My wife has SLE plus a host of other nasty stuff but recently we had IGg sub class bloods done which revealed :
Low : IGg 3 and low IGg 4 the rest normal
Low but just normal IGg IGm IGA
She has always had low c3 and high c4 complements.
Grateful for any thoughts or suggestions
Hello again jimbo
As much as another can, i feel as if i understand your concern. The important thing is that Pooh Bear’s consultants realise her manifestations + these results are significant + have shared them with you. i hope investigations into the underlying causes are now being launched. Your support makes a HUGE pos diff to Pooh Bear i’m sure...cause my husband Badger’s HUGELY does to me re my low immunoglobulins
I am diagnosed with simultaneous v early onset Primaries: SLE & PID (Primary Immunodeficiency Disease) + the usual secondaries (sjogrens, small vessel vasculitis etc etc). My PID features chronically low immunoglobulins (Igs). my lead clinicians re my immune dysfunction & connective tissue disorder are immunology & rheumatology. The SLE was recognised years before my PID was finally diagnosed - although i have a history of low Immunoglobulins blood test results from way back before starting daily immunosuppression meds
Several years of Immunology investigations & treatment have now established that my PID is the Common Variable Immunodeficiency Disease (CVID) called Panhypogammaglobulinaemia (my IgG,A,M & my IgG1+2 subsets are chronically (consistently) below normal ref range and my autoimmunity is seronegative). My complement C4 & lymphocytes are below range too.
I’m on a cocktail of daily oral meds for ‘moderate’ lupus (hydroxychloroquine + mycophenolate + prednisolone) + 3 weekly IVIG & daily antibiotics for the immunodeficiency. At 65, all this has me feeling better than i have since childhood (aside from various age-related health hassles)
It’s unusual to have simultaneous AID & PID, but there are a handful here diagnosed with both... LUK & this wonderful forum have helped me lots over many years, and i also attend 2 excellent closed facebook UK forums for PID patients (maybe you know them):
UKPIPS ENGLAND
UK PID PATIENTS
I wonder: have consultants mentioned PID to your Pooh Bear? do you know the UK PID website, cause it has lots of quality info (inc some re IgG subset conditions etc)? Is your wife attending both rheumatology & immunology clinics? What are her clinicians proposing?
🍀🍀🍀🍀 Coco
Coco, thank you so much for your really helpful response. I have made contact with PID and they have been so helpful and following this I searched out an immunologist. I made contact Dr Kumar from Addenbrokes and spoke to his clinic organiser who was absolutely amazing and we are waiting for a response from him once he has looked at all the bloods.
It is strangely reassuring that others like yourself have the same type of symptoms and the same bloods so at least we know its not all in our minds. This is the view of some of the medics who treat Pooh (the bear that is ) unfortunately.
Joan had a gastroscopy on friday which revealed two problems lesions and swelling at the top of stomach into the food pipe and erosion of the bottom part of stomach. This is looking like autoimmune gastritis and probably barretts oesophagus. I said cant you give back barrett his faulty oesophagus and can we have the old pooh bear one back. (I usually get hit by anything to hand at this stage).
Coco you are a tremendous support to so many people on this blog and the advice and support you provide has helped so many including Pooh bear. For this and being so free to share your experiences thank you so so much.
Love from Pooh and jimbo.
OMG...Dr K is my 🌟🌟🌟🌟🌟lead clinician...i ❤️ him...am RELIEVED & GLAD you & PB + Dr K + PID are all collaborating‼️👏👏👏👏👏👏
When i turned 50, gastroscopy diagnosed exactly the same manifestations & conditions in my upper GI tract...gastroenterology took me in hand (domperidone + oesomeprazole daily long term). & i went on a stricter exclusion diet (LOW FODMAP) and we did get things to be less severe. So i am feeling encouraged by this news too 😅👍👍👍👍
THANKS VVVVV MUCH for this news flash 💐💐💐💐, and ❤️🍀❤️🍀❤️🍀 to you both
PS am @ addenbrookes a lot for all sorts of clinics...if you ever feel like meeting up, please send me a private message...maybe we’ll coincide
Coco, thats spooky. PB is treated in colchester, ipswich and Guys but when we are in Addenbrokes we will give you a shout. We are not alone - thanks once again.
Louise -a, She was doing so well until her Rheumy (not a lupus expert) decided that coming off pred would be a good idea without giving anything to replace it. Since that time things have gone from manageable to pains, aches, breathing probs, brain fog (pea souper) rashes, lesions. The gastroscopy was a breakthrough in identifying why her abdomen was so painful and why she has felt so unwell - it looks like autoimmune gastritisis.
Negative ANA blood result twice... Is there a chance it could still be a auto immune disease?
Running alive with livedo! Bloods for aps are negative. It's abit of a strange one I work in London, I am a single mum, I have a dodgey immune system and I want to continue to work. My employers response:>>>>>>
Blisters a sign of auto immune?
Strange blisters/tiny lumps
