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Vasculitis UK
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Undiagnosed as yet

Hi, I am a mid 50’s female and diagnosed from childhood with asthma that became brittle asthma from my 40’s. I was under a specialist centre 9 years ago when I was in and out of hospital every 2 weeks for 6 months with only being able to take small breaths. It feels like there is a concrete bandage tightly around my chest stopping me from taking a deep breath!

After 6 months I seemed to get better until December last year when it all flared up again.

My oxygen levels drop to mid 80’s on any exertion (walking or going up stairs) but recover as soon as I sit down.

My normal heart rate of 58 shoots up to 120 plus (up to around 180) on any exercise at all - even just walking up stairs, recovering again to normal as soon as I sit down or stop.

My peak flow has plummeted from usual 450 to 120 but nebulising only has an effect for about 2 hours. The only thing that makes any difference is IV Magnesium sulphate that I am having to have as an outpatient every 2 weeks as the peak flow slides again over that 2 week period until I am so bad again I have to have it again, yet by end of the 3 hour infusion I can breathe normally again?!

I have a feeling of pressure above my forehead that gets worse on exercise, the joints in my hand are swollen.

I have a very dry mouth (even dentist mentioned it at last check up) and dry eyes.

I often have a gravelly voice, particularly when things are bad with my peak flow, but that immediately goes back to normal after the IV.

I also have a constant feeling that someone is pressing against my throat, plus sharp pain on left side of my neck when I turn my head left.

Across my upper back is a feeling of such intense bruising that I can’t lean back on a chair back without being in significant pain.

Wrists achy and weak, but I also have fibromyalgia so never know what to blame on what?!

My hands always feel cold and are for anyone to the touch too.

My nails have vertical ridges down all of them and now getting splits down some of the ridges!

All a bit weird. GP and Respiratory team at the hospital are stumped. CT, bloods all normal. Only abnormality they see so far is restrictive spyrometry. Next tests are echo but one Respiratory Consultant is thinking maybe autoimmune?

They are just not sure whether to refer me to rheumatologist, cardiologist or neurologist. A friend of mine is already in this group and spoke very highly of the support so suggested I put this on and see if there are any suggestions for routes to take?

Thanks for listening to me

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Hi Echoblue!

I’m so sorry to hear you are in pain and so much going on. If I were you I’d ask for a Rheumatologist as they are the main ones who lead the medical side of things and I think you need Chemo to put you into remission. Your chest sounds like what mine did, are you coughing up blood at all?? You need to be seen by one ASAP but if you end up in A&E try and ask for a Rheumatologist and ask for an Anca test, they also may do a biopsy in your nose or lungs, not sure to be honest. The quicker you get to the right Doctor who knows about Vasculitis the sooner you will be on the right meds and on the road to recovery. Good luck xxx

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Thanks so much for your reply Alpsy. Previous bronchoscopy 9 years ago was “inconclusive” other than inflamed (no kidding!!)

Ironically Respiratory Consultant has suggested a repeat bronchoscopy and the friend of mine an Anca test.

No blood on coughing thankfully.

Gives me confidence that there is hope for some answers.

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Ahh ok well I thionyl it is a good idea for a repeat Bronchoscopy as things change. Unfortunately with our lovely Vasculitus it’s a case of physical, bloods and how you are feeling then the Doctors get the bigger picture with all 3 of them together, they can’t just do it with Bloods as they can be fine yet you are flaring. The key is getting a great a Doctor and your Lung Doctor sounds good! Keep us updated xxx

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I will do. Sadly that is half the problem - my local hospital are out of their depth and since general bloods and CT were normal they say this must just be the normal for me?!

The Consultant was a one off private one seen from another area to be able to get some guidance for the local team. As the knowledgeable Consultant told me - only one third of breathing issues are actually to do with the lungs, but my local hospital team don’t seem to have grasped that. I will keep plugging away for answers, but sadly you need energy and strength for the fight.

