to wear a mask and 90% of Italians do so, hand sanitiser is at every door.
The increased knowledge about Covid-19 and corticosteroids may well mean that PMR patients are felt to be as safe as anyone else. So what they said 3 months ago may not apply now. Not that I get the impression that anyone in Westminster has the slightest idea about what they should be doing. My husband just said how glad he is we are here!!!!
A local politician here went to Venice for his holiday - on a boat got a mention, no more details. He came home with symptoms and was tested positive on 10th July. His second test was also positive so another 7 days isolation - and so was his third on 30th July. Isolation for 7 days in the UK without testing was never enough. Neither is 10 days. You don't get out of jail here without 2 negative tests in 24 hours.
At start of lockdown I was on 15mg Pred (was on 20 in Jan), no other health issues other than PMR, although BMI was 36 due to pred. I was concerned about possible risk of diabetes due to weight gain and pred.
With pred between 5mg and 20 would put me in clinically vulnerable group, though my GP told me to shield. I was allowed to go out for daily exercise very early in the morning. I was happy to follow her advice and college was closed anyway so could easily work from home.
I decided to use the time to remove myself from other risk categories and eliminated sugar from my diet and upped the walking. Blood sugar levels are normal and have lost 3 1/2 stone since the beginning of march.
My rheumatologist, Prof Dasgupta said that long term use of steroids weakens and suppresses the immune system and advised me that I was in a 'vulnerable' category. I should not go into work (primary school) and although I didn't need to fully shield, I should only go out if necessary and socially distance effectively. However, there's been a lot in the news suggesting that covid-19 transitions into the serious life-threatening pneumonia because the immune system goes into overdrive, the suggestion has been made that steroids therefore may offer some protection as they could suppress this action. This has NOT been researched properly and it does NOT mean that should we contract covid-19, we'd be okay. I can't emphasise that enough! I'm on 2.5mg of prednisolone now and just had a full battery of blood tests done which according to the Prof, show my immune system is now satisfactory and not compromised anymore which means I'm at no more risk of developing complications than the next person. Blood sugars, BP, kidney, & liver function etc all within normal parameters so that's positive. Diabetes, high blood pressure etc will all factors in assessing ones risk and we should all be vigilant in protecting ourselves.
I definitely think we must always be mindful of the host of side effects steroids can cause. They're definitely not to be messed with! However, I strongly believe that we should try and do whatever we can to minimize those side effects, and there are definitely things that may help. All we can do is have a go and make sure we're monitored regularly if possible. The challenging thing for me has been dealing with the constantly changing side effects as I've tapered down. Can be bewildering but lots of help here I've discovered with some very knowledgeable people.
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