New Drug for Lupus Sufferers

[Maureenpearl]

My friend send me this link about a new drug for lupus. What do you all think?

mol.im/a/7876813

[suzannah16]

It's a nice idea, I hope it helps at least some of us.

[fabwheelie]

I think we may be getting a lot of posts since this was in the news

Here's my reply to someone else's post about the same thing on this health unlocked

I'd be interested what others think. I'd seen a few posts in Lupus Facebook groups about this

Here's a useful link about it as reported at American College of Rheumatology meeting. The first phase trials didn't "meet endpoints" but subsequent trials look promising ( possibly different dosage in first trials). It appears from this good for overall disease activity and reducing steroid use as well as the effects on skin rashes ,( so possibly good for SLE as well as discoid lupus).

acrabstracts.org/abstract/e...

I've not personally had chance to fully read up about this or examine the scientific data, but hopefully it is as good news as the article suggests.

[Maureenpearl in reply to fabwheelie]

Hoping it won’t be too expensive.

[fabwheelie in reply to Maureenpearl]

I think it probably will be and likely similar to things like the guidelines as to whether patients get treatment with other "biological Lupus medication" such as Belimumab (Benlysta) However if it's even just as good as suggested on the skin symptoms it's possible the costs / benefit to patients will "win over" as it would probably save a lot of dermatology time etc if it works well on the skin ( especially if it does prevent scaring). However general SLE may be more "tricky" to get a good "cost/ benefit" arguement

[Maureenpearl in reply to fabwheelie]

I have Rituximab and had to get funding to have it which took three years of begging to get. I’m having it because the lupus has damaged my lungs. So far the damage isn’t spreading and it has helped some of the other symptoms such as Raynaud.

Praying those with skin issues will be allowed to receive this new drug.