COVID-19 and The Paget's Association
Updated 13th Nov 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 will be producing information regarding the COVID-19 vaccination programme in due course.
LASTEST INFORMATION - OUR EVENTS
YORK - We have taken the decision to postpone our Paget's Association Member's Day in York until 9th July 2021. Follow this link for details.
SOUTHAMPTON - Our October Paget's Information Day in Southampton has been postponed until autumn 2021. Click here for details.
SUPPORT GROUP MEETINGS (Manchester and Sheffield) - All Support Group Meetings have been suspended. Support remains available via our Paget's Nurse Helpline.
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. When attending, you should follow any instructions given with regard to COVID-19.
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 or investigations?
A. If you have any procedures or investigations 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 and investigations, such as if there is concern that a fracture may have occurred. The NHS will balance the benefits of going ahead with investigations and 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.
Q. What about face-coverings?
In June we suppled a mask / face-covering to our members for their personal use. Non-members can purchase masks from our shop whilst stocks last. They are classed as a 'face-covering' and have an optional filter, which can be placed in the pocket between the two layers of fabric. Whilst we are not able to supply replacement filters, the fabric face covering can be washed and reused. The UK Government’s advice is clear that face coverings and masks are not a substitute for social distancing. They advise, however, that face coverings are worn in enclosed places where social distancing may be more difficult to achieve when you are likely to come into contact with people you do not normally meet. This is most relevant for short periods indoors and in more crowded areas, such as on public transport or in some shops. There is evidence that face coverings can protect others from getting infected if you have coronavirus but have not developed symptoms. Emerging evidence suggests that they may also afford some personal protection. It is important to remember that face coverings are not a substitute for social distancing and handwashing, which are the most effective ways of avoiding coronavirus. They do not offer the same level of protection as surgical masks or respirators used by doctors, nurses and other healthcare workers as part of personal protective equipment. Remember, if you have symptoms of coronavirus, for example, a cough and/or high temperature, or loss of taste or smell, you and your household should isolate at home. Wearing a face covering does not change this advice.
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