Breathless

[CecilyParsley]

Hi everyone, I hope that you are all keeping safe and coping as well as you can with this dreadful pandemic and chronic ill health? I have a question that may be silly but here goes.

Before I became chronically unwell I had brittle asthma. Despite being on three different inhalers Bricanyl, Pulmicourt and Serevent, I needed regular nebulisers and had several admissions to hospital each year. After six months of being on Hydroxychloroquine the asthma just stopped?? For the first time in twenty years I was just on Bricanyl and only used that once or twice a month. I got a new Rheumatologist two years later who diagnosed Bechets and Fibromyalgia and took me off the Hydroxychloroquine. Five months later I began to get very breathless with exertion. My GP pronounced my chest was clear and yet I struggled to lie down flat or walk far. The Rheumatologist ordered a CT scan and it was discovered that the lymph nodes around my heart and lungs were swollen causing the feeling of a lack of air. I was referred to Haematology and was horrified when she advised that she had liaised with an Oncologist and Radiographer and the diagnosis was low grade lymphoma. They scheduled biopsies. I was not convinced that the breathlessness was not linked to the Hydroxychloroquine withdrawal so I was referred to St Thomas’s for a second opinion. The diagnosis was SLE and the Hydroxychloroquine was re started and I was advised to get another CT scan in three months. I did and the lymph glands around my heart and lungs had shrunk. I was discharged from Haematology and Oncology. Last year after a sudden increase in the Hydroxychloroquine dose caused issues with my eyes I was taken off it. Last weekend I experienced severe breathlessness. I have been under dreadful stress and so believed that it had triggered my first asthma attack for years. I was prescribed 30 mg prednisalone for 7 days. I have now taken 6 days of them. Whilst the wheezing is gone the breathlessness prevails, together with dreadful night sweats. My question is could this possibly caused by the lymph nodes again or am I being too anxious. Sorry this is long winded but I would value your advice and opinions. Thank you xx

[Spanielmadlady]

This is so familiar Cecily....have you considered asking to be referred to respiratory for them to consider pulmonary / intrathorasic lupus? My rheumatologist labels me as asthmatic but my chest consultant say no as I have no triggers and my tests are negative.my lungs flare when my steroids go below a certain level.since I've been on hydroxchloroquine and mmf ive had no big flares or hospital admissions.i believe I have 5 of the hallmarks of pulmonary lupus one of which is heart involvement 🤔. Just remember to use the breathing techniques when breathless Xx

[CecilyParsley in reply to Spanielmadlady]

Oh God imagine the horror...this deluded woman not only WANTS Lupus she wants us to look at Lupus in her lungs when all she has is asthma. I can just see the looks on their faces now. Sorry it made me chuckle...bonus at least. Thankfully my new GP is very young, not knowledgeable about AI but wants to help me. It is entirely possible this is stress related but the concern about the lymph nodes is due to the fact that I am not wheezing now yet still breathless. I will ask her about getting it checked out and ask for a steroid inhaler rather than oral steroids which are crippling my stomach at the moment. It seems churlish but the fact that they did not even give me enteric coated tablet whilst investigating severe gut problems is exasperating to be honest. I am nit a fan of yoghurt but am eating four a day just to try and counteract the acid that is burning my throat. Miserable bitch alert lol xxx

[Minnskimoo]

Hi CecilyParsley,

Very sorry you are having a hard time of things.The feeling is horrible. I have asthma flare ups too( not brittle).

And your question is a good one, most certainly not silly. Helpful advice usually ensues.

I agree with Spanielmadlady to try and get a referral to Respiratory for further investigations. Although not quite the same situation, I had some help from the surgery pharmacist who said my recurrent chest infections , SOB and the need for antibiotics in such a short space of time (been happening regularly) needs investigating. He mentioned ‘bronchiectasis’ (not diagnosing here) and said a CT scan might be needed, as although X-ray clear, CT scan would be the next line of investigation. He passed this info’ to my GP who called me Friday. Referral to respiratory clinic has been put forward but as the GP put it ‘under the present circumstances -could be a while’ not helpful when breathing is a struggle.

I too am struggling with night time sweats. Stress can trigger a myriad of symptoms too. Thinking it’s not a bad idea to contact your GP and voice your very understandable concerns.

