Anyone had chest imaging showing inflammation?

[cappygal]

I am wondering if anyone has had imaging of their chest area which showed signs of inflammation? My team don’t want to do an MRI and I’ve had a CT but no one seems to be able to tell me what the definitive imaging should be? I’ve had diffuse chest pain for almost a year (suspected costochonditris), almost three years on and off. Along with hand, wrists and hips joint pains. Last hand and wrist Ultrasound showed signs of inflammation and thickening. But yet I can’t get help/diagnosis 😢 Appreciate any advice/shared experiences. Xx

[PMRpro]

PET imaging I would have thought - not that I'm an imaging expert. Positron emission tomography. PET-CT is preferable I think. Ordinary CT doesn't show much.

This is interesting:

ncbi.nlm.nih.gov/pmc/articl...

[cappygal in reply to PMRpro]

Thank you PMRpro I wonder how different this is to a normal CT. will look into it. x

[PMRpro in reply to cappygal]

It involves a contrast fluid given by i.v. containing radioactive labelled glucose which is taken up more by the areas with inflammation.

[cappygal in reply to PMRpro]

Thank you 🙏 x

[CarolMcl]

Hi, sorry to hear you've been suffering so much. I too was told about 5yrs ago that i had costochonditris along with various joint pains on and off. I had a previous diagnosis of raynauds, raised inflammatory markers and I've just found out that my bloods have shown a positive for scleroderma for many years. It was only last January when I became very unwell with extreme lethargy, joint swelling and pain, high temperatures , difficulty breathing and chest pain, did I get taken seriously. A CT scan showed I had marked inflammation of my lungs and bloods confirmed that I have lupus . I also have reduced gas exchange in my lungs which is more than likely to do with the lupus.

Have you had blood tests? If not, insist on them as your symptoms seem to warrant them.

[cappygal in reply to CarolMcl]

Hi CarolMcl I am sorry to hear about all you’ve been through, it must’ve been really stressful and worrying for you. Are you under a MCTD specialist team? I hope they’re helping you. Was it a normal CAT scan you had, or one with contrast? Where abouts was your chest pain - was it all over? Mine varies from stinging, itching to more sharp pain. Worries me no end 😔 I’ve had blood tests including ANA negative, but what I don’t understand is why I get all this pain and also my ultrasounds showing signs of inflammation but nothing is done. I’m left to deal with joint pain and swelling, chest pain and a whole list of other symptoms. x

[CarolMcl in reply to cappygal]

Hi, yes I now have regular appointments with a rheumatologist and respiratory doctor. For many years my chest pain seemed to focus on my right side radiating from back to front. Now I also get pain as if something is pressing down on my chest causing a tight sensation. I had a CT scan without contrast. It is possible although very rare to have lupus without a positive ANA.

[cappygal in reply to CarolMcl]

Glad you are under good care with Rheumatology. I think I need to get the Rheumatology team to review my CT scan. My symptoms are similar to yours. How do you describe the pain -burning type of stinging? Yes it seems they won’t diagnose lupus without a positive ANA.

[Stephanie0210]

Before I got diagnosed with lupus these were the problems I experienced and no one knew what to do. Then after some time they realised that it was just the effects of my lupus since you know everyone experiences it differently.

In order to help me they started me off with 7 pred tablets a day and decreased it over the months in order to help with the inflammation and the pain plus they had me on pain medication but not plaquenil just yet.

Eventually the pain and inflammation decreased and I was finally happy but every now and then I have these pains reoccurring... sometimes its as bad as that first time but sometimes I can handle it. I just take pain meds and hot showers and hope it helps but eventually they will restart the pred if the chest pain comes back...

Hope this helps

[cappygal in reply to Stephanie0210]

Stephanie0210 how did you finally get help - did your bloods show inflammation? Chest pain is quite frightening and worrying. I’m always amazed at how medics can’t seem to appreciate the affect it has on mood. X

[Stephanie0210 in reply to cappygal]

I don't think my bloods showed anything. The doctors were quite reluctant on the fact that I was having chest pains and not seeing anything in the bloods.

However, a cardiologist came by and realise that I had quite an amount of inflammation when he sounded my heart and pressed around the areas and realised how bad the inflammation was.

They continued me on prednisolone for months until it cleared up.

The only times I have inflammation again is when I have flare ups but other than that it's quite okay.

[cappygal in reply to Stephanie0210]

Thank you 🙏Your situation sounds very similar to mine. Nothing showing in my bloods and I am really relying on imaging now. I am waiting for a heart ultrasound as a murmur was picked up by my new specialist and I also have an abdominal ultrasound soon. I’m just so worried that it’s been almost a year with no real help with the pain. X

[Stephanie0210 in reply to cappygal]

One thing though is to not be worried but rather persistent

The only reason my doctors didn't give in was mainly because I kept insisting on the pain in my chest until they finally sounded me

Just stay positive and it'll be okay.

I do hope you get through with everything.

