So I have posted on here over the past year a few times about my progress with autoimmune disease. So they so far have high suspicion of Lupus/SLE (still), but now my Rheumatologist ordered that I go (next week) to inpatient care at the hospital for a week long evaluation, day and night.
Has anyone else underwent an inpatient stay at a hospital for testing? What all did they test and how?
He said my case is too complex even for him, and he needs a team of specialists to help him know the best treatment plan. He also said he assumed the plaquinil would do more (but he also only kept me at a low 200mg per day dose to protect organs but didn't want to bring my antibodies down too much so they can do more study on me, which now means hospital stay - strange to say the least but maybe because of my centromere B antibody he was confused?). He said he believes it is an overlap syndrome possibly with Lupus and Scleroderma, but needs help to confirm. Here is my antibodies and bloodwork over the past year> Does anyone else relate? I dont have lupus antibodies in the form of DSDNA but was told that only ~70% do. I have friends with lupus in renal failure with no dsdna so I believe that can happen.
I do, however, have Scleroderma antibodies in the form of Centromere B. Other bloodwork as follows:
ANA first was 1:640 now 1:160
Homogenous and Speckled patterns
Anticardiolipin Antibodies (APS Antibodies also often found in Lupus patients)
Beta-2 antibodies (APS Antibodies also often found in Lupus patients)
Didn't even need to run Lupus Anticoagulant because typically positive if other 2 are.
Centromere B antibodies (Scleroderma antibodies, But maybe only a small bit of Sclero symptoms? Lots of GI issues and joint issues tightening along with weird skin stuff... but lupus? or sclero?)
Thyroid Antibodies (but no hashimotos)
Leukopenia off and on
Hemolysis (low red blood cells off and on)
Low Alpha-2 Globulin
Now I am just a little freaked out. Like... why send me to a hospital for full evaluation? Why wouldn't a Rheumatologist be able to piece this puzzle together on his own?
When I flare I get the following:
Swollen Lymphnodes
Swollen Joints
Ulcers Mouth
Bloody nose
GI issues
Malar Rash on face
Rashes elsewhere (got better with plaquinil)
EXTREME Fatigue. Even between flares
EXTREME head aches (come end of flares - Migraine level for days)
EXTREME upset stomach end of flares and likely coming from the level of head pain
Any experience with any of this>? Im just so confused
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GottaAsk
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hi there. Got to say I’m amazed - never known a rheumatologist do this for diagnosis? I have overlap syndrome - sjogrens, scleroderma and possible polymyositis rather than lupus so far. The only antibody I carry is a very rare scleroderma/ myositis one and my ANA has done similar to yours. My GI tract has failed. But I’d be so glad to have a rheumatologist who admits they are out of their depth and wants to get opinions of others from different specialisms. If only we all got this level of multidisciplinary testing. Best of luck in the hope you will get the diagnostic clarity and treatment you want and need 🤞🏻🙂
thank you! I agree. At first I was alarmed and actually upset like “why do this!?” But then I realized not all rheumatologist are fit for all diseases in the same way through their studies and such. I think he just doesn’t know enough about scleroderma or how it onsets. I was then thankful he admitted this and moved me on to a team about it all. I’m also in Switzerland and they tend to do things very slow and cautious and detail orientated. I am hoping it ends up with getting me better soon.
ahh that explains - you’re under a different healthcare system. Interesting fact: June is always world scleroderma awareness month because 29th June was the day Swiss artist, Paul Klee, died of systemic sclerosis. So one would hope that Swiss rheumatologists would be extra aware perhaps?
I actually just received an email from SRUK and was quite startled by some of the facts they give about scleroderma ignorance amongst general (U.K.?) rheumatologists here: “This Scleroderma Awareness Month we surveyed 150 Rheumatologists in the UK and found that many are not confident about the signs and symptoms, believe scleroderma services are underfunded and would welcome more training and education. Today we've published these stats and we're calling for greater investment into scleroderma care. We'll also continue to explore what further support SRUK can offer rheumatologists in providing the best possible care. Our survey found:· 64% said they were unsure about scleroderma’s signs and symptoms. · 21% had either not heard of scleroderma or did not fully understand what it does to the body.· 65% thought scleroderma services and training and education are underfunded. · 87% said they would value further training in scleroderma care.· 50% reported using SRUK as an information source to inform patient care.”
I've been monitoring my symptoms using weekly charts.
Across squared paper draw 7 bars, one for each day of the week.
Then each bar divided up into 24 so can monitor hour by hour.
I colour the time I'm asleep in one colour, the time I'm inside another. Record symptoms, put in when I take medication, when it is sunny, times that are stressful have red arrow going up, times that are not stressful green arrow going down.
Well I noticed patterns, joint pain, flesh burn worse at night, headaches lasting weeks after stress, kidney pain in autumn, rashes in the summer..
My rheumy appointments were 3pm in the afternoon, but my symptoms were worse at 3am in the morning when my immune system kicked in. Then I would wake up sweating and need to eat because I was so hungry, sometimes eating prepared salad because my mouth was so dry.
I always wished there had been somebody interested enough to pick up on these things. Maybe it is a new idea and your rheumy is a pioneer.
Attaching template below, sorry key is a bit blurry.