Best of wishes for an improved outcome. 💐

[Spanielmadlady in reply to Minnskimoo]

I was diagnosed with bronchiectasis in 2014.you need a high resolution ct scan for it to show up.the winter prior to diagnosis I had 8 chest infections. Bronchiectasis is permanent damage to the airways caused by infection and if that is what is suspected you need a chest specialist.i have thickening at the base of both my lungs now.i asked my chest specialist if the diagnosis of lupus superseded to diagnosis of bronchiectasis and he said he considers me as having both .there is a debate currently going on as rheumatology say im asthmatic. I had lung tests at preston on thurs which hopefully will put an end to the debate 🤞

[Boudica1 in reply to Spanielmadlady]

I had a CT scan with contrast and was diagnosed with Emphysema, Bronchiectasis, some Fibrosis and Lung Nodules.

X-rays don't show much so I was first diagnosed with COPD which I've since found is a umbrella term but many doctors think is a disease in it self.

But at least now I can if I'm feeling a bit miffed with a doctor tell them to take a look at the CT scan results for the correct diagnosis 🙊🙉🙈😳.

I have breathlessness and nightsweats as well which has been getting a lot worse along with palpitations and some discomfort (don't like to use the P word). I thought it was one of the lung problems causing it, oops wrong. It's seems to be the Arrythmias ♥️💞♥️♥️♥️💞.

I have a very high pulse resting rate which needs to be got back under control, as the doctor explained at the moment it's like I'm on a continuous marathon and that's not good for the system.

Here was me thinking that when I woke up sweaty and breathless that I must have had a great dream with a very dishy man and couldn't remember it. Dream shattered 🤣😂🤣😂💔.

♥️

[Spanielmadlady in reply to Boudica1]

Oh darn dishy man any day.despite having hrct and a consultation with a professor of respiratory at the northwest lung centre my local hospital still dont agree with the diagnosis so I refuse to see them now and instead travel to royal preston chest clinic .Im frequently tachycardia and the nights sweats are less frequent just as I'm hitting menopause age 🙄 .x

[Minnskimoo in reply to Spanielmadlady]

Mmm ..that’s interesting, Spanielmadlady.

I have a diagnosis of Behçet’s like CecilyParsley mentioned in her post. That said, I am still awaiting blood tests from oral medicine as I have some oral symptoms and ‘others’ that could be connected to Lupus or MCTD or Sjogren’s ....so it goes, and has been for some years. 😬

Your comment about asthma is also interesting as my peak flow has been on the level but I’m still getting SOB!

The night sweats.. who knows? I’m past the age of menopause and had total hysterectomy 22 years ago . I was 39. Never been great since ovaries removed! 😬

Hey ho

[Spanielmadlady in reply to Minnskimoo]

My sats are always perfect as is my lung capacity.my lungs flare very quickly which can also be a sign of pulmonary lupus.im hoping after my video appointment on weds they might (finally) put pulmonary lupus down in black and white x

[Minnskimoo in reply to Spanielmadlady]

Even more interesting! And thank you - as this makes me realise there’s maybe more to this than ‘asthma’ Which , strangely enough,got progressively worse after my hormonal disruption- AKA removal of ovaries and any modicum of good health I ever had prior to all that.

All crossed you finally reach a conclusion. Odd how we have a gut feeling about things isn’t it !

Best wishes for your appointment on Wednesday! 🤞🏼💐

[Spanielmadlady in reply to Minnskimoo]

I have no triggers for asthma and all my tests over the years have been negative.i had no breathing issues until a chest infection led to pleurisy with effusion which inflamed my heart .I've also been in hospital with type 1 respiratory failure pneumonia x6 and right base atelecasis (lung collapse) all in 5 years .all responded to steroids 🤷‍♀️ I'll admit my knowledge of asthma isnt great but to me there is too much going on for asthma.

Thank you it's with a colleague of my chest specialist who has been asked to give a second opinion so be interesting to see what he has to say 🤞 fingers crossed the connection behaves xx

[Minnskimoo in reply to Spanielmadlady]

Oh my! That sounds horrific. Certainly sounds more to it than asthma .

I had pneumonia but thankfully only the once. Strangely enough my lungs, along with oral ulcers improved on steroids. I am still trying to reduce but it’s got to the stage where the ulcers have returned and the related chest infections.

Sometimes, ‘fresh eyes’ are a good thing!

All crossed for a better outcome. Lord knows, you sound as if you need one.

