How do I request tests? : I've had a bad chest on... - LUPUS UK

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How do I request tests?

cathylou
cathylou

I've had a bad chest on and off for years. I've had bronchitis, coupe, neumonia, dozens of infections. When I'm bad Dr's say I have asthma but when I'm well I'm fine! Im on third lot of steroids this year for y chest and it was so bad I was taking 60mg initially and am currently weaning down every 3 days. Today I started 30mg and my chest is really tight and back to coughing a lot. I don't understand how it's still problematic 4 weeks on. Before the lupus/uctd diagnosis it was queried I aybe had allergies setting off inflammation as bloods showed inflammation but no infection. So now I'm wondering if I have inflammation in my lungs caused by lupus/uctd. I had an x Ray in May which was OK I believe. Is there a test I can have that would help the Dr's know if it's inflammation caused by lupus and if so how do I go about querying it. I have a fair bit of chest pain but my gp thinks it's probably muscular but I worry it's my heart. I don't want to sound neurotic but at the same time I want to get to the bottom of it. Any advice would be appreciated xx

17 Replies

you shouldn't have to ask bless you. e.s.r. blood test shows inflammation as my result is 57 was 72. I have fibromyalgia and sjogrens. big hugs and hope you get well soon.. xx

I am sorry to learn that you are so worried about your symptoms and suggest that you ask your GP for a second opinion. The only other avenue to take is having private tests. Worrying is not going to help so first make an appointment with your GP. and ask for a second opinion. Good luck.

cathylou
cathylou in reply to Dessi72

Everything else lupus related is hard enough with children but now my chest is so tight it makes playing with them almost impossible - not mention getting them ready for school! I'm going to go back to gp as you suggest x

Dessi72
Dessi72 in reply to cathylou

I am pleased you have taken my advice to go back to your GP and ask for a second opinion which he shouldn’t refuse. You have a right to a second opinion. Do you attend a Lupus Clinic?

Maybe push for a CT scan of your lungs. Best wishes x

I had chest pains 2 years ago and thought it was pleurisy which I had had before it turned out to be blood clots in my lungs because of "sticky blood" caused by lupus. I'm now on blood thinners. might be worth getting a doctor to check

cathylou
cathylou in reply to suzannah16

Was your chest tight too? X

suzannah16
suzannah16 in reply to cathylou

yes really painful and hard to breathe, i'm fine now so if it is clots the tablets really work and for once no side effects unlike all the other medication

Hello cathylou

From what I gather, the most useful investigation is likely to be a CT scan. According to a 2014 review paper on interstitial lung disease (ILD - which is one of the main lung conditions associated with systemic auto-immune conditions), "...CT of the thorax can provide invaluable information that strongly supports a specific diagnosis...Indeed, the HRCT has become a standard test for the evaluation of patients with possible ILD"

Why not voice your concerns with your clinicians and ask them directly why a CT scan has not been considered. They may have a perfectly good reason, but then hopefully that will be some reassurance. x

This may not help because I don't have your difficulties, but when I was diagnosed ( with something AI) I had a full physical MOT which included what I think was called a pulmonary function test. Would that be worth a mention?

Well I went back today, gp sees me quickly when I mention breathing problems haha!

She arranged for me to be reviewed by rheumatology on 30th Oct instead of next February. She thinks the hydroxy is causing bronchospasms. I will be mentioning the tests suggested when I see the rheumatologist. In the meantime I've got more blood tests tomorrow xx

KayHimm
KayHimm in reply to cathylou

Good you went to your doctor. And the rheumatologist will also be helpful in sorting things out. Interesting about the medication causing bronchospasm. Remember to go to your doctor when you are having this level of pain and breathing problems!

Cathy — you have reason to be concerned. I have seen how frightening asthma can be. It breaks my heart to see my niece trying to breathe and with flaring nostrils. My sense would be that your g.p. thinks based on your presentation that your asthma is causing your pain and tightness. People with autoimmune disease have very reactive systems so he may not be surprised by your asthma. I think the best thing to do is ask for a pulmonary consultation. The pulmonologist will possibly better manage your asthma as well decide if further tests are necessary. They would know a lot about how lupus affects the lungs. Really hoping you you get more effective treatment soon.

cathylou
cathylou in reply to KayHimm

I don't trust my rheumatologist tbh. Despite fulfilling criteria regarding symptoms and bloods and actually telling me it's lupus, refuses to put it in my notes as anything other than uctd when I queried it she said it was the same thing. Despite me having already had serious lung issues they have refused to do anything other than x Ray. Not hopeful really. I'm going to try to be more assertive this time but it's not something I'm great at! But I am reaching my limit now. Xx

That makes it hard when you don’t trust your doctor. There is nothing wrong with telling her you do not feel your respiratory symptoms are well-controlled and ask if she thinks a pulmonary consult would be helpful. I have been in a similar position concerning diagnosis. I may be able to help you with that, so feel free to message me.

Does/can hydroxy cause anaemia? And do steroids affect blood results such as esr and crp etc? Xx

Well I was wrong about my rheumatologist. She sent me straight to x Ray, did blood tests, and has ordered a ct scan and referred me to pulmonary.

She said the hydroxy isn't working and when I become infection free she will start me on mycophenolate.

She scared me with how seriously she took everything - grown accustomed to being ignored! She thinks the disease as she called it is progressing. I'm now back on antibiotics and 30mg steroids but my chest seems worse, not sure if that's a sign the antibiotics are working? Or should I consult someone?

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