I write the dates down the left side. I've numbered the records and keep them in a folder so can compare this year and last year etc
thank you and I wish so too to be honest. So much happens outside of those windows every couple months we see the doctors. Literally daily. I’m curious how this ends up. Fingers crossed they’ll finally figure it out and get me fully on treatment. Rheumatologist already brought up Benalysta or however it’s spelled but needs me to do all this first.
Hi There, I too have complex overlapping conditions.
I also went into hospital some years ago now for tests to be diagnosed although mine were more neurologically based but related to other auto immune conditions. I can understand why you are worried and alarmed, what I would say is don't be as it hopefully it will be the case that they will properly diagnose you from this, otherwise it could be months or even longer for waiting for individual tests/results/specialists appointments. Great too that you will hopefully end up with specialists all in the same hospital that communicate, I have great specialists but in my case none are in the same hospital and communication gets missed between them.
Autoimmune conditions can be so complex and its good to hear a specialist being so through. I really hope you get some answers and treatment that helps you.
I can see why you would be alarmed. They used to do this a lot I’m the old days so that specialists can easily see the patient and get tests done. It really is efficient but expensive. In your case your doctor thought the benefits outweighed the costs, Now you don’t have to come and go to the testing locations and see doctors for a spread out period.
I had a friend in junior high who had mouth ulcers and joint swelling. She was hospitalized for a few days, and I think they were working her up for autoimmune disease.
I hope it goes well. With your nose bleeds, migraines, I can see why your rheumatologist might want to get the opinion of a hematologist or neurological and maybe others.
Check back to less know how the intensive work up goes.
That is very common. I have undifferentiated connective tissue that has not developed into full blown lupus. It is not possible to know whether you will evolve, but it usually happens in the first years. Stay out of the sun for sure. Your rheumatologist will follow closely and you should report any new symptoms.
There is a lot of information for patients on undifferentiated connective disease now.
I can understand you being apprehensive and a little shocked, but this can only be a good thing! They should know what is going on with you as you’ll be checked by many disciplinaries. They’ll then be in the best possible position to treat you in exactly the way you need. It’ll be the quickest way to get answers and treatment as it would take an age to get this amount of information from testing if you were an outpatient.
It is unfortunately very common for lupus patients to also have or develop other autoimmune disorders. I originally got diagnosed with lupus, but over time I also developed Sjogren's and Hashimotos.
The immune system is very complex and can change over time and have complicated interactions. So they do try to identify what the various sources are in order to develop the appropriate diagnosis and hence treatments.
Lupus can also start out attacking one system, and then change and focus on others. For example, your skin, your heart, your cardiovascular system, your brain, your kidneys, other organs etc. So it will take quite a few tests to scan all those and figure out where the damage is occuring and what may be causing it. You'll probably get extensive scans of various organs and systems, and blood work and perhaps biopsies.
They've probably decided its best to get all that over with at once rather than in dribs and drabs in and out of hospitals/diagnostics, etc.
hello! So far it is landing as UCTD as organs are ok. I’ll find out more july 18th when all bloodwork is back! It’s presenting as Lupus mainly but I have symptoms and antibodies of others so now it’s seemingly a bit of a “here we go” kind of stage lol.
Hi GottaAsk, gosh what a lot you have going on! It’s not unusual to go into hospital for extensive testing, my first ever rheumy did this as apparently it’s far cheaper to get the battery of tests done as an inpatient rather than doing them separately as an outpatient. Also, if you go into hospital, they can line up the tests and get them all done in the space of a week. Whereas if I were to do them as an outpatient, booking them in around work and all my other commitments, it would probably take me 6 months!
When I went in, I saw 6 specialists: neurologist, specialist physio, gastroenterologist, gynaecologist, ENT and of course the rheumy. I had bloods (I also have anticardiolipin antibodies, just like you), x-rays, CTs, neurological tests, full battery of audiology tests, balance tests, endoscopies, and I can’t remember if they did MRIs then or not but I sure have had plenty of MRIs since then.
In terms of your rheumy putting all this together—yes and no. Yes, their job is to coordinate your care and put all the results together and interpret their meaning. But no, they are not a specialist in all areas, and by referring you to other specialists for specific testing, they are doing the right thing. Usually, my rheumy works out which specialist I need to see, provides a referral, and then I see the specialist and do the tests and go back for the results, before returning once again to the rheumy for his holistic interpretation. The rheumy is a specialist in rheumatological (and sometimes immunological) conditions only, and their job is to liaise with other specialists and coordinate your care according to your symptoms. Hope this makes sense, and hope it is helpful! Do go into hospital if you have that option, it can make the ride so much smoother!
thanks so much!! So far they are saying UCTD and I meet them July 18th for the treatment plan. It’s because my antibodies and symptoms are scattered a bit across the autoimmune board of diseases he said. So I’ll know more now july 18th
But my experience was amazing. I met with all the same people you listed here and it truly revealed lots! Still not much of my blood work was back yet when I left so now I wait a couple weeks.
I’m glad you have a plan for July 18th, and UCTD at least gives you a bit of a direction (hopefully). I’m also glad you had such a positive experience meeting with all the doctors! Mine was super positive too, I got diagnosed with a range of things that had been eluding diagnosis for years, some of them for decades. It’s a great way to get a lot of stuff sorted very quickly. Good luck for the 18th—keep us posted!
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How many people here have Sjogrens Syndrome?
Lupus, Sjogrens or something else?
dsDna levels.
Hello to all! Potential lupus diagnosis coming my way.
