Hello everyone, and I hope you are all staying safe ( and sane) in these scary times.
Forgive me if someone has already brought this to people’s attention, but I only just came across this important statement put out by the NHS which most certainly affects me, and could affect other GCA sufferers who are on Tocilizumab (sub-cutaneous weekly self-injections). Indeed, I have passed it to my consultant and am hoping she will apply for this extension on my behalf. It was released on July 30th 2020.
Summarising this statement, the NHS has agreed an emergency extension of Tocilizumab treatment during the Covid-19 pandemic, though this does need to be applied for on an individual basis by our clinical practitioners.
The NHS recognises that once GCA patients cease Tocilizumab treatment, approximately half will suffer a relapse within 2 years of discontinuation, “exposing them to Covid-19 through physical attendance or admission to hospitals, and to the immunosuppressant risks associated with starting another high dose regimen of glucocorticoids”.
What shocked me in this article was the statement that only 250 patients in England are currently on Tocilizumab for GCA. I have been one of those fortunate 250 people. Tocilizumab has been a life-saver for me, and since March I have been on no other medication whatsoever (after 3 terrible years on prednisolone).
I have had no adverse side effects from Toc. treatment and am terrified by the prospect of my treatment coming to an end because I had severe, life-threatening attack of large blood vessels (but no physical symptoms - apart from raised CRP and ESR, I would not know I am very ill) and high doses of prednisolone very nearly killed me.
Tocilizumab (Ro-actemra) comes off licence this year and the hope is that other pharmaceutical companies will produce generic ( cheaper) versions to enable more people to at least try it.
Best wishes to you all, Ros
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Suzita76
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Thank you for sharing this Ros. Try not to leap into the future and get all anxious about what may never happen. My very experienced Rheumatology Nurse was very good on this point. She has seen similar scenarios over the years and her feelings are that people such as yourself will continue to obtain the medicine they require, for as long as they require it. GCA patients are demonstrating, all the time now, that this is a very effective drug for them where other drugs have failed.
Can I ask how you were diagnosed and what made it life threatening?
My symptoms were not at all typical and my diagnosis was by ultrasound scan ( doctor’s experience and intuition).
Good morning dear lady, and I want to thank you and all of your fellow experienced supporters/ advisers for always being there when we need you!
Initially, I was diagnosed (June 2017) purely on raised CRP/ ESR (after suffering temporal headache and inability to properly open my jaw for a month). 14 months later, having very gradually reduced Pred. dose from the initial (almost lethal) 60mg to 3mg, a blood test showed a sudden massive rise in CRP and ESR, but with absolutely no symptoms, so I was sent for temporal ultrasound ( negative) and then a PET-CT scan, which showed very extensive and serious attack on all major arteries i.e. large vessel arteritis
Back on high prednisolone, I suffered the same serious side effects as initially (the worst being severe psychosis, hallucinations, desire to jump off tall buildings, no sleep for days, inability to stop sobbing .... as well as the normal pre-diabetes, moon face and hair loss).
My consultant recommended I be put on to Tocilizumab (which I eventually started 8 months later, following another flare of ESR/CRP). My ESR and CRP levels have been a steady 5 and 1 ever since then, and since March, I have taken no other medications whatsoever, but at my last (phone) consultation, it was confirmed that my Tocilizumab would not be extended after the year recommended by NICE. My consultant did offer to put in an Individual Patient Funding request but warned that she didn’t hold out much hope.
Hi I came across this last week, funnily enough after speaking to the rheumatology nurse who was still saying I would finish my injections in November. I feel much better thinking that it will be funded until April 2021 , and hopefully by then Nice will extend it for LVV patients
Thank you for this Suzita. My year on TCZ will be up next March, but at least this might give me an extra month!
Like you, I was found to have 'silent' LVV in my aorta and its branches. It was discovered by PET-CT scan after my CRP & ESR continued to rise, with few symptoms.
Let’s hope that the extension will be further extended beyond April, and that NICE can be persuaded to be as compassionate to LVV -GCA sufferers as they are to RA patients.
I read a rather disturbing publication about reduced life expectancy of LVV-GCA patients unless treated promptly and properly (increased mortality from stroke, aneurysm etc.) so this is a severe and potentially life-threatening condition.
Love your rugs! My Irish grandmother taught me to make these and her house was filled with beautiful examples. She made gorgeous (and much treasured ones) from our out-grown clothing.
"Live for the day" should be our motto - if Covid-19 would let us!
Thanks for your comment about the rug. When we have done demonstrations (pre CV-19!) people often have memories of rugs made by and with family members.
Mine are made with 'waste' fabric from local mills - samples or damaged lengths.
That’s a fantastic way to stop waste and save it from going to land fill. I used to make rag rugs from old fabric but haven’t done any for years- maybe it’s time to start again.
No, NICE decided it could only be offered to patients who were resistant to treatment with pred and only for a year. Somewhat pointless concept I imagine - though not sure what they then do in a patient who has gone into remission with TCZ and then it returns
NICE - National Institute for Health and Care Excellence
The problem with GCA /LV- arteritis sufferers is that they are mostly female (3 to 1) and elderly. The NHS maintains it does not discriminate but.......
“ I do believe that treatment for PMR/GCA got left behind somewhere in the dark ages.” - too right!
But as we’re always saying, it’s not life threatening (except in very rare cases), it affects older patients, existing medication (Pred) is cheap as chips and it’s not sexy enough for go-getting doctors or scientists!
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