What to do about your immunosuppressant medication if you develop symptoms of COVID-19

Avoiding COVID-19 in the first place

Please first read the section about self-isolation, about reducing the chances of getting COVID-19.

Routine blood test monitoring

Of course you and we know that you need regular blood tests because of the drugs you are taking.   We believe that coming for these blood tests does actually count as being essential contact.  We would therefore advise that you DO come for your routine blood tests UNLESS you have symptoms that could suggest infection with COVID-19. 

We will do our very best to make sure you are coming to a surgery where we are not seeing any people who have respiratory symptoms.  We will do our very best to make sure you are in the waiting room for as short a time as possible to limit your exposure to other people.  Please remember that if you don’t come for your routine blood tests it might be difficult for us to carry on prescribing your medication.

We will update the information here if this advice about blood tests changes.

There is some very useful advice for rheumatology patients on the National Rheumatoid Arthritis Society website

https://www.nras.org.uk/frequently-asked-questions

What to do about your drugs if you get symptoms of infection.

When we talk about significant signs of infection, in this particular situation we mean things like – high temperature (>37.8 0C), new persistent cough, difficulty in breathing, not drinking fluids, not passing urine, being confused, being extremely tired.  Don’t forget you might have specific signs of infection for other reasons than COVID-19.

Patients on sulfasalazine and hydroxychloroquine  – you do not need to stop your medication.

Patients on regular long-term steroids (e.g. prednisolone) – you must not abruptly stop the steroids.  It is not safe.  Contact the rheumatology service for advice.

We know from the guidance we have been given, that the following drugs are definitely on the group 2 list:

azathioprine, mycophenolate, myfortic, cyclosporin,

sirolimus, tacrolimus (oral)

It is highly likely that a number of other rheumatological drugs are also on the list.  We have not been given a complete list and we are hoping for more clarity in the near future about the other drugs.  For some drugs it might be considered that different doses make a difference to whether you are in group 1 or group 2.

We expect that all patients who are on drugs, or drug dosages, that put them in group 2 will be receiving letters with specific advice from the hospital. 

If you do receive a letter, we strongly advise you to follow the group 2 advice.  Essentially the advice is that if you develop any symptoms that might be COVID-19 you should ring NHS111 straight away even if your symptoms are mild.  And you should stop the drug.  If NHS111 tell you to stay at home, then you must ring the rheumatology service for advice about your medication, and please you could you let the practice know that you have had that advice.

Methotrexate

We think that the question about whether methotrexate puts a patient in group 2 might cause some concern and confusion.  At the moment, we think this might be one of the drugs for which the dose makes the difference.  We are trying to get some more guidance about this so that we can answer any questions.  We are sorry we can’t give you a clear answer at the moment.  It seems to us that patients on methotrexate will be in at least group 1.

Patients who are on methotrexate, should stop the drug if they get signs of infection, and get further advice from the rheumatology service.

The rheumatology service

The phone number for the rheumatology nurses is 01253 957068.

In normal times, the rheumatology service often does not return your call on the same day.  If you have not heard from the rheumatology service within 7 days of stopping your drug you can ring the surgery.  We might not be able to give you immediate advice, but we will do our best to help you as soon as we can. 

In our experience, the rheumatology service often advises that patients can restart their medication after 2 weeks, but we would not give this as blanket advice to everyone without consulting with a rheumatologist.

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