Since January of this year, I've been suffering from chest pains (feels like angry cat scratches) which starts from the centre to the right side of my body, shoulder in particular which has progressively been getting worse and added to the mix is spurts of breathlessness, hiccups/gasping for air and intermittent palpitations which had left my chest feeling very sore. Notably and quite irritating, these symptoms wake me up at night and I have to sleep in a certain position to breath.
I've been to A&E so many times, that I could create my own TripAdvisor page for hospital emergency rooms. All observations were fine including my chest xray but a breathing test did indicate inflammation plus the ECG identified palpitations. In and amongst all of this, now accompanying the flares is episodes of confusion (getting lost etc.), dizziness, very mild headache, increased hair loss, weight loss, nausea and fatigue plus embarrassingly, hallucinations and twitching at night.
I had an emergency appointment with the rheumatologist and I'm due to have various tests (brain and heart). Also, cellpet has been suggested by the rheumatologist as a saving grace to all of this. In the interim, my steroids have been increased (40mg to gradually taper down to 15mg) and have quickly taken the edge off of some of the symptoms I had been experiencing.
I'm worried and scared, which I think is a 'normal' reaction, right? Although, I would like to ask if anyone has a) had similar symptoms and what was the outcome? b) also could you share your experience of lupus brain involvement and/or lung as well?
I was diagnosed with orbital myostitis early last year and earlier this year, lupus and sjogren's.
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Amakura
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So sorry you are going through this scary time amakura. I had a very similar experience a few months ago. Extreme swelling, blurred vision, headaches, hallucinations, arrhythmia, chest pain, trouble breathing unless I slept on my right side exactly as you described. I was tapering steroids at the time and had stopped my Plaquenil on my own accord because I thought it was causing palpitations. I was wrong. It was working because everything got worse when I stopped. I tried CellCept. It seemed to make things worse for me. I think it’s most useful when patients have kidney involvement. I’m highly allergic to Imuran but I think this an option as well as a steroid sparing agent.
Something else I noticed is prednisone would worsen palpitations for me. I do better with solumedrol/methylprednisolone. I’ve now been off steroids for 4 months and on Plaquenil, aspirin and a beta blocker (propranolol) to slow my heart/stop palpitations. Things are much much better now after having restarted Plaquenil and beta-blocker. My thyroid was also out of whack during this time which didn’t help and can cause palpitations and all sorts of badness.
It’s scary stuff. I feel for you. Keep on your doctors to help you during this rough time. Things will get better. I promise. ❤️
Funny enough, Ive had palpitations on and off for years but it only occurred if I had a chest infection or pneumonia and then suddenly stopped but this time, it's been quite persistent. I had abruptly stopped my pred but that was due to my confusion and I personally believe, by making that very silly mistake, made me even more ill. Hence, my current and ongoing situation.
After reading the leaflet about cellpet, I did query its main function, which is for kidney involvement, and I'm going to query it with the rheumatologist. Although, I always find it difficult to query/ barter against their pearls of wisdom and years of experience and knowledge. I'll still give it go.
So, what was the conclusion is the end in terms of why it was happening? Was, pardon my incorrect use of terminology, but was it inflammation involving your heart? Sorry but this is all quite and New and very overwhelming for me.
I have small fiber neuropathy and dysautonomia which causes wide fluctuations in blood pressure and heart rate. I had a monitor catch me go from a rate of 30 to a 3 second pause into a rate of 150 with an atrial arrhythmia. Your heart and blood vessels are controlled by nerves from something called the autonomic nervous system aka fight or flight system. During my lupus flares, nerves get inflamed and cause them to over/under fire. The beta blocker stops them from causing over-excitation which takes care of the palpitations and spiked blood pressure. Handling my blood pressure has helped tremendously with vision, headaches, swelling, confusion. In order to really get my symptoms under control and stable, I was on a very long steroid taper over a period of 6 months while bridging to Plaquenil. I’ve also had pericarditis in the past so cardiac involvement was no shock to me. I’m not implying that the same thing is happening to you. Make sure they check your thyroid, metabolic panel, etc.
Patients with lupus are at a high risk for cardiac events/involvement. They are more often missed in this population because we are healthy appearing females. You should follow with/make an appt with a cardiologist. They can help you with testing, medications and lifestyle changes that help with cardiac issues.
I wish I had more answers for you but all I have are well wishes and hugs!
Sorry that you're going through so much. I had pain in the chest raising to the right side to the shoulder. Cod barely catch my breath. Found out that I had severe gallstones. Had to have surgery to remove thr gallbladder. I'm doing a lot better now. Won't hurt to check. I hope you feel better soon.
Gosh, that must have been horrid for you. They also checked for that and everything was fine. Thank you for sharing and I hope you are feeling better now. X
Thank you, I'll look into the celery juice for autoimmune conditions. I should have a definitive answer in a months time after they have run some tests. X
Sorry to hear you’ve got all these unpleasant symptoms. It’s so hard when they first start and we don’t have explanations, especially when it’s brain problems.
