New lupus medication in Phase 2 trials

[PMRpro]

medicalnewstoday.com/articl...

I wondered if any of you were aware of this - sounds promising,

[suzannah16]

interesting, wonder if it helps with fatigue and memory or just organs.

[PMRpro in reply to suzannah16]

If it works for fatigue - can I have a go too!!!!

[suzannah16 in reply to PMRpro]

of all the lupus things fatigue would be my number one choice for a cure. I can cope with the rest [sort of]

[PMRpro in reply to suzannah16]

Same with PMR - it really is te fatigue that messes with everything you want to do. I lived with the pain for 5 years, wasn't nice but it was better than the fatigue

[Tanitani in reply to suzannah16]

suzannah16 did you ever think the fatigue comes from prednisone withdrawal sy drome instead of lupus? Im wondering if people like me that dont show inflamatory markers are fatigued from prednisone and prednisone withdrawal syndrome instead of lupus

[PMRpro in reply to Tanitani]

Pred at any dose can cause fatigue in some patients - lots of people (including doctors) think it causes high energy and makes you feel great but not always. The fatigue of reducing the dose can be minimised by each step down being no more than 10% of the current dose. The real fatigue of reducing pred comes below 10mg when you get to the realm of the adrenal glands having to take up their duties again as fatigue is probably the most common symptoms of drenal insufficiency. Again, small steps and not too often is the only way there. And patience. Unfortunately - most people lack that essential ingredient!

[EG74 in reply to PMRpro]

I have fatigue and I only take HCQ and no steroids. I thought rheumatologist prescribed HCQ to protect organs and to help with fatigue?

[PMRpro in reply to EG74]

To my knowledge nothing really helps with the fatigue of any autoimmune disease, I don't know anything about HCQ and lupus but most drugs used in a/i disease are to try and limit the long term damage done to the body.

[Betty909090 in reply to PMRpro]

Pred also raises blood glucose levels. This is also associated with fatigue./sleepiness.

[suzannah16 in reply to Tanitani]

I've not had any steroids for 20 years or more but when I did have them [frequently] I felt hyper energetic.

[PMRpro in reply to suzannah16]

Wish I did!!!!!

[MusicalFurbaby]

Wow, promising indeed!

[LalSD]

This is brilliant news! Thank you..

[Tanitani]

Im wondering why they dont fast track drugs like this. Estimated study completion is 2026. Then who knows how long for the next phase....

[PMRpro in reply to Tanitani]

Because of lack of guaranteed funding - the Covid vaccine is the example of what can be done when money is there, ready and waiting. No waiting weeks, months, for approval of the study results.

Read Vaxxers by Sarah Gilbert and Catherine Green - they describe the usual procedure and the Covid procedure to show how the vaccine could be brought to market so quickly. It is all about money and desire ...

[Tanitani in reply to PMRpro]

There is money going to all kinds of lupus research. I dont know why they just dont pick something most promissing and speed it up instead of 100 smaller studies. I just read about grants for random research such as gut bacteria and lupus and some genetic research when there are already so much research but no path to drugs.

[PMRpro in reply to Tanitani]

Doubt they have the millions on offer that are involved in drug development.

[Tanitani in reply to PMRpro]

For example these 3 awards of $9 million went to random research. lupusresearch.org/for-resea...

[PMRpro in reply to Tanitani]

Oh sorry - thought you were taking about LupusUK. But $9 million is a drop in the drug development role. How do you decide which potential drug is the one to back? Despite the vilification of the pharmaceutical industry they do risk a lot to get those massive profits in the end. You can't identify potential drugs without knowing the underlying causes of diseases - basic research. And basic research isn't glamorous nor does it make big money at the end

[Betty909090]

Thanks for posting!Thanks for the link.

Interesting new research but 🧐,

I’ve looked at the mechanism of action for this new pill:

“…Afimetoran inhibits the function of cellular proteins TLR7 and TLR8.

TLR7 and TLR8 trigger the immune system, usually in response to foreign RNA. However, in people with lupus, they activate the immune system when they mistake the individual’s own RNA as a threat, causing a range of lupus symptoms.

“It is well-documented, said Roy, “that aberrant activation of TLR7/8 is potentially pathogenic and linked to the progression of certain autoimmune diseases such as lupus. Prior efforts to develop inhibitors of TLR7/8 have been largely unsuccessful because of the challenge of producing a small-molecule inhibitor for these difficult targets.”

Questions:

* What are the side effects?🧐

* What if inhibition of TLR7/8 is not perfect and other parts of the immune system cells are affected?🧐

[PMRpro in reply to Betty909090]

The clinical trials will establish answers to that - it all takes time and it isn't until you use a drug in large numbers of patients after it is shown to be fundamentally safe in smalll numbers you won't know the side effects - that even continues to Phase 4 studies after it is launched onto the market.