Over the weekend many of you may have seen an article published by the Daily Mail about the breakthrough potential new lupus treatment, anifrolumab. I noticed a couple of members of this community had shared the news.
Whilst we are very excited about this potential new treatment option, we felt that the article was too sensationalist and didn't necessarily answer all the questions people had.
With the kind help of Dr Ed Vital, we have now published our own article about this potential new lupus treatment which you can read on our website at lupusuk.org.uk/anifrolumab/
Written by
Paul_Howard
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Thank you for this clear and concise summary of the drug. I found Dr. Vital’s summary helpful in understanding the status of lupus medications generally - how they apply and can be limited to various aspects of the disease. As in the US, cost is figured into the equation.
I'm not aware of any clinical evidence proving that people with lupus have additional protection against certain common infectious diseases. I have heard Prof Hughes speak of his anecdotal evidence for this and some patients agree with the idea.
But I believe in one (?) of the trials of this new drug done by - ( Dr Eric Moreland Monash Medical Centre - Melbourne ) some participants became more vaulnerable to some infections. He's talking up his work here ( in Australia ) while possibly (?) understating some of the flaws in the process & results.
His argument for some of the - ' deficits ? in his research - is because - all Lupus sufferers are different........its thus technically impossible to have the clean cut - precision results as with the more black and white data ordinarily required for research. ( the very same arguement that can be used to diminish our rights as patients at ground level )
Hard to know ? - but I hope he/ they ? are on to something. He 🙄😁 - certainly gives the impression that it's a breakthrough.
Thankyou for posting about this Paul. Its hard to decipher what it all means.
This is spot on. I don't get colds and I mention this to every new Rheumatologist - all of whom show surprise at this. I get the more opportunistic viruses - but not colds.
I rarely got sick during my adulthood until 7 years ago when I got the mother of all flu strains. I have had one case of flu since then but after that first episode I started becoming sick with symptoms related to my eventual diagnosis of mixed connective tissue disease. I have wondered if there was a connection.
Often biologics are administered through a slow drip initially to ensure no adverse reaction than often the following treatments might be in an injection followed by a short wait to ensure again no adverse reactions. Your mileage may very for all protocol should be patient taylored.
Sorry Roarah - But I believe medications have to be tailored to the illness - not the desires or comfort of the patient. Specialists made this mistake with me once when I was buckling under the weight of temporary high doses - and me complaining too well ......they reduced the doses I was on and the illness reared up and almost killed me. I ended up staggering around half dead, utterly confused as to what was going on because I became so sick - and looking for a new specialist. Luckily I found a good one who instantly understood what had happened - wouldn't pander to me - upped the doses even higher than they were when I complained - and she saved my life.
I'm now on easily tolerated low maintenance doses.
Until they come up with alternatives - this is the path we have to take to stay well.
I never mentioned patient's comfort. I mentioned hopeful protocol and specifically state tailored to each patient's reactions not sure How you miss read that.
I believe that this treatment would be administered monthly at hospital with a relatively quick (half hour) infusion. However, there are rumours that a self-administered sub-cutaneous injection may also be developed. Belimumab has now been developed this way and it is available in the USA, but GSK haven't yet applied for licensing of this in the UK.
It is hopeful for me to read at the end of a serious "struggle" discouraging day . . .if not available for me . . .maybe for others following on.
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