Hei,
Some time since my last and maybe first post. I have a 30 year old daughter with Lupus. ( and two other grown up kids with ME )
Now there have been some talking about the type of Lupus....the reumatolog think she has CNS Lupus.....in the head I mean. Is there somebody here who has this kind of Lupus? It seems like there is difficult to prove this type....and the hospital has maybe never seen it before...som it must be rare.
Spans, I know nothing of this type of Lupus but I wanted to let you know you are heard. I am so very sorry that your 3 daughters have chronic illnesses. I can’t even imagine. You must be the Mother of the Year!! 🙏 May I send you my best and hope you get the answers you seek, very soon.
Thank you for the answer. I am not the only mom with ME in all the children ( its 2 daughters and one son ...and the eldest with lupus have ME too. ) I know there is at least 15 families in my country ( it's a small country ) But still I think it not happend often. And I don't know if there is a link between ME and Lupus. But I know that somebody calls ME for seronegative Lupus. So who knows......
😍 THANKS...V interesting! My infant onset primary lupus SLE + all my overlapping secondary AIDs (autoimmune diseases) are seronegative ....but I do meet official NHS diagnostic criteria for SLE & co
I’ve always thought LOTS of my chronic issues seem very similar to symptoms of ME’s.
My consultants tell me I’m seronegative because I have early onset PID (Primary Immunodeficiency Disease) simultaneous with all my AIDs. I do wonder whether immunologic tests on all seronegative cases should include tests giving a closer look for PIDs, ie check all immunoglobulin levels (my PID is panhypogammaglobulinaemia which is chronic immunoglobulin G, A, M deficiency...these are thought to be the most influential immunoglobulins re antibody production, especially IgG) 🤔
For what it’s worth:
the clinicians leading my case are Rheumatology + Immunology + gastroenterology consultants, but I also am in care with Eye clinic, dermatology, gynaecology, ENT.....all my consultants agree re my comorbidities. I do have early onset chronic neuro-cerebral manifestations which, so far 🤞, are responding positively to my SLE + PID Meds t’s taken 66 years to gradually achieve this consensus from the UK health establishment... so am V MUCH feeling for you
Hope you’ll keep us posted 🍀❤️🍀❤️ Coco
Interesting ...it's so much it can be...and it can be more than one thing. Can I ask what kind of meds you get?
The combined therapy treatment meds I take have accumulated over the years via trial & error . Mostly my clinicians have been very clever about this process of figuring out how to adequately medicate my mix...this combo is adjusted when I have infections, surgery etc etc. All my meds help damp down my neuro-cerebral issues.
Daily for SLE: hydroxychlorquine + prednisolone + mycophenolate + amitriptyline + various prescription topicals
Daily for PID: coamoxiclav.
3-weekly for PID: IV immunoglobulin G replacement therapy
I am on various other topicals for other aspects of both AID & PID...and v specialist oral meds for my gastro issues etc etc
Hope that’s useful to you 🤞🍀❤️
I hear Barnclown's post loud and clear re. sero-negative blood results and the overlap with M.E. symptoms. I was diagnosed with M.E. for years. I have not been told this was an incorrect diagnosis, but I have recently been diagnosed with a lupus-like auto immune syndrome ( urticarial vasculitis syndrome) when I tested positive for anti-C1q antibody. It was a fight to get this far because patients with ME generally are labelled and not extensively tested once that label has been applied. I have lots of neurological symptoms and a brain MRI has revealed areas of white matter hyperintensities in my frontal cortex which I am told is not MS. However, I have not been told what they are. My understanding is that lupus can attack the central nervous system and can leave white matter hyperintensities of the type I have. But I have had zero luck so far finding out whether this is what's actually going on with me. I will post and update if I have further information or progress getting this cleared up. I do have concerns that there are lots of other people out there with a diagnosis of ME who may have other conditions, such as lupus, but whose bloods have tested negatively. I hope that your children can get all the tests and retests they need to make sure they do not fall into that category of missed patient. Good luck. None of these autoimmune diseases are easy, but ME patients seem to suffer an undeserved, disproportionate and unremitting degree of medical neglect, along with misunderstanding generally of just how severely unwell they are. 💐
🤩 👍 WELL SAID 👏👏👏👏👏👏❤️🍀
Yes, ME patients have been treated badly for years....you have to tolerate so much from the health care and everywhere around. But the bloodtest can suddenly be positive for something else. And then there will be a fight again because you have ME. My eldest daughter had no good experience with the experts on the hospital. When she couldn't walk and nearly lost her breath...then in the end they said it's Lupus and she got prednisolon for some weeks...but she don't know how her next meeting will be. Her heart where not ok too. And she had hallusinations....I don't know where it will end.
Don't give up. It's so disheartening, but you never know when a breakthrough, big or small, is just around the corner. I have tried feeding back my experience of having ME and then getting a vasculitis diagnosis to an ME charity in the hope that they can suggest this is one of many conditions tested for and ruled out before patients are diagnosed with ME. I have specifically asked that it is fed back to the panel sitting to decide how the NICE guidelines are redrawn for ME this year. I'm guessing most people know about the faulty PACE trials and how they dangerously misinformed current treatment recommendations for ME. I haven't got very far so far, and it has been suggested that the NHS would not agree to a load of expensive immune system tests being routinely run as part of the workup to exclude other conditions. Couldn't believe I heard that from a so-called advocate for ME patients! Talk about giving up before you have tried. Also, these tests (blood tests) are cheap compared to the life- long disability and associated inability to earn money that patients suffer. It is a complete false economy to not test for these diseases up front before further damage and disability ensues. Once my energy picks up, I will have another think about how to petition those in charge, but it's exhausting to have to continually fight to be heard.
I totally agree with you and I certainly believe that more research is necessary to explore possible links between ME and Lupus (and similar AI disorders)
Hi spanskmargeritt,
We offer a guide specifically for GPs on our website. One section of the guide focuses on central nervous system involvement in lupus patients, here is the link to this section - lupusuk.org.uk/medical/gp-g.... Your daughter may benefit from printing this for next appointment as well as sending it to her doctor if needed.
Please keep us updated. All the best!
Thank you so much! I will give it to her at once. She has a lot of symptoms again because she had to take less prednisolon for some weeks....
Brand new on site. First post ive ever replied to! I have had ME for 20 years as have both my sisters. In the last couple of years year I have managed to be seen privately by rheumy who confirmed autoimmune markers, said UCTD and also antiphospholipid antibodies so Hughes syndrome. No idea if that means I still have ME according to drs or just this so am fascinated by the seronegative Lupus idea and will look in to it. The travesty to ME patients is hideous. I really hope you get some support and help and good luck unlocking the challenges for you.
Welcome! Twenty years is so long. That is heart-breaking. You sound a lot like me. I have UCTD with anti-cardiolipin antibodies.
Feel free to message me any time.
Maybe your fatigue was always UCTD.
Xk
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