I have had both heart (well not heart itself but outer tissue and nerves affecting it) and brain involvement with the lupus but it’s best to get the heart fully checked because there is more usual heart involvement with lupus but could be unrelated and needs checking.
Pericarditis (inflammation of the tissue outside the heart) is quite common and uncomfortable. Mine used to feel like being stabbed in the heart/ centre of chest. The reason yours sounds similar is that it feels much better in certain positions (usually sitting up/ forwards) . Mine is completely cured by hydroxychloroquine and I haven’t had it for 6 years now. When I stopped hydroxy twice it came back both times. I also have autonomic dysfunction (which jmiller explains well in her response) that affects the nerves controlling my heart so I get palpitations and dizziness and much raised heart beat, especially after standing or eating. Again quite common in lupus.
The brain involvement is very scary initially but please be reassured that it’s well known to be fully treatable. I have had brain involvement since diagnosis but it’s only been the last few years that we’ve got to the bottom of it (partly because lots of drs just don’t understand it and partly because, like you say, it’s embarrassing to have the confusion/ hallucinations etc so I didn’t admit to some of the symptoms. I wish I had done so earlier because it’s actually a relief to talk about it and we shouldn’t be embarrassed or ashamed about brain problems any more than if it was hearts or kidneys, it’s just where the lupus is currently attacking us.
If you’re having extreme confusion and hallucinations it would definitely be a good idea to start an immunosuppressant, especially if steroids make such a difference as that is evidence that it’s all inflammation from the disease. I wish I had accepted immunosuppressants earlier as mine got a lot worse without them. Cellcept works very well for lots of people so worth a try. I had a bad reaction but ended up with methotrexate which was ok. I then had biological (rituximab) which worked brilliantly the first time - I had a few months where I was like in pre lupus days! 🙂 I’ve also had a lot of IV steroids and currently on 40mg pred. Steroids very quickly clear the brain/ neuro problems for me, from being unable to walk or talk properly and feeling like I don’t know if I’m asleep or awake, like being in a weird dream and my brain feeling like a net that doesn’t let words or thoughts out - or much information in 🙄😂 The drs always say I’m not listening to them! I can then feel much clearer the next day. I tend to be hospitalised with the bigger neuro lupus flares and am in hospital now although it’s currently kidneys giving me more problems but that starts some brain problems. I’ve had my first cyclophosphamide (stronger chemotherapy which sounds scary but actually went fine) and they’ve said most people with neuro lupus respond very well to a combination of these drugs.
Do you have any warning signs before the confusion/ hallucinations? This will help you and your rheumy know when to quickly increase the steroids to try and stop it quickly (although forgetting the steroids is unfortunately part of it when the confusion hits - I’m on ‘supervised’ medication in hospital because I have no idea sometimes of whether I’ve taken it).
My warning signs are that I get a fizzing type feeling throughout my body - I describe to the drs like my blood is made of lemonade! Although presume it’s nerves rather than blood, none of them have an explanation but we all know it means an attack might be coming now. I then wake up with pins and needles, numb hands/ feet and start to feel ‘weird’ especially at night where things look different and distorted. Then my words come out totally wrong, forgetful etc. Often my behaviour changes too and I can feel drunk and silly - my husband says if I can’t stop laughing that’s often a sign or I might wake up with the awful fatigue and feel really sad for no reason. Often I’ll get my other lupus symptoms at the same time of hair loss, rashes, ulcers, reduced appetite, sore fingers etc. If it’s really bad I lose tone in my muscles (go really floppy) and the reflexes in my legs and just stare like a zombie 🧟♀️. BUT the good news is that I (and the lupus professors say most people) fully recover inbetween. It’s scary when it’s happening at first. My youngest son used to cry but now we are all used to it and my boys will laugh at the silly things I say or the fact I’m acting silly/ drunk and we know now when to get straight to hospital. It is considered an emergency but it sounds like you have a good rheumy? Have you been completely open about the hallucinations etc? Very hard to do because you feel they’ll think you’re crazy but we’re not - it’s the disease. Last time I was in hospital the psychiatrists visited (which I tried to resist and was mortified about) and were so helpful, partly in tips on how to manage the weirder brain stuff but partly in explaining that it’s brain inflammation and that the barrier between blood and brain has been disrupted so all sorts of strange things can happen but it’s all got a physical cause from the lupus and can be well controlled if you can get the lupus under control.
Feel free to message me if you have any questions or want to have a chat about symptoms etc that you might not want to share publicly. I’ve been in hospital lots of time over the last year and it’s actually been really nice to meet other people with neuro lupus - even if we do give the ward drs a hard time with our (temporary!) dodgy brains and behaviour 😂 Seeing the funny side if you can definitely helps but very hard to do in the early stages when it’s all frightening and you wonder if it will get worse/ be forever. If it’s any comfort I am completely normal between brain flares (or at least I think so!!) and we have learnt good strategies to manage when things do flare up.
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