I have had RA for the last 50 years and since 2005 have been on Anti TNF biological infusions every 6 weeks at the hospital. However since a few weeks ago when my next infusion was due and because of the COVID situation my appointment has been cancelled until further notice. I understand from the Rheumy nurse that this is because all nurses are being told that they are wanted on the COVID wards to help the situation and their normal duties have to stop. I know that because I have my infusions in the same room as the Cancer patients having chemotherapy, their treatment has also been halted. I think this is going to be a complete disaster for the NHS in the long run as if some of these patients don’t die through their illness then they could be hospitalised for long periods. Have any other RA people experienced this type of treatment? The Government really needs to look at the NHS long term and provide a lot more investment and staff to take care of the under development that has taken place over the many years. They could start by paying the nursing and caring staff a decent salary then perhaps more people would want to join the profession.
Biological Infusion : I have had RA for the last 5... - NRAS
Biological Infusion
I totally agree with you my daughter is a nurse she s doing 12 hrs shift with a family 3 young boys teaching them at home as well I see her on face time and she is knackered they should give them all a big pay rise and then like you say more people may go into the profession at the moment her husband earns more in a warehouse how crazy is that 😷
Yes, it’s awful. All very well for government to say they are doing well with the vaccine (which they are) when other aspects of the health service are in tatters.
One of the points from the studies into being prepared for a pandemic was that the NHS needed more investment in preparation. Shame that was ignored.
Which anti-tnf is it? Is there an option to swap to self injections?
Hi helix I am on Infliximab and has to be by infusion. Thank you.
Remsima is self-injected and is Infliximab?
Remsima 120 mg solution for injection in pre-filled syringe
Each 1 mL single dose pre-filled syringe contains 120 mg of infliximab*.
Remsima 120 mg solution for injection in pre-filled pen
Each 1 mL single dose pre-filled pen contains 120 mg of infliximab*.
Yes you are right but Remsima is the biosimilar of Infliximab. Infliximab still has to be delivered by infusion.
Better than nothing?
Yes you are probably right. It is worth considering if it comes to it and if they will allow me to change. I believe it is the hospital management that are dictating to the other departments as they are in other hòspitals throughout the UK.
they are assessing people for infusions here but anyone in need is being reviewed by consultants and done
they are still answering the helpline and doing clinics as far as am aware, Am in North Lanarkshire and it’s about as bad here as anywhere
If they were being drafted anywhere i would have thought the vaccine program would be more appropriate use of their skills.
The NHS and the nurses have been seriously neglected over many years, it needs a shake up, it needs more money, I completely agree.Also, though, it needs to be appreciated more and not be abused so much by some users. It’s diabolical that nurses and other staff are treated so badly by the public at times. No idea how that problem could be solved...
When you read news reports of party,s on boats, in hotels, pubs having back door openings, people taking skiing holidays etc. ... during this pandemic, with the UK being so badly hit, I wonder how on earth you get to this point.
National service - which could be any public service, but in a very disciplined way, maybe?
I believe that they are still doing infusions I my part of Staffordshire. I am on rituximab. Normally 6 monthly for me. However, my rheumatologist is reluctant to do this until I have had the vaccination if at all possible. I have, instead, increased my methotrexate and slightly upped prednisolone. This is not ideal but manageable.
I'm due to start infusions. They said over the next week. How do you find them? I don't know anyone that's had them to be able to ask. I'm currently having the worst flare up I've ever had as been off I jections for 3 weeks due to infection
Well said, I am lucky that I take one of the strong RA meds in tablet form. I really feel for the cancer patients if they are having treatments stopped and even you for the pain you will have if you have no infusions. Surely a small office room and one nurse can be spared for this!
Thank you for replying. Yes I also take Methotrexate in addition to other anti ìmflammatories which helps greatly, but the main lifeline I have is from the infusions. I really feel for those Cancer patients who are currently living a possible sentence. Terrible that this situation should ever arise in the 21st century!
There needs to be a balance between the urgent needs of Covid 19 infections and other urgent treatment. I would be inclined to write to say this to the Health Board responsible with a copy to PALS and perhaps to the press.
In the area where I live this seems to be possible.
I’m on Rituximab infusions twice in two weeks, every six months. I had mine last July and have just had my latest two in January. Our specialist nurses have been re-deployed to the wards but have returned my calls, so I’ve been very lucky I guess. At our hospital they don’t get involved in my infusion treatment - it’s done by different nurses. I also have three friends and my sister-in-law who’ve all undergone treatments and surgeries for cancer since last March and all doing very well/got the all-clear. I know not all have been this fortunate though.
Hi thank you for your reply. So glad you have been lucky with infusions and your friends and sister in law have got their cancer treatments. Really really important. I was a little upset that they cancelled my infusion as I desperately need it and were not picking up on the help line also. However just today I had a call from the specialist nurse to say I can have my imfusion next week. It appears that as the nurses had been redeployed in the Covid wards they had to isolate for a period after coming out.
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