I am puzzled - immunosuppressants or not?

[bleeny]

I was diagnosed with SLE 6 months ago by rheumatologist and prescribed hydroxychloroquine. I saw the rheumy nurse a couple of weeks ago and she said the consultant wants to put me on Azathioprine after I have seen the liver specialist for probable autoimmune hepatitis - he doesn't want to 'muddy the waters' just yet. What I am puzzled about is that it seems I have mild lupus although my dsdna is off the scale. I don't have many symptoms. I have read on this forum that azathioprine should only be prescribed if lupus is moderate to severe. I certainly don't want to be on immunosuppressants if I don't need to be. Why would he be keen to do so?

[Freckle1000]

If there's a small possibility that you have autoimmune hepatitis - then you're Doctors have to consider the possibility that right now your lupus is flaring a bit more than usual. It's good that they're thinking in terms of more medication as they're wanting to prevent potential problems just in case.

I had autoimmune hepatitis and felt pretty well with the initial symptoms - until all of a sudden I wasn't.

Always follow medical advice on this stuff and take the medications.

ps. We're all different and have different treatment needs but for me (and my SLE - that's been fairly aggressive) - the perfect anti ds - DNA is zero. Next time you see you're Rheumatologist - or a Lupus specialist - you could ask them about this.

[whisperit]

Hello bleeny

As Freckle says, the likely reason is that although your autoimmune activity might be low in general, if there is evidence of organ involvement, clinicians will tend to treat more aggressively to head off permanent organ damage. This is why the BSR guidance advises treatment with low dose steroids and HCQ or methotrexate only "for the management of mild non-organ threatening disease".

academic.oup.com/rheumatolo...

One of the risks of inadequate treatment in autoimmune hepatitis is long term sclerosis (scarring), which is obviously better avoided. AZA is cited as the drug of choice in AI hepatitis by the British Liver Trust, with other immune suppressants an option if AZA is not tolerated.

That's my best guess anyway. but do ask these questions of your rheumy. It's important you feel confidence in these decisions. x

[NewEngland3 in reply to whisperit]

Whisperit-thank you for the guidelines!

[bleeny in reply to whisperit]

Yes - thank you!

[Freckle1000 in reply to whisperit]

'Yes - thankyou so much for those guidelines !!!! '

It will help me argue with Doctors and be more aware of my treatment rights. Also some alternative treatments I didn't know about - very handy.

Mega mega uba thanks. 🙂

I will now stalk you online (follow)

: )

[whisperit in reply to Freckle1000]

thats sounds concerning (the argument not the following!)

Post about it if you want ideas from ppl here? x

[miccika1]

If there is organ involved usually an. Immunosupressant is prescribed

[Hamptons]

There is a big push away from hydroxychloroquine and onto the low dosage chemo drugs. It is because of the increased NICE guidelines re hydroxychloroquine. It has to be what works for you.

[bleeny in reply to Hamptons]

OK - that's interesting thank you.