Keep up to date with regular news items that may be of interest to you, along with notices of meetings and member’s days.
We have been asked to seek member involvement in a health-related consultation for the Scottish Government. I have largely copied the wording we were sent, but have tried to translate the worst bits of government-speak into ordinary language
The charity has contributed significantly to an application to get a new drug treatment approved for use in NHS Scotland. I am delighted to say that this has been successful and Upadacitinib (called Rinvoq by the manufacturer) will be available as an option for treating GCA.
We have been asked to help with an international project aiming to develop guidelines on the
treatment of GCA. The project team is led by Christian Dejaco (Italy/Austria) and Carol Langford
(USA) and UK members are Bhaskar Dasgupta, Sarah Mackie and Rashid Luqmani. In addition, our
own Lorna Neill is the UK patient representative.”
I’m delighted to be welcoming you to this spring edition where we have a particular focus on research. There is so much still to understand about auto-immune diseases in general, and PMR and GCA specifically, so it is always heartening to hear about scientists and doctors in the UK, and further afield, who are striving to learn more about these conditions and how to treat them.
It is hard to believe that we are drawing to the close of another year where covid-19 has dominated our lives. While we have been relieved that lockdown rules have relaxed, vaccines and boosters have been and continue to be administered, it isn’t a surprise that our helpline has been busier than ever.
Its been lovely to feel a sense of normality returning as lockdown rules are relaxed and i hope that many of you have been able to see family and friends again, albeit in a safe and socially distanced manner.
Spring brings a sense of optimism and this year is no different. The vaccination rollout is well underway and its been wonderful to hear from members who have been getting their vaccines over the last few months.
We’re drawing to a close on what I think we can all agree has been the most challenging of years. Weve had to retreat behind closed doors for lockdown and when the rules were eased many of us remained shielding and have been dealing with anxieties relating to health PMR, GCA or otherwise as well as the impact on our mental well being.
It’s been a busy few months for PMRGCAuk. Coronavirus has affected us all. We’ve had to evolve our working practices for day to day things such as meetings and to think hard about how we could create a PMRGCAuk week to remember not easy when many are shielding.