Best of luck 🍀xx

[Spanielmadlady in reply to Minnskimoo]

Thankfully my chest specialist has seen me poorly so I have his support..I've had no big flares ,infections or admissions since I've been on the lupus meds. My issue now is getting the steroids down too.my breathing deteriorates the lower my steroids get x

[Minnskimoo in reply to Spanielmadlady]

That’s not so easy is it? And if you have had marked improvement while on them - reducing is tricky.

Great to have support from your chest specialist though👍🏼

[CecilyParsley]

I have some scarring of my lungs due to my brittle asthma being misdiagnosed for years as bronchitis and hay fever. By the time I was blue lighted to hospital I was in intensive care for three days and on a side ward for three weeks. The pulmonologist advised change your GP and I did. For years asthma was my nemesis. I even had to carry my nebuliser as hand luggage on the plane for my honeymoon. The Hydroxychloroquine and steroids just made it go away. I was told when I had the incorrect diagnosis of low grade lymphoma that I had potentially four years to live. The referral to St Thomas’s was very thorough and yes they did all the tests for Lupus all strongly positive. Six months later after my then Rheumatologist complained to them and challenged the diagnosis they reduced the diagnosis to one of UCTD, Vit D deficiency, Hypertension, Underactive Thyroid, Spleenamegaly, and they discharged me. The Haematologist told me that she was discharging next when the lymph nodes returned to normal but that I should have yearly CT scans. I have been refused CT scans since that time 2013.

[Boudica1 in reply to CecilyParsley]

That's abysmal treatment and I'm surprised St Thomas's gave way. Once you are fully discharged from the current hospital is it possible to get a referral to a different one?

♥️

[CecilyParsley in reply to Boudica1]

I was supposed to return to the Rheumatologist who took me off the Hydroxychloroquine. To be fair he was very thorough but very angry about me going to St Thomas’s. He wanted to refer me to someone in Birmingham a Dr Caroline somebody but I refused. I did without any Consultant for two years until I got sick again. I then had tentative diagnoses of SLE, Bechets, Fibro for five years. Currently I am on my third Rheumatologist in a year. First said Lupus and upped my Hydroxychloroquine only to take me off it completely and revise his diagnosis as Fibro and “ hysteria” when I had eye problems. The next one said UCTD no Fibro but that I should think positive and get on with life. The new one I have not yet seen but he was wonderful on the telephone appointment and seemed genuinely to want to help, acknowledging that Rheumatologists had made life very difficult for me with their inability to stick to a diagnosis and not agree. I really hope that when I get to see him things might fall into place. Fingers crossed xx

[MEGS53 in reply to CecilyParsley]

Hi CP. You go through so much. I wish I could help, but at the very least I'm sending huge - but gentle - cyber hugs, xxx

[CecilyParsley in reply to MEGS53]

Bless you no more than anyone here and certainly a lot less than some Meg. Thank you for the hugs much appreciated xx

[CecilyParsley]

Hi Lou, I am just worn down with it.Last week I had a GP appointment, my BP is high, she is referring me for a scan of my stomach, I had stool samples taken. I have bloods next week then a telephone appointment with the GP. I am so damned sick of myself. Sorry self pity is not attractive. How are you doing my lovely? Huge Cwtches xxx

[Hidden in reply to CecilyParsley]

I just wanted to say that I completely relate to all of this and the feeling of being a slave to self managing while none of my doctors are connecting the dots. In fact investigations yielding no responses from anyone and all reviews cancelled or on hold.

I’m supposed to have been having lung function and echocardiograms yearly for 4 years but had my first PFT in January and have never yet had my echo - almost a year since referral. Yet my pointers are to Pulmonary arterial hypertension. Similarly no tests for Myositis yet my antibody points to this too as part of O/MCTD.

I must say that Mycophenolate has helped with my breathing and doesn’t give me the side effects Hydroxy gave me (hives, agioderma) so this was my main reason for commenting.

My dry cough, hoarse voice and sense of not being able to draw breath properly have variously been treated as post viral asthma, silent reflux and possible early lung involvement not yet showing. I’m being given 3 monthly depomedrome injections which also seem to help my chest pressure. I haven’t had the frequent strange drop in voice and feeling of being oxygen deprived, leaden chest or cough for many months now so I assume this improvement (never showed up in PFT though) must be the MMF and depomedrome combo I guess.

I think our autoimmune diseases present differently to the conditions like asthma and COPD which show in standard tests - because systemic issues and inflammation are at play and aren’t factored in by people doing those routine tests.

