I was diagnosed with Adult Onset Stills Disease (rheumatoid) aged 17 in 1979. Medication free by my mid 20s expect pain relief.
I’m 61 now and have been unwell this year possibly exacerbated by grief and stress following three family deaths in three months early this year.
Telephone consultations have resulted in many blood tests, a gastroscopy, a night in ER revealing Orthostatic hypotension (I’m dubious about this) and some innocuous meds. Initially blood showed raised liver enzymes so liver cancer and ovarian cancer have to be ruled out, gyne scope on 19th colonoscopy pending after abdominal u/s showed possible diverticulitis ( my bowels are normal though). Weight loss, abdominal pain , fatigue and vaginal spotting with increased joint pain are the primary symptoms with increasing flank and rib pain and heart pounding unexpectedly.
My Research indicates those with AOSD ( Stills) and more likely to develop MAS for unknown reasons. Dies any one have any experience of this?
My GP is clueless about Stills as was the ER but that’s understandable as it’s rare but I would like them explore this possibility given raised liver enzymes that I had in February are a leading symptom.
thanks in advance fellow sufferers.
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I was taking Filgotinib and they added the antibiotic co trimoxazole I felt unwell with a fever and went to A&E where I shook uncontrollably. My ferritin was 128,000 and my platelets fell really low. I was admitted immediately and given 1g pred IV continuously for five days I was very ill. I think if your ferret in is going checked as it should with stills they would pick up on mAS. It’s very intense Do you have fevers and rash?
Slight afternoon fever and face flush which I’ve always attributed to Stills. From your description I’m not unwell enough for it to be MAS. I’m just tired of being unwell and looking for answers. Thanks for your reply
Ah bless you. It’s awful not getting answers. Do you know your ferretin levels ? I don’t eat tomatoes I d try ink pineapple juice and cauliflower seems to help. Small consolation I know but hope that could help
I don’t t know the ferritin level but it was checked and GP said ok, I’m veggie and eat healthy I think, no processed food . I’ve always avoided tomato’s although I love them as they definitely aggravate my joints which seem worse everyday at the moment. Thank you for your reply, the ovarian cancer ‘scopey pokey ‘ is soon so answers on the horizon hopefully. Compared to you I’ve been lucky with Stills I think, just joint damage and the afternoon fevers, flush and sore throats which have been present the since diagnosis. Wishing you good days.
I say that to my hubby tired of being unwell. I have a very different set of issues with RA Oa fibro etc but then heart and lungs then diabetes and skin cancer came into the mix within 3.5yes of RA starting.
I said to my GP just as I think ok I can’t get anything else let’s move forward something else is thrown into the pot and it’s back to the start almost. My GP said the bad side of autoimmune is some of us just get the melting pot of AI as it’s likes to do group hugs 🤗
I don’t know anything about Stills or MAS but I do know about (autoimmune) GI dysmotility. It might be worth getting tests done for other autoimmune diseases such as Sjögren’s and systemic sclerosis - both of which can commonly cause dysmotility - which is neuro gastro rather than pure gastro. Dysmotility can affect the gut anywhere and is usually associated with damage to the vagus nerve causing or caused by autonomic neuropathy or related small fibre neuropathy. You need motility testing to find out and this isn’t the same as having scopes.
Most often sufferers will have Gastroparesis which is confirmed by a gastric emptying scan. The most common cause is diabetes but this is simply because diabetes is common. There are many other rarer causes such as scleroderma, Sjögren’s and EDS (I have all three) and it’s often put in the ideopathic category. It’s a pretty miserable condition because there are no meaningful treatments and those badly affected will often end up on TPN/ parential nutrition. But there are nutritional supplements and prokenetics to try and a dietician can give advice on managing it through diet.
So if all other avenues of enquiry draw a blank then I would ask your rheumatologist or gastro about this possibility - which may make sense of the orthostatic hypertension diagnosis too. X
dismotility causes Orthostatic hypotension if I understood your post? At the ER they said my BP drops upon standing by 20% hence the vertigo, although I’ve only had 4 episodes of this when I needed the meds. I admit to mild nausea and dizziness most days but don’t need the meds and don’t always get vertigo. Hence I’m dubious about the Orthostatic hypotension diagnosis. I think it’s linked to cluster migraines maybe as it always occurs after those events. My BP has historically been ok.
My tummy and bowels are ok apart from abdominal pain, cramps and bloating, none of which is continuous. Fatigue is constant and after each episode of tummy cramp I lose weight, currently 8 stone 4, started at 9 12 in February. The vaginal spotting is a mystery but I have an appointment on 19th with gyne and colonoscopy date pending.