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Which area do you live in?? If you get referred to the right Hospital ( even if you have to travel ) then your half way there. Sounds like the local Hospital don’t know enough or haven’t got the Specialist that you need. Dr. Jayne is the main one at Cambridge but there is Specialist’s all over the Country we just need to find you the closest one xx

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Dear Alpsy (and Echo blue)

I was going to suggest exactly the same, this Dear Lady needs HELP! I'm particularly Worried about her Breathing, despite ALL the Nebulising and so on. It does sound like, the Team treating her, are 'Stumped' and are just addressing her Symptoms- rather that trying to find a Cause. I think that, a Referral to, Dr David Jane's Team at Addenbrooke's Hospital, Cambridge would be an excellent place to start. I know that Addenbrooke's, may well be, some distance from her- although you CAN 'Stay' on site, in one of their Lodges....For a Price! That said accommodation is 'Available', in the City itself, and Transport to Addenbrooke's is frequent. (That way you only have to pay Parking Fees.)

I hope that you read this too Echo blue, and DO ask for a Referral to Dr Jane's Team. I have 'opted', to continue, to have a Check Up- about once a year- at Addenbrooke's myself, even though my Consultant- at Ipswich Hospital- is Brilliant. My Condition is however, quite different, to yours Echo blue, I have had a Kidney Transplant, and suffered Brain & Heart damage.

Please KNOW that, we ALL, send you our Love and Prayers Echo blue and hope you find the right treatment. Thank you too Alpsy, for all the support YOU have offered her. I will Pray, for you, Both.

Warmest Wishes AndrewT

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Thank you AndrewT and everyone who has responded to my plight. I really appreciate the support and wonderful to be reassured that there may be answers out there and I am not imagining it all!

I will definitely seek a referral to the Addenbrookes clinic and it isn’t that tricky for me to get there. I used to go there for my allergies.

Thank you and will keep everyone posted.

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Thank you Andrew some very good advice! Hope you are well and prayers to you all xxx

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Good morning Echo blue!!

Reading your post , like many on here I share many similar symptoms and feel for you as they can be awful !! Like you I have asthma and have for 30 yrs( Oreo I am told).... I was diagnosed in late 2017 with cryoglobulemic vasculitis . All these symptoms you are describing . I share the most frightening being the breathlessness/ cooking/ unable to get breath in or out of my lungs!! I was admitted to hospital 4 weeks ago direct from my gp surgery as the symptoms were alarming her.. ... and after ten days of nebuliser / oxygen magnesium sulphate and huge increase in steroids I was discharged home... through out this my stats were often “ ok”..... but that changed in a nano second as the disease took over !! Since coming home I have been seen at a private clinic ... and yes I have cryo vas....BUT the consultant insists the ROOT cause of all this is my deficient immune system .. and the awful dugs ... while masking some symptoms are suppressing my immune system even further... which is contributing hugely to this viscous spiral... I am going to pursue the findings of this clinic and will obviously continue with my meds until a n alternative is suggested which I can then discuss with my gp/ consultant. I wish you all good things and hope you can find a route thro this.. if you wish to keep in touch I will advise you of progress from here.

Kind regards alan

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Hi guineapignot, just love your username ..... sums up many of our lives I am sure! Thanks for sharing.

It can feel extremely lonely trying to find answers to the weird and whacky when we don’t know whether things are related or not, so really appreciate your reaching out.

I do so hope you find some answers and even symptom management would be a start.

Yes, sharing each step can be very useful. Ok, we are not all going through the same thing, but something said may unlock a door for even one person to find their answers 🤞🏻🤞🏻

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Thank you!! I have found it beneficial to keep a daily log which unite not only the symptoms present but “how I feel”.... asthat is as important as anything!!... and is extremely useful for consultant. Managing the disease is one thing but the medication brings its own problems often...that’s why I am seeking the cause of all this. I havean appt next wed with clinic and will keep you posted....Idonot believe this is unique to me !!

regards alan

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Hi,

There are over 18 different Vasculitis variants which present with differing symptoms, all of the types are rare.

One of the Vasculitis types can be associated with asthma but usually presents with raised eosinophils ( a type of white blood cell ) it’s called EGPA

vasculitis.org.uk/about-vas...

It would be unusual for Vasculitis to respond to IV magnesium, you haven’t mentioned whether you are taking high dose Prednisolone as it can interfere with results. Your dry eyes and mouth could be suggestive of Sjogrens Syndrome which can present on its own or alongside another auto immune disease.

It would certainly be reasonable to see a Rheumatologist but it’s really important to make sure that they are experienced in diagnosing rare, auto immune disease. Where in the U.K. are you?

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Thanks for your thoughts there. They aren’t sure if it is related to my asthma.

I have said all along this is responding differently to my asthma, this is an inability to take more than very small breaths, but is the same on both inhale and exhaling, plus bizarrely it is easier to breathe laid down than upright which is totally opposite to when my asthma is bad.

