Interesting article: "Scientists Cure Lupus in Mice with a One-Two Punch"

[milkwoman]

Just saw this today (apologies if this has already been posted here).

healthline.com/health-news/...

[lupus-support1 Administrator]

I have read the article. Unfortunately, the word "may" appears which is a journalistic weasel word allowing the article to grab the attention of those with "lupus". There are thousands of scientists, medical doctors all over the world working in order to understand autoimmunity. For example, the immunoglobulins are clearly important and in certain patients with lupus, IgG, IgM are affected - but no one knows why. Research into T-cells and B-cells is also taking place and while knowledge is growing every year, lupus is not yet curable. Lupus is particularly difficult because it involves almost every single organ in the body. Type 1 diabetes, RA and MS are in the same genetic family.

Many years ago, there was excitement when it was discovered that in woman with lupus, serum prolactin was elevated - this rises in pregnancy to produce breast milk. A small study was conducted in Mexico whereby a drug used in infertility (prolactin will prevent pregnancy and is associated with infertility) was given to a cohort of women. At first, this group reported they felt better, but over time, they reported their symptoms returned. There was great disappointment because the team believed to have found a "cure". Additionally, what about men with lupus? They do not have serum prolactin in their bodies.

These scientists are clearly working on something important., but as yet we do not really know whether this is significant. Since lupus involves over 20 genetic markers and is a complex autoimmune condition, I am convinced, although not a scientist or doctor, that getting to the "cause" is not going to be simple. This research may well add to the data and for that, the research team should be commended.

I realise I may be the "party-pooper" but I am very critical of journalists who sensationalise their headings. What angers me is that lupus sufferers are targetted with little regard for how the journalists are literally playing with their feelings. Reporting is one thing, using the "cure" deliberately entices vulnerable people who are then disappointed. Even if this is successful, the FDA has to approve of one drug even before clinical trials on humans.

Thanks for posting because being aware of what is happening is also a way of feeling less helpless.

With good wishes,

Ros

[milkwoman in reply to lupus-support1]

You are VERY insightful, Ros, and I so appreciate your take on this. I tend to agree with your assessment. I think in a small way it is good knowing that scientists are actively researching autoimmunity disorders and attempting to (a) gain knowledge and (b) find more treatments to help all of us suffering with lupus with the hope of discovering a cure. Will I see one in my lifetime? Probably unlikely because even IF something of a breakthrough is discovered, it will take a decades for "it" to become accepted and mainstream (as you've mentioned above).

[lupus-support1 Administrator in reply to milkwoman]

You "may" (!!!) be interested in the following story in which medical cannabis is being used to treat inflammatory conditions. Israel is one of the leading countries in research in lupus and other areas. Although lupus is not mentioned specifically, other autoimmune conditions are mentioned. Yehuda Shoenfeld is the Head of autoimmunity-network.com/ and you can hear him here: youtube.com/watch?v=iM5B6EA...(Not working as expected?)

He publishes regularly in LUPUS: An International Journal. Dr Graham RV Hughes is the Editor and is a world authority on Lupus. The antiphospholipid antibody (Hughes) syndrome is named after him.

The article is here: israel21c.org/headlines/can...

Let me know what you think.

With good wishes,

Ros

[Fighting in reply to lupus-support1]

What he says makes sense. The clinic model he uses sounds as though it would be more useful than needing to visit a specialist, who seems to operate in isolation.

[milkwoman in reply to lupus-support1]

Intriguing! I went to the website listed in the article and the Clinical Timeline shows that by 2018 -2019 there *could* be trials in the US. Very interesting. and hopeful!

[Fighting]

Interesting, I wonder if the rheumies separate themselves into schools of thought with some entirely against this approach and others for.

[lupus-support1 Administrator in reply to Fighting]

In terms of lupus, the main journal is LUPUS: An International Journal whose Editor is Dr Graham RV Hughes (UK). However, there is an international team of Editors, the majority of whom are US. Lupus experts are throughout the world but not in every country. I was told that the 3 major countries in terms of research are the UK, US and Israel.

There are consultant rheumatologists who have never treated lupus patients. When I was at St Thomas Hospital, London there was a new Senior Registrar (the level before consultant) who told me he was doing a 6 month rotation there because in all his training (by this time probably 10 years), he had not treated lupus patients! He went onto become a Consultant rheumatologist at another London hospital - he was an excellent clinician, someone who, like Dr Hughes, listens and treats patients with respect.

I do know some of the researchers in autoimmunity in London and they are working very hard but they admit they know little about how autoimmunity works. They do not understand immunoglobulins and why they are affected in some patients with lupus. Some patients have kidney involvement, other do not - why? This is why lupus is so hard because it affects people differently and doctors do not understand why.

Some countries are very poorly served and indeed I have had enquiries from all over the world because lupus experts do not exist in certain countries. According to Dr Daniel Wallace (US), he believes that if lupus was a predominantly male condition, it would be better known and better funded and better researched.

Be well!

Ros