Lung complications

As5567

Has anyone ever experienced any lung complications due to their arthritis? I went for an x ray of my chest around 9 weeks ago as part of the checks before starting a new TNF drug, this x ray shown shadows on my left lung. I then went for a 2nd chest x ray which shown the shadows had got much larger and spread to around 1/4 of my lung. After having antibiotics and a 3rd x ray I now have shadows on my right lung also. My doctor keeps giving me antibiotics and treating it as an infection, I am positive this is not the case and I don't feel unwell in that type of way, a family member of mine who's a doctor also agrees that if it were to be an infection I'd be feeling it by now after 9 weeks.

Anyone had any experiences like this? I also have an x ray report which says the shadows are due to poor chest movements/expansion. I'm also waiting for a scan which isn't until August. Until this is sorted I won't be able to start my medication and feel like my doctor isn't really putting in all the effort except treating it as an infection without even doing any tests to prove that.

dreamdaisy

Contact your rheumatologist, surely they should be in touch with you regarding this as they requested the Xray in the first place? DD

stickywicket

I can well understand why you feel as you do though I have no experience of this. I have asthma, that's all, though, after a routine chest x-ray a year or so ago, I was told I had COPD. I queried this as I haven't smoked for over 40 years and not much when I did and I've never worked with substances dangerous to the lungs. My doc then agreed that I probably didn't, just some mild impairment of lung function due to my mild asthma. I only take meth and hydroxy. I think, in your case, I'd want someone to explain things more fully to me.

As5567

dreamdaisy wrote:

Contact your rheumatologist, surely they should be in touch with you regarding this as they requested the Xray in the first place? DD

My Rheumatolgist the one who's the actual problem. She just says it's an infection and tells me to take antibiotics. I did ask her about chest complications around 4 weeks ago but she told me there isn't such thing with AS, my internet research disagrees and I'm due to see her at the end of this week so I'm trying to gather as much information as I can to try and convince her to look into other things.

stickywicket wrote:

I can well understand why you feel as you do though I have no experience of this. I have asthma, that's all, though, after a routine chest x-ray a year or so ago, I was told I had COPD. I queried this as I haven't smoked for over 40 years and not much when I did and I've never worked with substances dangerous to the lungs. My doc then agreed that I probably didn't, just some mild impairment of lung function due to my mild asthma. I only take meth and hydroxy. I think, in your case, I'd want someone to explain things more fully to me.

I really wish there was another rheumatolgist I could see because mine never seems to be interested and she always seems to be in a rush and has very little time to even listen to me let alone explain things in detail. I am due to see her Friday after finally getting hold of the helpline after 3 weeks so I will be asking a lot of questions this time and want a clear explanation. If I don't have an infection then I can resume my meth which I assumed wasn't doing very much for me until I stopped it, since then I have had terrible neck, shoulder and knee pain so perhaps that was doing some good.

barbara12

Hello As5567
If I was you I would ask to see someone else over this,they shouldn't just keep giving you ABs like that without really knowing what is going on..
And I would ask to see a different rheumy if you are not happy..not easy I know but you give it a go...good luck

Starburst

Do you have a good relationship with your GP? Sometimes I find they are helpful for a neutral opinion and a chat. I understand your frustration, it's not easy when a consultant doesn't think outside the box. It's easy enough to say there isn't such thing but when it's happening to you, you do tend to feel less convinced! I hope your appt is helpful and that you get answers.

Boomer13

Hi;

There is a fibrotic lung condition associated with seronegative arthritides. I think it shows up as nodules rather than shadows.

I think Starburst's suggestion could be very helpful if you have a good communication with your GP. I remember your rheum troubles lately, but I can't remember what you said about GP.

It's unfortunate that we often have to wait, seemingly endlessly, for specialised scans for these things. It really can feel endless when the arthritis is fully active.

Best wishes, maybe you can get a cancellation appointment for your scan and bump it ahead from August? I hope so.

Anna

dreamdaisy

My apologies :oops: : when you wrote 'my doctor' I assumed you meant your GP. DD

As5567

barbara12 wrote:

Hello As5567
If I was you I would ask to see someone else over this,they shouldn't just keep giving you ABs like that without really knowing what is going on..
And I would ask to see a different rheumy if you are not happy..not easy I know but you give it a go...good luck

I have asked to see another consultant and I'm still waiting for an appointment letter to come, but like everything else at my hospital things seem to take a very long time so I suspect I will be waiting for a long time still.

Starburst wrote:

Do you have a good relationship with your GP? Sometimes I find they are helpful for a neutral opinion and a chat. I understand your frustration, it's not easy when a consultant doesn't think outside the box. It's easy enough to say there isn't such thing but when it's happening to you, you do tend to feel less convinced! I hope your appt is helpful and that you get answers.

