drug induced lupus

[Denny39]

Hi,

My husband has drug induced lupus from inflixmab infusions which he was having for Chrohns disease. He has been in hospital twice from the lupus and they suspected the lupus was causing pericarditis. They also suspect he has psoriatic arthritis.

He has been on steroids to control the drug induced lupus but every time he weans down to one 5mcg tablet he is in agony and feels like he’s on deaths door, with excruciating joint pain and debilitating fatigue. He then has to get back in touch with the consultant or GP to prescribe more steroids to keep him ok ish. The consultant keeps telling him he can’t be on steroids long term but he feels his body won’t let him stop them or something bad is going to happen.

Has anyone felt like this when weaning off steroids and is there any other drug anyone would recommend trying so he can try in the future to come off steroids??

Thanks

[avionne]

hi i had same without steroids i felt like i was dying with pain. i started methotrexate now and have improved

[Denny39 in reply to avionne]

Is your lupus drug induced?

My husband has been offered that drug but he is refusing to try it as the consultant said he would need to be on it for 5 years and he is thinking the drug I induced lupus might clear before then.

I am not so sure if though as I heard autoimmune diseases run in packs.

[Spanielmadlady]

Hi yes you are more likely to other Ai illness if you have one. I have SLE (not drug induced) which affects my lungs and as a result I've been steroid dependent for 10 years now. I can't get below 7mgs without them flaring. I struggle with all steroid drops.you must drop them very very slowly ideally 1mg a month.once you get below about 5mgs your adrenal gland has to pull its socks up and start to work again.I've been on mmf for 4 years now in an attempt to get off the steroids without success. The general consensus now is I need a maintenance dose of below 10mgs most probably for life although they are considering biologics.Kind regards SML xx

[Haired]

Hi I have drug induced Lupus caused by commonPPI (Heliocobacter) taken for gastro infection back in 2016. My GP said he never had patient with reaction before. It caused chronic skin rash / sores. Eventually Dermatologist and Rheumatologist did skin biopsies and diagnosed Lupus and other related problems stomach , mouth ulcers , bowel, Raynards etc

I was medication sensitive so it took a lot of trial and error to find something to control it. ( tried Plaquenil , Methotexrate, Imuran) I am on 6 monthly Rituximab Infusions which along with 5 mg Steroid tablet and Mepacrine daily plus 1600 Vit D, folic acid, Asprin and a blood P medication ( Started last year)

I was not happy taking Steroids but every time rheumatologist/dermatologist, reduced steroid below five skin broke out again burning pain started again. Consultants do not like to prescribe maintenance steroids, but unfortunately along with other medication it seems to be the only way to control it.. it has taken me a long time to come to terms with it, but hopefully somewhere down the road I can manage to give them up.

Unfortunately, what medication works for one person may not work for another it really is trial and error and having consultant who listens is important. The fatigue is a big thing and I really find that difficult as you never know, day-to-day how you will feel. Looking on the bright side I do not have huge joint pain like yourself. Heading into brighter days the photosensitivity has gotten much worse. So summer not a good time.

Consultant said you sometimes find other family members with immune disorders. My brother has MS and sister with Ulcerative colitis. I have a friend who’s son has Psoriatic arthritis since he was in his 20’s took a while but is self injecting weekly and pain free.

Sorry for long reply first time found someone with drug induced Lupus. Best of luck with your search for right medication for you.

[posthinking01]

Hi there so very very sorry your hubby is experiencing this - I have Lupus plus Addison’s etc. and on steroids for life - if he is suffering so badly with trying to come down then I believe he is at risk of inflammation taking a hold on his complex health issues - I recently developed celiac issues - gluten intolerance after having a bowel bleed - I had to raise my steroids by 2 mg to feel well - I looked so ill as my body was struggling to fight the illness/inflammation - if steroids are keeping stable a complex medical condition then I don’t agree with the medical paranoia about steroids - yes they can complicate things if you get a cold etc. you have to follow ‘the 3 day sick rules’ - tell your hubby what he is experiencing is low adrenal function - even the joint pains - the feeling like he is dying is a clue - can you please asked to be referred to an endocrinologist who can see what his adrenals are doing - as it looks like he needs steroids not to be told to come off them at least not for now - a lot of lupus patients have to be on steroids for life - if you are deficient in steroid production you don’t put on weight etc. as you are only putting back what you are deficient in - hope this helps !

[Denny39 in reply to posthinking01]

Hi, he has definitely gained weight.

I’ve mentioned to him about his adrenals and yes he does feel like he’s dying when he tries to stop them. He also had pericarditis before he was on the steroids from the lupus and the steroids is keeping that at bay.

I see endocrinology myself for thyroid problems so I know how bad adrenal issues can be.

[posthinking01 in reply to Denny39]

Has he had his thyroid checked ? Poor thing - you must be frantic - is he able to work ? What he was actually experiencing was almost an adrenal crisis - my lupus virtually went into remission when I finally got onto thyroid meds - he really needs some endo work undertaken in my opinion - if they say normal blood test result but he is at bottom of range ie I was 12 range 10 to 20 but I had over 100 symptoms- I still have lupus but nothing like the life threatening scenario I once had !

[posthinking01 in reply to Denny39]

Just for information - the human body produces cortisol amount of 20 mg per day to keep us alive and deal with all life giving eventualities that may be needed - an artificial steroid of 5 mg of Pred. is 5 x 4 of hydrocortisone = 20 mg - so when he is trying to go down below 5 mg if he has adrenal insufficiency he is actually going beyond that which the body needs ! In my opinion he needs to get his adrenals checked out to avoid going into a crisis by the medical profession keep telling him to reduce his steroids. He may be able to at some point later on but not at the moment IMO.