Has anyone been told to shield with PMR? I have had it for two years now and my GP ( who is amazing by the way) told me I didn’t need to shield - just wondering what others have been told
COVID Shielding: Has anyone been told to shield... - PMRGCAuk
COVID Shielding
I was told to shield during the first wave (I also have type 2 diabetes) but haven't been told anything this time, but am expecting to be told to shield.
It was discussed widely at the start in March. You can find all the discussion via this post:
healthunlocked.com/pmrgcauk....
It was felt at the outset that having PMR put you at an increased risk if you caught Covid. Then you had to add on other possible illnesses and medication. PMR in and of itself did not really qualify you for shielding - it was duration and dose of pred, other immunosuppressant medication and other likely comorbidities: hypertension, diabetes, obesity that were add-ons and might make you extremely vulnerable.
The views now have changed - pred is no longer perceived as a risk factor, the first thing you are likely to meet if you were to catch Covid is an increased dose of pred under sick-day rules depending on your current dose and should you become sick enough for hospital you would be given corticosteroids to prevent you becoming sick enough for ICU care.
You are at no more risk of catching Covid - no-one has any immunity. All of us should be keeping away from others as much as possible - no crowded places, not meeting people in homes, wearing face coverings and hand washing at any opportunity.
I have to say - nothing would induce me to go somewhere indoors for a meal at present whether it was another family member or in a restaurant, however "covid-proof" it appears to be. But that is because I know if my husband caught it, it would be curtains. I have to go out to shop and we have walked into the village to sit in the sun with an aperol spritz. But only outside and at least 1m from anyone else and masks to hand.
I did a Post a couple of days ago, l’ll link it to you.
This time ‘Shielding’ is going to be very different with less stringent parameters.
Apparently, they will be writing to everyone who was Shielded last time with Specific Guidance; but from what l’ve read so far it’ll be people having Chemotherapy, Post Transplants (if there have been many/any) Pregnant Ladies with known Heart Conditions & if you’re on Immune Suppressants.....
healthunlocked.com/pmrgcauk...
Kind Regards
MrsN
“Those with the following conditions fall into the clinically extremely vulnerable group:
solid organ transplant recipients
people with specific cancers:
people with cancer who are undergoing active chemotherapy
people with lung cancer who are undergoing radical radiotherapy
people with cancers of the blood or bone marrow such as leukaemia, lymphoma or myeloma who are at any stage of treatment
people having immunotherapy or other continuing antibody treatments for cancer
people having other targeted cancer treatments that can affect the immune system, such as protein kinase inhibitors or PARP inhibitors
people who have had bone marrow or stem cell transplants in the last 6 months or who are still taking immunosuppression drugs
people with severe respiratory conditions including all cystic fibrosis, severe asthma and severe chronic obstructive pulmonary disease (COPD)
people with rare diseases that significantly increase the risk of infections (such as severe combined immunodeficiency (SCID), homozygous sickle cell)
people on immunosuppression therapies sufficient to significantly increase risk of infection
women who are pregnant with significant heart disease, congenital or acquired
other people who have also been classed as clinically extremely vulnerable, based on clinical judgement and an assessment of their needs. GPs and hospital clinicians have been provided with guidance to support these decision.”
Thank you that’s really helpful and I appreciate the depth you’ve gone into
No Probs l have a vested interest as l’m on Methotrexate but as far as l can ascertain they now don’t believe being in Steroids makes us more at risk & May in fact be beneficial, l will copy you a leaflet you may find helpful.
healthunlocked.com/pmrgcauk...
Thanks for all of this. I am confused though...I asked my doctor yesterday ' at what level of pred are you no longer considered immunocompromised and at risk?' She said 'zero'. Any amount of steroid inhibits your immune system.
This implies that we are high risk. I am however still going to the supermarket and on buses, but taking care and trying to distance. We have to live while we can I think!
It also implies we are at risk even when on no pred - as the body needs and makes the equivalent of 7-8mg pred in the form of cortisol. So really, she is wrong!
Yes, I dont think she is very well informed.
Can I ask you another question...? I take the pred in split dose and I have started to take the morning dose as late as possible in the hope that it will trigger my adrenals to start working. Do you think that's a good idea? I have no symptoms in the morning, but get a few niggles in the evening.
You can only try - though the pred level in the blood at midnight is probably more significant as that is when the circadian rhythm operates the switch. But if it works well for you that is what matters most - does it help the evening niggles?
The evening niggles start about 7, and I take the pred about 9 - 10, so not really! Maybe I should take it all in the late morning, so there would be nothing left at midnight??
How much do you take at night? What about taking it about 5pm if it is a small amount? Then the blood level will have fallen by midnight and you can take the morning dose an hour after getting up. If that works that would be the best of both worlds.
Ok thanks I'll give it a try. I'm taking 2 at night. 7 .5 in morning.
But other problem is trying to cut down on eating - so I dont want to add extra food just to take the pills! Before all this I kept weight off by not eating till lunchtime, and I'm trying to get back to that. I will eat earlier in the evening and take the pred then I think. Thanks for your input.
Is Actemra in this list?
Alvertta, l’m sorry but I am not conversant on Actemra so l am unable to comment but l would recommend you speak to your Rheumatology Team for advice.
Sorry l can’t help
MrsN
If you mean medications meaning you should shield, I doubt it somehow since tocilizumab/Actemra is now being used to treat severe Covid-19 cases along with corticosteroids.
leedsth.nhs.uk/a-z-of-servi...
summarises all the advice Leeds rheumatology department has issued - and was accurate as at September 24th. I won't say your rheumy team will know - but they should.
We have just gone into Lockdown again here in Northern Ireland - we are first as our Covid rates in some parts of the country are the highest in the UK.