Confused about hydroxychloroquine

[pattypatchwork]

Hi,

Can any one clear my confusion up as to whether hydroxychloroquine is an immunosuppressant and if we are classed as high risk?

When I was prescribed the tablets last year I had an appointment with the Pharmacist of the hospital who went over them with me and told me that if I get an infection etc whilst on them I may have to stop them for the duration due to them lowering my immune system. When I had minor surgery last December I was put on strong antibiotics immediately and had to have longer off work than normal BUT have now been told by a Rheumatologist (by phone) that they are NOT an immunosuppressant and that I have less chance of catching Covid 19 than the normal man in the street. I did not receive one of the letters advising that I am one of the Sheltered during this time but have treated myself as high risk. Yesterday the receptionist of my G.P. said that I am not even that and that I can go about my life as a normal person - am very confused as you can imagine.

[Spanielmadlady]

Hi patty.im no doctor but hydroxychloroquine doesn't alter the immune system enough to be classed as an immunosuppressants so doesnt qualify you for shielding.i take hydroxchloroquine as well as prednisolone and mycophenolate but it's the last two that alter my immune system enough to warrant shielding untill July 31st and beyond but that's my personal choice. Hope it helps xx

[pattypatchwork in reply to Spanielmadlady]

Hi,

Thank you for replying to me. That has helped me.

[Spanielmadlady]

I have an excellent book called the lupus encyclopedia by john Hopkins university 👍

[PMRpro]

"Hydroxychloroquine (Plaquenil®), a medication often taken by Sjögren's patients, is not generally considered an “immunosuppressant.” While it does change or “modulate” the immune system in various ways, it does not lead to an increased risk of infections and does not require lab monitoring"

HOWEVER - it isn't the drug necessariy that leads to the shielding classification - it is the other things associated with your illness. i.e. you may not be at any greater risk of CATCHING Covid, that happens easily enough even among otherwise healthy individuals, but if you DO get it it may be harder to manage your symptoms while you recover. It's a horrible virus - and can cause lasting damage to lungs, cardiovascular system, kidneys and even cause diabetes.

OTOH - they seem to be continuing the study on hydroxy's preventative effect even if it doesn't work to treat Covid once you have developed symptoms.

[Paul_Howard Partner LUPUS UK]

Hi pattypatchwork ,

As other members of the community have said, hydroxychloroquine isn't an immunosuppressant treatment. It is classed as an immunomodulatory drug and importantly is not considered to increase your risk to COVID-19.

An individual's risk is not only decided by treatment, but also based on other factors such as whether the disease is well-controlled and whether you have any commodities. You can read more about this in our article here - lupusuk.org.uk/coronavirus/

[miccika1]

It's more of an immunomodulator not immunosupressant. I have been on it plus hevy immunosupressants for years and im still having normal white blood cells, although towards the lower normal. I could imagine if im only on HCQ i would not be at all immunosuppressed. I do believe that you should be very careful in public during the pandemic as well as in general as any infection might flare up your lupus and make you miserable. Just follow please all the advice on masks, hand washing and social distancing and you should be fine.

[Hamptons]

Essentially, if you are only on hydroxychloroquine then you score 0 on the rheumatology risk scales and social distancing only. We dropped as the lockdown went on. If you feel you have Lupus symptoms that could put you more at risk like lung or kidney Involvement it’s best to clarify with your medical team whether you pose a higher risk.

Like you I isolated for much of lockdown anyway as my work enabled Neto do that. Still important if you are social distancing to be overly cautious with hand washing etc.

[Sara_A]

The rheumatologist is correct and it is not classed as an immunosuppressant and therefore u are not classed as high risk and shielding by being on this drug.