Chest pain update: So I posted over a month ago... - LUPUS UK

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Chest pain update

Charlottelauren profile image
7 Replies

So I posted over a month ago about my chest pain and it still hasn't gone!

Have had a hospital admission because my heart rate was so high and blood pressure so low, still have had NO chest x ray as they say my lungs are clear. Consultant said maybe I have inflammation around my lungs or my heart. My bloods are all over the place and now tonight my chest has been quite bad, I yawned (which does cause me severe chest pain) and then about a minute later I could taste blood in my mouth and spat into my sink, only to find my mouth was full of blood 😫

I'm really stuck on what to do now as no doctor is really making the effort to find out what's causing my pain as my lungs are clear. Any advice on moving forward???

I recently had my rituximab infusions and I have an appt at st thomas' in November but I can't deal with this pain much longer !

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Charlottelauren profile image
Charlottelauren
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7 Replies
joannebond360 profile image
joannebond360

Hi.

I have been going through exactly the same thing apart from the blood.

Mine started after my 6th lot of rituximab Back in January and I've had this awful pain since. Had clear chest X-rays, was in hospital twice for the high pulse and pain.

They have put me on beta blockers and I've had 24 hour monitoring, just waiting for the results. I have just had a ct scan on my chest too last week, I'm just waiting for the results. I feel like mine is all lupus related as I've been flaring. I'm sure it's inflammation.

Can you get back to see your consultant any sooner? The blood part is a bit of a worry.

It's so painful isn't it?

Hope they can get some more tests done for you.

Jo

joannebond360 profile image
joannebond360

I forgot to say that I'm at addenbrookes and under the clinic there, they have a lung specialist in the clinic which I am now under too. Maybe st Thomas's have the same. Saw numerous gps at my surgery who were pretty hopeless, I just ended up having 10 lots of antibiotics as everyone thought it was infection.

Jo

Fennella02 profile image
Fennella02

That doesn't sound nice. My chest X-rays are always clear but they're relatively insensitive for soft tissue things. You need a CT scan - I'm surprised you haven't been offered one yet. Please start asking xx

zebedee01 profile image
zebedee01

This is how I was diagnosed with lupus! Chest pain for months and kept getting told it was a virus!

It is really bad of them not to do a chest x-ray! My chest also sounded clear when one of my lungs was full of fluid! It showed on the x-ray!

Can you not ring and speak to your specialist? Mine is very good and any time I get pain I can ring him and he gets back to me and sees me if necessary.

I would definitely be going back to them about the blood of you haven't already, as this is a new symptom and may make them get their finger out and do further tests xx

Good luck! I hope they get to the bottom of it soon for you xx

vaderviper profile image
vaderviper

Hi,

Rituximab infusions can have many side effects, some of which may not be typical such as racing heart and low blood pressure. Sometimes you need to challenge the body by stopping the medication to see if symptoms improve. However you stated that when you yawn it causes severe chest pain.......taking a deep breath can cause that type of pain if you have pleural effusion ( which is an excessive buildup of fluid between your lungs and chest cavity). Your lungs may be clear of fluid but your chest cavity may not be. You need to have a chest x-ray and a complete blood work up (not just a CBC) by an Endocrinologist...........sooner than later.

Dr. S. (in the USA)

field profile image
field

U defo need a ct scan. X rays do not show up inflamation also they only show the front of the lungs so if there is something going on at the back they wont know with an x ray.

I am astonished the doctors u r seeing r taking what seems to be a serious symptom so lightly.

Please insist the longer u delay the more damage you may sustain.

All the best

samlewis67 profile image
samlewis67

so sorry this is happening to you but bloody hell i've got the exact same thing , been going on for about 8 weeks now. low blood pressure pulse between 98/100 and horrible chest pain and dry cough.my doctor said the specialist should be doing more tests !!! wont see him for another 2 or more months .just had yet another chest infection and that's without the joint pains.so sorry for moaning but i seem to get told to wait , i'm on methotrexate and feel like i am never ever well ,but thanks to these posts am going to go back to G.Ps thank you all so so much xxx

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