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Infusion question

My rheumatologist said last week that if the methotrexate 20mg weekly, plaquinil 400mg daily and 60mg prednisone (taper attempt number 3 hopefully mid April ) doesn't work we may have to start thinking about infusions. Very scary and I had a horrible feeling similar to when he told me I had sle in the first place.

However looking online it seems it might be more of a positive thing - with even less side effects compared to the tablets. And that Infusions aren't given as a first call due to hassle, cost, reactions and approval opposing to them actually being less effective than tablets - which I didn't realise.

Would like to hear of anyone's experience or knowledge with infusions designed to help lupus. I've looked up benlysta but unsure if the NHS even offers this anymore? What other ones are generally offered first in the UK? Really really keen to hear about this so thanks for replying in advice! Xxxx

Edit: and actually I'm Ana negative, so don't know if I would qualify for an infusion like benlysta. Hmmmm, I'm maybe just confusing myself haha. I find it helpful to educate myself about things though especially if it was for a positive outcome eventually.

2 Replies

Would not be benlysta - it is not licenced here for lupus ( though if your doctor makes a strong enough case you can have it, I believe).

More likely to be cyclophosphamide, which is unpleasant, to say the least, but it works (and some people cope way better than others). What ever it is though - good luck!


Hi Scoofiecoo

I have recently been told I may need cyclophosphamide infusion as treatment for lupus kidney damage. I also like to be prepared, so I did a bit of research. The other ones I came up with were...

Rhituximab, see NHS choices website, lupus treatment. Although not licensed in the UK, I have read about people receiving this treatment. You could check out the 'Lupus in Flight' Blog.

IV immunoglobulins, which are taken from plasma, & Cyclosporin A are the others I found mentioned on Lupus UK website, but nothing really about them. Wikipedia is helpful with meds, but can be a bit scary if you read all the possible side effects. So I am steering clear of this section unless I definitely require one of these drugs.

I think is great that you are thinking about these drugs in a positive way. Your rheumy will not prescribe them unless you really need them. Yes they are toxic, but so is lupus. We all have to weigh up the pros & cons for ourselves when it comes to medication.

All the very best. X


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