I have previously been advised by the Severe & Brittle Asthma unit in Birmingham that I am steroid resistant so cannot take Prednisolone. They did try a couple of short courses of it in February as a desperate measure, but it made no difference. I am in the North Cambridgeshire/Peterborough area.

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It could of course be something auto immune but not necessarily Vasculitis. The fact that that your symptoms don’t respond to Prednisolone makes Vasculitis less likely I would have thought.

Sjögren’s syndrome can occasionally affect the lungs.

It might be worthwhile writing out a timeline of your symptoms and treatments for reference as if you have been getting ongoing symptoms for a while it makes taking a proper history more difficult. If you are in the Cambridge area then Addenbrooke’s Hospital has an excellent Vasculitis clinic headed by Prof David Jayne and a very good Rheumatology dept, the Consultant who has expertise in Connective tissue disease is Dr Francis Hall.

Might be worthwhile asking your Consultant to get in touch with any of these 2 Dr’s to ask advice.

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Many thanks, someone else suggested David Jayne as a starting point too. Much appreciated.

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I would have a look at Sjögren’s syndrome as well, the dry eyes, mouth and cold hands and feet ( Raynaud's type symptoms ) are fairly common. It may be that there is not just 1 answer/ diagnosis.

nhs.uk/conditions/sjogrens-...

Good luck.

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I think you could be right there. If it isn’t one box to tick! That is certainly where things can prove challenging as they seem to prefer people to be assigned to neat boxes!

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Maybe it is relapsing Polychondritis ??? Look this up it causes chest pain, respiratory problems, joint pain, throat pain etc

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I will thanks AmyS1, thank you, not heard of that before.

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How much prednisone were you on?? If it was vasculitis or relapsing polychondritis you would need 1mg prednisolone per kg etc. You would expect a response to prednisolone unless there is additional physical damage to the airways ???

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I was on 8 tablets for 5 days, repeated just over a week later. I will have to work out my weight in Kgs to see whether that corresponds with what you mention. Thanks for putting it in perspective, much appreciated.

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I expect 8 tablets for 5 days is 40mg if you have relapsing polychondritis then that would not be sufficient nor would it be for long enough. Maybe you have sjorjens and relapsing polychondritis??? They go together!!

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That makes sense AmyS1 and could also mean that maybe I am not steroid resistant after all as all doses in the past have been working on assumption of asthma but my symptoms have never been totally typical of asthma. GPs and respiratory teams would always be almost annoyed that I didn’t exhibit standard asthma symptoms eg, I never wheeze except occasionally in very upper respiratory area. When in this current state of very small breaths they actually hear no breath sounds at all leading them to now calling it silent asthma!

Intriguing to think that assumptions of steroids not doing anything may just be that I was on the wrong dose to make an impact!

Wouldn’t it be fab if we could just be plugged in and get a readout of what is up and what to do about it?! 🤔😉

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An update and as always, generally more question than answers! Have been through rheumatologist and now cardiologist. Rheumatologist is pretty sure there is an element of autoimmune issue going on but doesn’t believe that is the full picture so wanted cardiovascular possibility ruled in or out. Saw cardiologist yesterday and after echo etc he confirms all is fine with that so not cardiovascular. In the meantime barrage of blood tests from rheumatology showed high IgM (range 0.4-2.30 g/L and mine was 3.43

Platelets low with range of 150-410 10*9/L and mine was 93. Red cell distribution was also just below normal.

Everything else including ANCA was negative or normal.

Getting my GP to refer me to immunology now. Any thoughts or other suggestions?

Breathing continues to be an issue with peak flow down at 80 from a normal of 450. Just had to run the gauntlet of A&E again as local

Ambulatory centre will no longer allow booking as a day case by my surgery asthma nurse as it isn’t “normal” practice to have to have fortnightly IV Magnesium Sulphate and certainly not without a diagnosis! Catch 22 again.

A&E was less traumatic an experience today but even Consultant was silenced by my going from silent breathing, no breath sounds at all to normal breathing in the time of the IV. She said she now believes me as she has seen it for herself. That however is frustrating as why couldn’t she believe me ....... and she won’t necessarily be on duty when I need it again in 2 weeks going by current history, so I have to go through mastermind interrogation again! Why does it have to be so difficult? 😩

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