Serositis and Hypotension anyone?

[Stills]

Diagnosed with Adult Onset Stills Disease aged 17 in 1979 now 61. Stills manifests as RD for me with many overlaps with RA and Lupus. I have other AI conditions such as Lichen Sclerosis and Enthetitus. Amazingly I’ve been mainly medication free since my mid 20s relying on pain relief and limb splints. The last 15 years have been harder to tolerate and since last November I’ve been more unwell that usual. Things escalated in February after a traumatic time with three deaths in three months within the family. Much testing has gone on but no rheumatologist or specialist involvement. Told at ER I have Orthostatic Hypotension and suspect Serositis maybe the cause. Stills was not taken into consideration at the hospital ER or tested for, I know Stills is rare and largely unknown but they refused to consider AI involvement. Anybody here with hypotension as a result of Serositis?

[SteveSi]

I also have Stills disease from age of 5 (i'm now 69). My story is here

stevesra.blogspot.com/2023/...

Maybe it will help others.

[Stills in reply to SteveSi]

Thank you I will read this shortly

[Stills in reply to SteveSi]

I was tested for celiac disease twice, both negative and both following days when I had eaten bread and cereal. I understand intolerance is not the same as disease of course. I’m vegetarian and eat dairy and lots of seeds, handfuls of them daily and I suspect they are the cause of some gastrointestinal issues although the gastroscopy found nothing alarming . I will research more.

[Stills in reply to SteveSi]

Very very interesting thank you. I’m sure there are other sufferers here who would value reading your story if you would share it as an open post as I suspect many will have missed it within this thread.

In holiday in Thailand earlier this year for 18 days bread was almost excluded from my diet as was milk and I felt a lot better. I’m going to try the AIP diet on your blog.

Thanks

[SteveSi in reply to Stills]

I have tried posting as a main post on various sites, etc. about my experiences and how going GF affects my RA pain but either the post gets removed or I am banned! They think I am some sort of crank who is telling everyone to be GF and it is a miraculous cure! All I am saying is how I made this accidental discovery which worked for me and that it may be worth just trying it if anyone else has any sort of autoimmune disease. However, you need to be extremely careful in what you eat. It must be as natural and unprocessed as possible because you just don't know what substance or additive your immune system might be sensitive to. For instance, I keep finding that many GF shop-bought products also have a small but cumulative affect on me, so now I just avoid all GF-labelled bread/flour substitute products, these have small affect on my joint pain but also seem to affect my mood and seem to cause depression. I still don't know what substance/substances my immune system is sensitive to, and I still am finding out which processed products to avoid!

'Doctors' say that the name 'AutoImmune' implies that your immune system is reacting against it's own body tissues (i.e. for no reason the body attacks itself). My theory is that your immune system is sensitive to something you ingest or come into contact with. This (or a breakdown product) triggers an immune response which then attacks your own proteins (e.g. synovial joint tissue (RA), insulin producing cells in pancreas (type 1 diabetes), lining of gut (IBD, celiac), whatever...).

I took 2000 years to discover the link between wheat and celiac disease. Lets hope it does not take another 2000 years for people to say 'oh yeah, that's why my RA pain feels better if a go on a Mediterranean diet' or 'oh yeah, that's why some types of bread seem better than others'!). It may not be gluten in your case, it may be some other substance (or group of substances) for you or others, but trying a 'pure' diet for a few months is not going to do anyone any harm.

Biggest clue - are your symptoms better if you fast for 2 days or completely change your diet (e.g. going on holiday)? If so, doesn't that suggest your symptoms are made worse by some substance you are eating?

[Stills in reply to SteveSi]

I’ve never fasted (except prior to colonoscopy ) as hunger triggers migraines for me but yes after two long weeks on holiday where I hardly had bread, milk, seeds, peanuts, caffeine or cheese my joints felt a lot less painful and many GI issues diminished too. I did however eat plenty of coconut and drink lots of beer in Thailand, so if they are trigger foods they didn’t affect me. Of course heat, relaxation and the sunshine (vit D boost) and the removal of stress could also have contributed to my wellbeing . I can note that after more than one slice of bread a day which is my usual breakfast combined with cereal that my joints are more painful. I eat handfuls of seeds as I’m veggie and can definitely say that they cause joint pain and bloating so there’s definitely something in the whole watch what you eat thing. I think I’ll try cutting out all the seeds and bread first.

[SteveSi in reply to Stills]

OK. I find that breakfast is the most critical meal. Either don't have breakfast (or any snacks - no processed food) before lunch or make sure it is an AIP food (esp. no grains/flour/cereals/bread/no GF bread/no GF pancakes, no processed or GF food, etc.). If dairy is OK then fruit, nuts and yoghurt, or avocado or eggs, bacon, beans, mushrooms, (potato). Then eat a large lunch with plenty of variety (5 veg + meat/eggs/fish).

[Stills in reply to SteveSi]

I’m veggie and only eat food I cook myself mainly

[Stills in reply to SteveSi]

Quick question, I have itchy blistering rash which I think is DH but it’s torso only not knees etc, do you think it still DH and reaction to gluten?

[SteveSi in reply to Stills]

If it gets better on an AIP diet you will have your answer!

[Numptybrain]

Hi just wondering how you are getting on. I have Serositis pleural/pericardial and abdominal currently on 10mg prednisone down from 20 and about to start immunosuppressive treatments in May. There’s not much out there about it and as yet, I don’t have a cause as I’m Ana negative but high inflammation markers so rheumatologist suspects something but not willing to share as yet as I get ankle and wrist pain.

Wendy xx