No meds no symptoms

[Sunshine634]

I was told a week ago to stop all my medication due to a chest infection and WBC being too low. I've been off my hydroxychloroquine and methotrexate for over a week now and weirdly my joints and swelling has been the best it's been for over 2 years.

I feel perplexed has a 2 year flare just finished or am I actually on the wrong medication? I'm not moaning I feel brilliant. But conflicted my next rheumatology appointment is at the end of the month and also meant to start biological therapy 29th but right now I don't think I need it.

Has anyone else experienced this?

[soul22]

I'd bare on side caution,Though no swelling less pain doesn't mean at cellular level lupus is doing or not trying to do damage.

Hydroxychlorquine doesn't need be stopped unless can't eat.

It's no immune suppression drug,it's the one that works at cellular level to reduce bad antibodies that multiply causing say organ damage, inflammation flares.

Hope you feel better soon from chest infection

You could ask rheumatologist to do antibody blood tests inflammation markers.

Hope you continue feeling good I did go into remission twice since I was 17 now 52

[Sunshine634 in reply to soul22]

Thank you, great info - thanks for taking the time to reply!

I have bloods booked for Monday ill see what they say! Xx

[soul22 in reply to Sunshine634]

Your very welcome,I'm not a Dr but do seem have memory right sort tests had lupus since 17 learning still.

All best

[StriatedCaracara]

Maybe your immune system is concentrating on fighting an infection.

Also, not sure why you were

advised to come off hydroxychloroquine. It does not affect blood counts or ability to fight infection.

It can take 6 months for hydroxychloroquine level to build up and so it won't disappear immediately.

You still have most of that hydroxychloroquine in your body.

Some people found autoimmune symptoms were not as bad, whilst having a covid infection. So I guess with other infections the same can happen.

It would be interesting to gather thoughts on this.

[Betty909090]

Hi,

Bear in mind that lupus is complicated!

The disease can go into remission. 👆👍

Can flare but there are different grades and degrees (mild to severe) of “flare”. Apparently my “ lupus nephritis is in remission” according to a consultant rheumatologist.👏

Methotrexate is an immunosuppressant and it makes sense to change the dosage if you are in the throes of fighting an infection?! It may be different if you’re on MMF?

Had covid severely for three weeks over Xmas. Had antivirals but still stayed on MMF same dosage. Fully? recovered now.

Consider that biological therapies will involve 2/3 weekly hospital appts being strapped to an intravenous drip for 2-4 hours with monoclonal antibodies dripped into you.

Some find this treatment too invasive and imposing but…?🥹🙄👆

I would myself be very happy in remission but the low white blood cell count is of concern because biological therapy would make it even lower.

[Paprika60]

Gosh! I hope you are in remission and it lasts for a long time. This is all that I wish for!!

I hate being on hydroxy as I fear it has weakened my body ever since and also caused the brain fog. Hope you get over your infection and things stay well for you.

[Sunshine634 in reply to Paprika60]

So far so good chesty cough remains and bloods today show the old white blood cells are back up. Joints are stiff but not sore and no swelling ill see what rheumatology say

And now I can because they are not swollen ill cross my fingers for remission for all xx