Confused (yet again)

[Froggie70]

Hi all

Had a very interesting chat with one of the Rheumatology nurses at my hospital today. Apparently my monthly blood monitoring can now move to six monthly during the current situation, looking to do this for most of their patients. But the thing that really confused me was during our chat about shielding and strict social distancing she said that Lupus didn’t really put you at more risk of severe illness with coronavirus than anyone else and neither did taking Methotrexate. Have I been confused and missed something over the last 9 weeks?

Please don’t anyone here take this as new advice, I’m still going to stick to staying in until I actually speak to a consultant but I feel as if the message has just gone 180 degrees.

What do you all make of this?🤔

[PMRpro]

They have been revising the qualifications for risk - not least because they know a lot more now than they did. But what worries me is how much has been down to GPs reports of their patient's medical conditions.

However - it is very clear that younger, apparently otherwise healthy, patients can also catch Covid-19 and become very ill. I don't think anyone really is at a higher risk of CATCHING it in the first place as no-one has an gained immunity. But then it is a case of whether your immune system can cope with the infection and beat it while you are receiving supportive care. In that sense we ARE all in it together.

Risk factors are clearly age (over 60), obesity, diabetes, lung disorders, hypertension and renal disorders. If you were on methotrexate they would stop it immediately - but the question is how long the effect remains in the body.

[svfarmer]

I was shielding for 8 weeks - I take methotrexate but then after 8 weeks I had a letter from my GP saying that I don’t have to shield as I’m not on steroids so not at risk !!!! It’s all so confusing x

[Hidden]

I think the main reason my rheumatologist (Scotland) supported a different specialist’s call for me to have a shielding letter is because my husband is a key worker who was working on front line.

I’m quite new to Mycophenolate and I am overweight and have hypertension. I think it was these factors combined that decided them that I should be shielded so that my husband could get furlough, we could get priority food deliveries etc. This didn’t come from my GPs, who have frankly been hopeless as blood monitoring requires me to attend the practice and is done by a phlebotomist not in PPE gear. But it has taught me a lot about getting weight down, self monitoring and which part of the healthcare system I can trust or not. I was so paranoid at the start but now I’m just applying a lot if common sense and the main worry about end of shielding is my husband’s furlough situation as we don’t trust his work place enough to keep him safe. Otherwise I suspect he’s as much at risk from Covid19 as I am. I don’t know if our AI diseases or treatments put at more at risk in themselves or not. I know that in theory having Scleroderma puts people at high risk because of pulmonary and heart problems associated and it’s the AID most associated with fatality too.

I don’t think this applies per se to any of the other autoimmunes though. I think it provably depends which - if any organs are involved I’m guessing. Someone with Lupus Nephritis or CNS Lupus might be classed as higher risk because of the impact Covid19 often has on the brain and kidneys. Men are more at risk of severe or fatal Covid19 than women and of course women are at much higher risk of getting autoimmune diseases. Where a person carries weight is also a major factor.

Personally I feel safer on immunesuppression and have lost about a stone and worked hard on my fitness at home and going for evening walks on an empty golf course since lockdown. So in lots of ways I think I’m less at risk from severe Covid than prior to my shielding letter. But my BP is still swinging and I still have a few stone to lose so I’m avoiding the busy world, family etc until there’s a vaccine or until track and trace are being properly implemented. And working on the weight, fitness, BP etc from my little ivory tower until i feel I’ve got better control of my AIDs.

[misty14]

Hi froggie

I too was told my mtx blood monitoring could be 3 monthly because of covid . They had a new directive from the British Society of Rheumatolgy to implement new testing guidelines according to how long you'd been on the drug and what your bloods have been like. you must have been fairly stable for them to decide 6 monthly. I did think though that it is a long time not to see if anything has changed although if your suddenly unwell then a blood test would be done or you can ask for one. Covid just brought this need forward!.

I went to have my blood test and because my liver reading has suddenly changed they're now going back to monthly. I've been on the drug 5 months now. If your results changed then this is what should happen with you.

This is a way of bringing more clinical flexibility into the mix and I do feel the nurse you spoke to was wrong about downgrading your risk. I know there learning more and more about covid but any immune illness and the DMARDS of which steroids are included, do put us at increased risk of catching things like this because our immune systems are lowered. I was also put into the shielded category because my daily steroid dose was 5.5mg and I'd been on it a long time. My gp who missed it said I only just qualified to be in this category!. Ugh!.

Hope that's helpful and you feel less confused!. Keep well and safe,Xx

[littlemissp]

Hi PMRpro

I am also on Methotrexate and have been told the same thing by my consultant Rheumatologist that as long as I keep a safe distance from others and keep washing my hands there is no need for shielding. I am also confused as I was told to shield. What I think has happened is that there was a blanket rule to shield for all Lupus patients when all of our circumstances are completely different. I will now be going out.

[Paul_Howard Partner LUPUS UK]

Hi Froggie70 ,

There is some debate about whether lupus increases the risk of complications to COVID-19 in isolation. The guidance from the British Society for Rheumatology (BSR) suggests that if it is well controlled and the person is only on hydroxychloroquine (or nothing) and has no other risk factors, then they may be at no clear additional risk and just advised to follow standard social distancing.

My (non-medically-qualified) opinion is that the guidance from BSR may be oversimplified and can't account for the various rare systemic autoimmune rheumatic conditions. Anecdotally we know that people with lupus are more likely to have complications from respiratory viruses, such as pneumonia. I would feel more comfortable if people with lupus err on the side of caution when it comes to shielding etc.

[Froggie70 in reply to Paul_Howard]

Absolutely agree. I did sway on whether to post at all as I didn’t want to confuse the existing message that’s why I added that this wasn’t new advice but i wanted to know what other NHS areas were telling their patients as I think I was sold a pup yesterday.

Thanks again Paul.