Article: Exciting time for biological use in Lupus

[VeeWat]

healio.com/news/rheumatolog...

[StriatedCaracara]

Thanks. An interesting and informative article.I read it to the end.

'Biologicals' as they are currently known, are expensive so enormous profits are being made, they have not been tested across the broader spectrum of disease, long-term side effects are still relatively unknown.

Glad they are helping to make headway and reduce steroid use. However I feel rheumatologists need to have a balanced approach, not just being interested in what is new and very exciting.

My father's lymphoma chemotherapy made use of related drugs. They helped for twelve years, but malignancy worsened in the end in part due to this journey and it became untreatable.

Early treatment with antimalarials is also essential and there need to be sufficient rheumatologists and more open minded criteria used to define who should get help.

(Using the 2019 EULAR/ACR SLE Classificatuon criteria, intended only for research purposes, to determine who and when to treat is probably because now so much is tied to promoting the use of newer treatments and whom these drugs have been tested so far makes the job safer)

Within the NHS here, too many are dismissed now because blood test results don't qualify them for symptoms to be considered or treated. This is because these 2019 criteria are being used to determine caseload. Many can only get help if they 'step outside' and see specialists often much more experienced, that are not being forced to work this way.

Basic antimalarial use needs to be extended and simple drugs like mepacrine, now unlicenced, be added routinely to options available early on to slow progression of the condition so flares are less and organs don't get so badly affected. When the system fails even at this level how can many of us be confident about anything?

It is a good, well balanced article. Thanks for sharing - it is easy to read and allows us to see the bigger picture and put things in perspective. This is really important for us as patients👍🙂

[StriatedCaracara in reply to StriatedCaracara]

The soon-to-close 'Lupus Europe survey' is worth us completing as it seems to be gathering feedback from patients on treatment options they would consider.

It not only gathers information from Lupus patients but also those with Lupus symptoms who are curently not diagnosed with SLE.

So, all of us affected can take part, no matter where we are in our Lupus journey.🙂

Near the end , there is a free text field where we can say what most affects us and our families, regarding treatment, which may be worth prepping first and then copying over. (I wrote three sentences and did not hit the character limit.)

healthunlocked.com/lupusuk/...