COVID-19 (Coronavirus) and The Paget's Association UK

Updated/checked 23rd March 2020

We would like to reassure all our members that the Paget’s Association continues to offer support to anyone affected by Paget's Disease of Bone.

Although our working arrangements are a little different at the moment, our Nurse Helpline and office phone lines are still available as normal, should you need to contact us.

We are currently reviewing our planned events and if there are any changes, the information will be placed on our website and on our social media pages as soon as we have it. If we make any changes that directly affect specific individuals they will be informed as soon as possible.

Information about coronavirus (COVID-19)

We understand that many of you will be anxious about COVID-19. The best place for up-to-date information regarding COVID-19 is the government/PHE website

Here are the answers to some of the questions that we have been asked, which are relevant to those with Paget's Disease of Bone:

Q. Am I at increased risk of COVID-19 because I have Paget’s disease?

A. No, having Paget’s does not put you at increased risk of catching COVID-19. Neither does it increase your risk of having serious complications should you have the virus.

Q. I am due to have an infusion of zoledronic acid. Should I still have it and what if my appointment is postponed?

A. If you have an appointment to have an infusion you should attend as normal unless instructed not to do so by the hospital. If your infusion treatment has been cancelled or postponed, and you have bone pain associated with Paget’s disease it is possible to have bisphosphonate treatment in tablet form (Risedronate). Please check with your doctor if this would be suitable for you.

Q. If I get a fever after an infusion of zoledronate, does that mean it is COVID-19?

A. It is known that a potential side-effect of zoledronate is a high temperature, however, it is usually mild and short-lived. If you do get a temperature after receiving zoledronic acid and it persists for more than 2-3 days you should self-isolate according to the current advice from Public Health England.

Q. What about other procedures?

A. If you have any procedures planned which are related to Paget’s disease, such as an x-ray or scan, postponed, this should not have any long-term detrimental effects. The NHS will still have availability for any very urgent procedures, such as if there is concern that a fracture may have occurred. The NHS will balance the benefits of going ahead with procedures with the risks of patients getting coronavirus or bringing coronavirus into the hospital. There should be a contact email you can use if you have more questions for your hospital team.

Q. What about painkillers?

A. Non-steroidal anti-inflammatory drugs (NSAIDs) are medicines that are widely used to relieve pain and are commonly prescribed to patients with Paget’s disease. You may have seen some news stories about not using ibuprofen (which is a type of NSAID) at the present time. This advice is specific to people who have a cough or a fever who might be developing COVID-19. In these circumstances, it is advised that you should take paracetamol as an alternative to ibuprofen. If you do not have a fever or cough and you are taking ibuprofen or another NSAID for pain relief, this treatment can be continued as normal since there is no evidence that they would make you more likely to get COVID-19.

We're Here for You

We hope that you are all safe and well, please do not hesitate to contact us if you have any questions about Paget’s disease or our events.

You can find up-to-date information regarding COVID-19 by following this external link

 

 

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