Benlysta - what do you know? - Hughes Syndrome A...

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Benlysta - what do you know?

Nat1969 profile image
5 Replies

I understand there is a new drug available for auto-immune diseases called Benlysta and it's only available in the US. Does anyone know more information on this and if it will be available in the UK?

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Nat1969 profile image
Nat1969
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5 Replies
jessielou profile image
jessielou

Hi Nat

welcome n glad you found us.

From what I've read so far there have been very good reports on this as a lupus treatment in the states. I don't know where its at with approval in the UK, i think it could take a while and pcts not likely to want to prescribe it, because of costs.

I don't know that it will help with aps, maybe one day...

Hopefully others will be along with more info.

I hope you havin a better today.

Love n gentle hugs sgeena xxxxxxxxxxxxxx :-) :-) :-)

77tiger05 profile image
77tiger05

I live in North Carolina USA, and would think twice about taking Benlysta. You need to Google this and read risks & side effects. I don't trust the FDA in US at all and you should always check into these new drugs. Old ones with tried and true testing work better than anything new. My point is I have become allergic to every new antibiotic on the market yet can take penicillin and other very old drugs just fine. There's something to be said for technology, sometimes it's better to not mess with so much. I wish you luck in your findings, just remember to be very careful.

paddyandlin profile image
paddyandlin

Hi guys

In the UK this is a long way off from.being used it is still in early stages so no approval for a while I am afraid

Paddy

Yes, what everyone else says. Benlysta is a drug used to treat lupus but although it has been approved in the US, NICE in the UK recently rejected it.

pamcelis profile image
pamcelis

Hi Nat

Im from Mexico and actually starting on benlysta treatment on tuesday.. I have to say im kind of nervous because of all the bad things i read about benlysta. I had to take about 1000mg of steroids each day as well as a treatment with mabthera (rituximab)...they all stopped working so basically thats my only option. My antibodies tend to destroy my blood which gets really serious in a short period of time. I'll be telling you how im doing in case any of you needs to know about the treatment.

Pam

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