But I definitely notice that I feel better having got back on meds after 2 long years of being taken off them.

[CecilyParsley in reply to Hidden]

Yes it feels like an uphill battle to not be compartmentalised. It just makes life more difficult. I kept going to my GP complaining that every time I bent over I had a pain in my stomach high up, that it felt as if something were stopping me bending. I was told it was my obesity, that it was nothing. I had to go for a Doppler scan given my Antiphosphilipid and bright red feet and tender calves and the registrar asked if she could examine me. Honestly she actually put her hand around my tummy and said my goodness your spleen is very enlarged. A CT confirmed that it was . I was so annoyed with my GP for not even have taken me seriously. I hope the ease of your symptoms continued, you have waited long enough for such relief xx

[Lizard28]

I’ve had a few problems with breathlessness, I had pneumonia, then a year later after the high resolution scan it showed I had pneumonitis which is inflammation of the lungs, when I moved anywhere I couldn’t breathe. Steroids were the only thing that worked, inhalers were no use to me my consultant told me. After a follow up appointment a year later it showed lymph nodes at side of my lungs, I was diagnosed with NH lymphoma, I had it in my neck, under my arm and lungs and side of kidneys. I had treatment but it came back again after treatment. I had terrible night sweats and also lost weight. I thought it was just the usual auto immune problems. I am now on watch and wait, feel great as well. I’m also on hydroxy. I asked my Rheumy if it was linked as I’ve got MCTD but she said maybe but it was rare, I’d honestly ask for the high resolution scan as it shows more clearly than the normal ct with contrast. Please tell your GP about the continuing night sweats, it could be another underlying health problem. Hope you get more clarification soon, take care xx

[CecilyParsley in reply to Lizard28]

It is uncomfortable isn’t it? I have not been to bed and it is 7.30 am. The sweats, the breathlessness and the gastric issues worsened by the steroids uugghh. I am speaking to the GP next week about the bloods, High BP and stool samples so hopefully she can refer me on from there. I am so pleased that you are feeling good now, it is quite scary to go through. Xx

[Hidden in reply to Lizard28]

People with Sjögren’s Disease are more than 40x more likely to get NHL than those with other rheumatic diseases such as SLE or the general population. Just thought that might be worth a mention here.

[Lizard28 in reply to Hidden]

I did mention that to my Rheumy as well but she dismissed me, i have all the symptoms of Sjögrens but the bloods didn’t show it. I’ve had three doctors asking me if I have it. For some reason she doesn’t really treat Sjögrens. She did refer me to an ophthalmologist for my dry eyes, and my dentist and own GP have helped with my dry mouth problems. She is a stickler for blood results. I still think there was a link.

[Hidden in reply to Lizard28]

Well the only definitive diagnosis for Sjögren’s is the lip biopsy. And this can also give a good picture of the person’s likelihood of getting NHL. So your rheumy is being short sighted - as I’m afraid most rheumies are unless you attend a dedicated Sjögren’s rheumy and there are precious few of these! I have overlap CTD and Sjögren’s is included.

[Lizard28 in reply to Hidden]

I agree with you totally, it’s like drawing teeth with my Rheumy. X

[CecilyParsley in reply to Lizard28]

I too have had my Opthamologist say that there is a possibility if Sjogrens plus my dentist referred me to a dental hospital because of my dry mouth and crumbling teeth. He felt I would be best treated at St Thomas’s who then discharged me?? All later Rheumatologists refused the lip biopsy based on bloods. The same Rheumatologists dismissed the Gastroenterologist concerns of Crest. It is very frustrating and demoralising xx

[Lizard28]

It’s such a scary process and especially so with Covid still going on. I was getting checked every 3 months with my haematologist, but my last f2f was December last year, my appointments have been cancelled. I’ve got one for end of month and now wondering if it will get cancelled. I hope they get to the bottom of it for you, I got referred with gastric problems as well and eventually after tests they decided kindly to put gastroparesis into the mix, it never ends. Best wishes xx

[CecilyParsley in reply to Lizard28]

Thank you so much xx

[CecilyParsley]

So sorry you had an infection Lou. It seems that we just get one thing after another it is relentless. Stay safe lovely xxx

[Hidden]

Yes of course. But these only help with the non systemic aspects of Sjögren’s - like treating rashes of Lupus. Both are systemic connective tissue diseases and it’s the systemic side of Sjögren’s that causes the significantly increased risk of Lymphoma.