[cappygal in reply to Stephanie0210]

I feel like I have to be like a dog with a (huge) bone. I’ve almost begged for imaging and now have some planned finally. I think my US showing inflammation should start getting me support 🤞 x

[misty14]

Hi cappygal

I had a ct scan without contrast that showed up some inflammation between my heart and lungs as I had suffered for years prior with terrible chest pain. This gave me the breakthru as my Rheumy suddenly said we can treat this with colchicine a strong anti inflammatory drug that's used to treat gout. If it works then you have pericarditis and it transformed my symptoms!. I'm sorry you are suffering this way too as its horrible and frightening as can be so strong!. Do hope you could be helped in a similar way!. Ask me anything you'd like about it and keep us posted. X

[cappygal in reply to misty14]

Thank you so much 🙏 It is scary and I just want the medics to explain things and help. My recent ultrasound showed inflammatory changes of my fingers and wrists so I’m now pushing them for answers and help. How have you been with the medication? X

[misty14 in reply to cappygal]

Hi cappygal

The colchicine has really helped the chest symptoms and I take steroids for the more general inflammation like your getting!. Your right to push your Rheumy's to treat you with these obvious symptoms!. Hope your seeing them soon. Can always bring it forward by asking for a cancellation. Good luck. X

[cappygal in reply to misty14]

Thank you misty14 I’ll start with asking for a review of my CT scan and then ask for my appointment to be brought forward. I’m seeing other specialists in the meantime for more ultrasounds but everything feels like it takes so long. I feel like my chest wall is being attacked and that’s not normal. You’d think they’d actually do something now one of my US scans has shown inflammation but I’m still having to push 😔 X

[misty14 in reply to cappygal]

Sounds like a good plan cappygal. Good luck for those other ultrasounds!. It can all take an age waiting for appt's and scans!. I swear the time slows up deliberately when we need it to be quickly !. Are you in US or come over from there?. Good luck and keep us posted. X

[cappygal in reply to misty14]

Thank you 🙏It’s all quite worrying and stressful, also as I don’t like seeming like a pushy patient but need to get help and it seems like the only way to get help. I’m in the UK. X

[misty14 in reply to cappygal]

I do understandcappygal, it's a tightrope to walk and not easy to get balance right but I'm sure you will !. It's good your in UK because if these other tests show inflammation the consultants can get together to decide treatment!. That's what's happened with me and Rheumy seems to be the lead one!. Is it all in same hospital?. X

[cappygal in reply to misty14]

The tests are all being done in different places but all should be reported back to Rheumatology, like you say they need to be the ones deciding on treatment. However up until recently I’ve seen junior registrars which hadn’t helped and the latest was dismissive of obvious my inflammation in my hands, so yet again I’m pushing 😔Further tests next week. X

[misty14 in reply to cappygal]

Hi cappygal

Luckily all tests can be accessedvia computer now . I've learnt thru bitter experience to stick to the Consultant!. Registrars are not the same and you can ask to see the Consultant in clinic if they put you with another registrar specially now as your having such a bad time!. Good luck next week!. X

[Joy_1]

Hi

I have UCTD with lung involvement.

My UCTD started off with a persistant cough and problems with my joints (hands and feet) came a number of weeks later. So it was obvious there was an issue with my lungs. To date my condition remains v mild.

Are you being seen by the Chest Clinic as well as Rheumatology? I am under both Clinics. I have had a standard CT Scan and it shows very clearly the damage that the RA has done. Both my chest consultant and my Rheumatologist invited me to take a look at the scans and they spent time explaining what was on the screen.

As I say the damage is very mild indeed, but you could clearly see the damage the RA had done. It appears as what they call 'glassy appearance', it looks like cotton wool.

Perhaps when the inflammation is in the early stages the inflammation with standard CT is not obvious.

[cappygal in reply to Joy_1]

I’m sorry to hear about your UCTD. I was under a respiratory specialist but he passed me over to gastro team, due to see soon. I really want to know what can be seen on a chest ct with contrast, as I now have inflammation showing on ultrasound of my hands so am really worried. Going to have to put pressure on my GP and rheumatology team. X

[Joy_1 in reply to cappygal]

Yes do shout shout shout.

I do not attend Rheumatology at my local hospital. The doc I saw there told me there was nothing wrong with me, despite swollen joints on the x-rays taken of my hands!! I saw a junior - lack of experience says it all. I told my GP and she blew a fuse and sent me to a teaching hospital outside of my area. I got seen by the Prof and the care has been v good indeed.

Good luck.

[cappygal in reply to Joy_1]

I’m in a similar position but I’ve seen too many registrars and not enough time with senior medics. I’m pushing them after complaining and feel like I still need to shout louder. The junior basically dismissed the inflammation and other changes on my US. I just wanted to scream 😔 The issue with ‘normal’ markers is nothing seems to be taken seriously. X

[Joy_1 in reply to cappygal]

Sorry to hear you have been having such a hard time.

I too have 'normal' markers. My CRP never rises above 5 and I recently worked out through plotting 5 years worth of data that I begin to flare at 4.

A couple of appoints into my time at the teaching hospital one of the juniors picked up my file and called my name. I was enraged as I felt like I was back at my local hospital talking to a junior once again. I politely told her that I did not want to speak to her and wanted to be seen by someone more senior. She was fine with that. She told me that according to the regs I could be seen by a person of my choice and that for this situation not to happen again to ask the nurse to put the preferred Rheumatologist on the front of my file. And it worked.

A couple of friends who I have met through my aqua aerobics class have been in similar situations. They refuse to see Registrars and say they are happy to wait to see the head of department. And again that has worked for them.

[cappygal in reply to Joy_1]

That’s great advice, thank you. Every time I have gone I’ve been seen by a registrar and though I’ve complained, nothing has changed. I’m going to ask to only be seen by the most senior rheumatologist. Didn’t realise that was something that could be requested. X

[Joy_1 in reply to cappygal]

Remember you may have to wait a wee bit longer to be seen by a senior consultant but as my 2 aqua pals have found it has paid off. Both in terms of answers and peace of mind. Remember to let the rheumatology secretary know that you are happy to take a cancellation.

And another helpful hint I hope - make friends with the rheumatology secretary.

[cappygal in reply to Joy_1]

Thank you 🙏 I feel much better when I’ve seen the senior rheumatologists,the registrars are just far too inexperienced to be thorough. Thank you for the tips. I’ll definitely ask about the cancellations. X