Having chronic RD of AI nature since I was 17 I’ve experienced many dry eye issues but not diagnosed. I also have dry skin and rash issues and a diagnosis of lichen sclerosus .
I’m not under a rheumatologist and my GP is dismissive of any AI involvement from Stills Disease.
One of my First symptoms in Feb was raised liver enzymes and I believe that’s a sign of MAS. I have read those with Adult onset Stills Disease are more likely to develop MAS although it’s unclear why. I don’t thinks there’s much treatment for it anyway so I guess it’s a case of self management.
So a lot going on, pain and fatigue being the worst things snd awful anxiety which I can’t seem to get rid of, it’s like knowing the creatures from hell are in the the room next door trying to get out. A fanciful description perhaps but it is a good analogy of my dread and fear. What causes this is another matter…. Thyroid, hormones….. I just don’t know.
It’s not as black and white with autonomic dysfunction as you are maybe thinking - it’s all a spectrum like RD, Lupus, Sjogren’s, Vasculitis and Scleroderma. Also untreated hypothyroidism. There are degrees of severity and as my lovely rheumy said to me when I first reported unintended weightloss “well everything has to start somewhere you know..” when she suggested Gastroparesis and I said no I don’t vomit much. But test showed I had it severely!
My neurologist said same about POTS re the increase in syncope I reported to her last week when I objected. My BP doesn’t drop enough when I stand. She said well it might now so stop assuming things can’t change!
I don’t actually think it matters what we start with when younger - the point is that we have autoimmune disease and the vagus nerve problems can and will evolve anyway they darn well please. The tendency to revert to prior diagnosis for all that evolves later in life can be unhelpful. Although with hindsight I think a lot that happened to me when young was part of the sub clinical hypothyroidism.
I read up about MAS after your last reply and seems to me your GP should be taking this seriously, with raised liver bloods. They should also be concerned by the spotting - although this might be your lichen sclerosus. Just because others may describe very dramatic symptoms of MAS or others yours may be evolving differently?
I completed relate to the monsters in room next door feeling. When this happens I take this as a sign that all is far from right and you are rightly feeling you aren’t being taken seriously enough. But to me this all sounds very vagus nerve / autonomic as that sense of doom feeling can be very much connected with any autoimmune activity at all. It doesn’t have to be 24/7. And having a highly tuned vagus nerve is part and parcel of our body’s intelligence to know when something is wrong.
My syncope episodes are bad when I’m taking a tad too much or too little Levothyroxine or when I’ve had an episode of bowel dysmotility exceeding my normal. However I think perhaps you’re being a tad rigid in your self diagnosing. Orthostatic Hypotension/ POTS is easy to diagnose and can be frequent or occasional and can attend any number of conditions including RD. So if your hospital A&E diagnosed it then they were almost certainly correct but it doesn’t mean you don’t also have MAS or the others. You need a good rheumatologist or other specialist to be medical detective and get to the bottom of all of this. Best of luck x
Thank you for your very detailed and informative reply which I really appreciate and you have made some good points and suggestions that had not occurred to me. The first thing is that the vaginal bleeding could be related to LS. The second that there are degrees of everything and things start somewhere and that MAS could evolve; I was thinking I wasn’t unwell enough, now ( I was in February at the onset) but combined with the earlier liver findings I will raise this with my GP when I call to get the results of the gyne appointment set for 19th.
On the subject of gastroparesis I know nothing but will read up on it. With no vomiting and normal bowel habits and a clear FIT I was thinking those areas are ok…. Colonoscopy pending still and they are also looking for diverticulitis.
I can’t thank you enough for your input, I feel calmer about what’s going on armed with questions to ask and knowledge to find. Thank you OldTed60
Since your reply I’ve been reading and find that SBIO can be caused by PPIs which I was prescribed in February although since then I’m on a ‘use as needed’ basis but I’m not using them unless desperate as they give me bad headaches so your responses already have proved useful thank you agsin.
Yes I have SIBO but have been on maximum esomeprazole and Mycophenolate for years now and it’s almost part and parcel with systemic sclerosis. I would think it quite possible but unlikely for you if only started a PPI this year and not even taking that regularly. But they do say that many with IBS have been misdiagnosed and it’s SIBO so worth asking. I take Rifaxamin 2 weeks on then off for this. I hate PPI but it’s only thing that stops an evil dry cough for me and I’m high risk of ILD and pulmonary arterial hypertension so not really got much choice x
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