Lupus sle, but now lupus has added serositis to t... - LUPUS UK

LUPUS UK

32,210 members28,554 posts

Lupus sle, but now lupus has added serositis to the mix also any information welcome on it.

willowwag profile image
8 Replies

On meds due to my lupus sle, but consultant has now informed me my lupus is also adding in serositus to the mix, shes given me abit of information about it but does anyone else suffer from this...

Written by
willowwag profile image
willowwag
To view profiles and participate in discussions please or .
Read more about...
8 Replies
anbuma profile image
anbuma

what is serositis?not heard of it before.

Purpletop profile image
Purpletop

Serositis is inflammation of the heart lining, lung lining, abdomen lining and the lining of the abdominal organs. Which one did your doctor said you have? Many lupus sufferers have this at some point, most usually pericarditis (inflammation of the lining of the heart), or pleurisy (inflammation of the lining of the lungs). As lupus causes inflammation, serositis is not unusual.

The good news is that if the lupus is brought under control, so is the serositis.

anbuma profile image
anbuma

went to dr today and told him my symtpoms are of lupus but he wouldn't accept it saying blood test says otherwise.they will not take symtpoms into account.going to write him a letter now saying how I cannot cope with things anymore and with all cases of other peoples ' experiences (on here)and maybe then he will believe me.i need to be here for my dogs and they cannot cope with me being upset.i ahev another appt booked for December (for a review)but spoke with him about it today but still going to keep that appt.

willowwag profile image
willowwag

Hi purpletop ive been in a flare for as long as i can remember, the rhumt seems to think its now adding serositis mine is swelling of the abdominal lining and abdominal organs, i thought lupus was bad enough on its own but crushing pain and vomiting nearly everyday and still trying to work is totally a up hill battle..going to start a round of steriod injections on monday and hopefully have some news...

Purpletop profile image
Purpletop

I understand, mine is liver inflammation, took me few years to bring it under control and I'm constantly worrying about it with all these drugs going into the liver. I used to have pain as well, nothing was touching it, used to stay home with hot water bottle on it and drinking dandelion tea, no chance of going to work like that. Good luck - once you get the right treatment and the lupus responds to it, the inflammation will slowly calm down and pain goes away. Hang in there.

Eagle41 profile image
Eagle41 in reply toPurpletop

I have also had serositis of liver (among other organs). What were your symptoms? I had pain over liver that was referred to back and shoulder. (And is wasn't gall bladder. Had that removed years ago. Also had ercp to open up blockage in past year.)

Anyway my pain was worse with food so I lived off juices, smoothies and soups. I had severe nausea as well. I know the post is little old but look forward to nearing from you.

Purpletop profile image
Purpletop in reply toEagle41

Same as you in terms of pain right side and back but no nausea. But steady pain, not dependant on food. High GGT too. I went on an antiinflammatory diet for a year and all improved but lately I've eaten too much fats and sugars and I'm starting to get the symptoms again. I'm in a flare now as well and that isn't helping. A calm lupus helps a lot. What meds are you on?

Eagle41 profile image
Eagle41

Plaquenil and cellcept. My pain and eating issues only went away when I was on high dose prednisone for 8 months. Now off prednisone for 2 months and the pain and nausea is coming back. The pain is constant but worse after solids. They couldn't figure out what mine was until I landed in the hospital last year. By then serositis was so bad it actually showed up on scans. Heart, lungs, liver and intestines. I probably need to go back on steroids but I am finally losing weight! I have been eating paleo but have recently started a paleo autoimmune protocol. (Basically an anti inflammatory diet). Hoping it will work. I am following the one by Sarah Ballantyne. Hope you are doing ok. (Sorry for the delay)

Not what you're looking for?

You may also like...

Lupus SLE on steroids, but in group 9 for COVID vaccination?

Hoping someone here can help me. I’m feeling really fed up! I’ve had SLE for 10 years, I’m on a v...
panther50 profile image

Please welcome Chanpreet to the LUPUS UK team

Hi everybody, @[511252] has joined the LUPUS UK National Office team this week as our new Appeals...
Paul_Howard profile image
Partner

Please welcome Fabienne to the LUPUS UK team

Hi everybody, @[513825] has joined the LUPUS UK National Office team this week as our new...
Paul_Howard profile image
Partner

My partner has lupus but trying to conceive

My partner was diagnosed.with lupus in 2009 and has being in hospital twice once with brain...

Any advice on what tests to determine lupus?

Hello to you reading this. I have been on a long journey to find a diagnosis for what I was...
Aura13 profile image