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COVID-19 and The Paget's Association

Updated 4th Jan 2021

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..

Your Vaccination Questions Answered

In the last few months, we have all had to navigate our way through some incredibly unusual and difficult times. We hope that you and your loved ones have managed to keep well throughout the pandemic so far.
On December 5th, Margaret Keenan became the first person to be vaccinated as part of the mass vaccination programme against COVID-19. As she looked forward to celebrating her ninety-first birthday she said, “It was the best early birthday present". Our Chairman, Prof Stuart Ralston (pictured below), who is Chair of the Commission on Human Medicines, also had the vaccine and said, “Like many healthcare workers in Scotland, I was fortunate to be offered the Pfizer/BioNTech Vaccine soon after it became available and had my first dose on the 12th of December 2020 and I am happy to say that I have had no side effects whatsoever”.


Read on for answers to frequently asked questions.

Q. Why is vaccination important?

A. Vaccination is the most important thing we can do to protect ourselves and prevent unnecessary deaths from COVID-19.

Vaccines are an effective way of protecting people against a range of infectious diseases and since they were introduced, they have saved millions of lives each year across the world by preventing diseases like diphtheria, tetanus, whooping cough, influenza, and measles. Vaccines work by priming your immune system to recognise the bacteria and viruses that cause infections. This allows your immune system to recognise and rapidly kill the bacteria and viruses that cause infections before they have had a chance to make you ill. When we are vaccinated, we are not just protecting ourselves, but also those around us. When a person gets vaccinated against a disease or when they contract the disease themselves, their risk of further infection is much reduced. It is because of this that they are less likely to transmit the disease to others. This is known as “herd immunity”. It has been estimated that between 60-80% of the population may need to be vaccinated before herd immunity is achieved against COVID-19 so it is important that as many people as possible in the community get vaccinated.

Q. Does having Paget’s Disease of Bone prevent me from being vaccinated?

A. No. Having Paget’s disease is not thought to influence your response to the vaccine. Since Paget’s disease mainly affects people above the age of 50, who are more likely to become ill with Covid19, you should definitely consider being vaccinated.

Q. Are the COVID-19 vaccines safe and effective?

A.  Yes, Covid-19 vaccines are similar to other vaccines with regard to safety and are equal to or better than other vaccines with regard to effectiveness. Both Covid-19 vaccines, that are available in the UK, have undergone extensive checks of their safety and efficacy by the Medicines and Healthcare products Regulatory Agency (MHRA). One of the vaccines has been developed by Pfizer/BioNTech and the other by Astra-Zeneca and Oxford University. Although both are effective, a limitation with the Pfizer/BioNTech vaccine is that it needs to be stored at very low temperatures, which makes transportation and storage of the vaccine difficult. The Astra-Zeneca vaccine can be stored in an ordinary fridge, which means that it is much easier to deliver on a large-scale basis. Both are being rolled out by the NHS.

Q. Are there any side effects?

A. Both vaccines can cause flu-like symptoms and mild pain and swelling at the injection site, but these are transient and usually subside after a few days. Serious side effects are very rare. Like all vaccines, there is a possibility of an allergic reaction occurring following immunisation. If this happens, the staff giving the vaccine are trained to deal with such reactions and treat them immediately.

Q. I think I may have had COVID-19. Can I still have the vaccine?

A. Yes, it is possible for you to have the vaccine even if you think you might have had Covid-19.  Some people who took part in the vaccine trials already had antibodies against Covid-19, suggesting they might have previously been infected. Reassuringly these individuals did not experience any more side effects than those who did not have Covid-19 previously.

Q. Can I have the vaccine if I am unwell?

A.  You can be vaccinated if you have a minor illness, such as a cold, and are not feeling unwell with it. If you are unwell, vaccination should be postponed until you are feeling better. If you think you have symptoms that could be due to coronavirus, you should get a COVID-19 test and self-isolate. Once your period of self-isolation has ended, you can go ahead and get the vaccine

Q. Once I have had the first dose of the vaccine, do I need to continue to take precautions against catching Covid-19?

A. Yes, it is very important that you maintain social distancing after having the first dose of the vaccine because it does not protect you against catching Covid-19 immediately. Depending on the type of vaccine you receive it can take between 2-3 weeks for it to start working. It is therefore important to continue to follow social distancing guidance and other restrictions to keep each other safe, for as long as the government advises.

Q. How important is it to have a second dose of the vaccine?

A The second dose is important to maximise your immunity against Covid-19 so it is important to have both doses. Since you will have some protection within 2-3 weeks following the first dose, the NHS has decided to aim to deliver the second dose of the vaccines that are currently available at around 12 weeks after the first. This is so that as many people as possible can get their first dose and start to gain protection against Covid-19.

Q. How long will the vaccine protect me against coronavirus?

A. This is not known yet, but it will become clearer as time moves on. The volunteers, who have had taken part in the vaccine trials, are being monitored to determine how long they are protected against Covid-19.

Q. Will the vaccine protect me against the new variant of coronavirus that I have heard about?

A. Although the vaccines have not been specifically tested against the new variants it is thought that the existing vaccines will also provide a substantial degree of protection against them.

Play Your Part

By being vaccinated you are playing your part, in helping us all to get back to normal, and becoming free from the restrictions of the pandemic.

Why Wouldn’t You?
In December, our Specialist Paget’s Nurse asked some of our members if they were going to have the vaccine. Here are some of the responses -

“Mandy and I are both having it. Our shared view is: Why wouldn’t you?  If we are to exit the pandemic then achieving & maintaining ‘herd immunity’ in the population through a mass vaccination programme is a key aspect of any viable and sustainable plan. Mass vaccination has been with us for decades in the fight against TB, Polio, Measles & Mumps etc, and vaccination for COVID-19 is just another logical progression in maintaining public health. We have no concerns over the need for, or the safety of, the vaccine.” Mandy and Simon, Dorset

“We are both intending to have the COVID-19 vaccine at the earliest opportunity, which hopefully will allow us to get back to some sort of normality at some point during 2021. These are really strange times and although we are coping well with the restrictions, what we are missing most is being with our family.  Some winter sunshine abroad would also be nice, maybe in 2021 we will be able to?” Janet and Graham, Lincolnshire

“I will definitely be having the vaccine when I am invited to do so.  My husband is in the vulnerable category and so we expect him to be offered it first. I am classed as being medium risk and being 72 will wait my turn for that group. It will be so good to get back to normal again after all the shielding. The vaccine is our first step to freedom!” Mary, Greater Manchester

“I will be having a COVID-19 vaccination if it is offered to me. I also want to say, ‘Thank you’. I am so grateful for all the information and support the Association gives me.” Brenda, Sussex

“We will both have the vaccine, to protect us, our family, friends, and to save lives worldwide. Covid-19 is like a huge storm bringing sadness and distress to so many people in different ways. It is with hope, that these new vaccines will bring help and stability to all nations.”  Marjorie and Keith, Essex

Wait to be contacted - The NHS will let you know when it is your turn to have the vaccine. It is important not to contact the NHS for a vaccination before then.

Further Information - For more detailed information regarding vaccination visit the NHS or Government websites: 

General Questions about Coronavirus (COVID-19)

We understand that many of you will be anxious about COVID-19. 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 of Bone?

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 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 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.

PAGET'S EVENTS - LASTEST INFORMATION 


YORK - Now taking place on 9th July 2021. Follow this link for details.

SOUTHAMPTON - Now taking place on Friday 8th October 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

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

 

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