I do have a good relationship with a new locum at my gp place and she has been very helpful over the last few weeks. If it wasn't for her then I'd most likely still be waiting for the helpline to even contact me back, let alone get an appointment with the consultant. I haven't really spoken to her about my chest for the last 6 or so weeks, and back then she said it sounded clear so its unlikely to be a bad infected if it is infected but my oxygen level was a bit lower than it should be but without the actual x ray scans she was unable to give me more details and told me to call the helpline asking to be seen asap.

Boomer13 wrote:

Hi;

There is a fibrotic lung condition associated with seronegative arthritides. I think it shows up as nodules rather than shadows.

I think Starburst's suggestion could be very helpful if you have a good communication with your GP. I remember your rheum troubles lately, but I can't remember what you said about GP.

It's unfortunate that we often have to wait, seemingly endlessly, for specialised scans for these things. It really can feel endless when the arthritis is fully active.

Best wishes, maybe you can get a cancellation appointment for your scan and bump it ahead from August? I hope so.

Anna

From some internet research there's a few things that can affect the lungs. I think this line describes exactly how I feel and possibly why I have shadows on my lungs "Poor chest wall movement may result in decreased vital capacity and a few patients develop scarring or fibrosis at the top of the lungs detected only by routine chest x-ray" I can only take in small shallow breaths of air otherwise my whole back and chest will go into a spasm, I will see what my doctor says about this on Friday but I'm not very hopeful for her to actually listen for once. We shall see.

I could also get a scan much sooner, I know so its just a matter of my doctor filling out the paper work as urgent, which I guess I'm not.

mamasmurf

My daughter has been diagnosed with I L D , interstitial lung disease connected with R A . Her specialist has said that this is extremely rare indeed though so I am not suggesting this is so in your case ; just that you should check things out .
mamasmurf

Boomer13

If your arthritis is active, as well as developing these new symptoms, it seems urgent that you get started on your new drug ASAP, now that they have ruled out infection.

I know, urgent often means "life-threatening" not "suffering in endless pain"

Sorry I can't be of more help.

salamander

Hi, I've got some lung problems, apart from asthma, which are unexplained but probably due to RA, according to my chest specialist. My rheumy referred me to him as I got a lot of chest infections whilst on meds. I suggest you could ask for a referral to a lung specialist.

DebbieT

Hi,

I agree that a referral is needed to the respiratory team.

I was sent to ours as the last few months on mtx last year I was constantly taking steroids & antibiotics.

Do you have a cough & if so are you bringing anything up? If so ure GP can send it away for testing. Mine was & a good job too as my repeated infections were drug resistant strains!! :?

I'd definitely see ure GP if ure Rheumy fobs you off again. Good luck for Friday.

(((Hugs)))

Xxx xxX

Cariad71

Hi,

I'm sorry again to hear of your ongoing problems with rheum etc

I thought lung/chest wall problems were very well documented with AS?!! I haven't actually been diagnosed with AS myself but my sister has it and I have some features of it along with the peripheral joint symptoms but luckily none of the permanent/chronic spinal changes yet. Recently it was definitely affecting my rib/chest area which leads me to be short of breath. Both rheums I've seen and every physio I've seen has agreed that it is due to the arthritis! I've been told mine could be inflammation where the ribs join the spine (enthesitis i think) or even inflammation between the ribs (can't remember if its chostocondritis or something else). So I'm surprised your rheum is suggesting it's not related particularly as you have diagnosed AS? Surely it's a sign that things are progressing for the worse without you being on meds. as you know I'm not a doctor though...

I know we were under the same consultant before which we were happier with, and I know this is a long shot and may not be affordable but have you considered paying to see him privately? Maybe if you paid for the first consultation he would see how desperate you are to be back under him and reconsider, it would give you a chance to explain all the problems you've had to someone sensible who knows your history. It was something my sister suggested I do when I was unhappy about being moved, although I haven't had half the problems you have (yet!) as a result of repatriation.


Keeping everything crossed for you to have a bit of luck soon

As5567

salamander wrote:

Hi, I've got some lung problems, apart from asthma, which are unexplained but probably due to RA, according to my chest specialist. My rheumy referred me to him as I got a lot of chest infections whilst on meds. I suggest you could ask for a referral to a lung specialist.

If there is no progress on Friday then I think I will ask my gp to refer me as I know my consultant wont. How were you after seeing a chest specialist?

DebbieT wrote:

Hi,

I agree that a referral is needed to the respiratory team.

I was sent to ours as the last few months on mtx last year I was constantly taking steroids & antibiotics.

Do you have a cough & if so are you bringing anything up? If so ure GP can send it away for testing. Mine was & a good job too as my repeated infections were drug resistant strains!! :?

I'd definitely see ure GP if ure Rheumy fobs you off again. Good luck for Friday.

(((Hugs)))

Xxx xxX

I have no cough or anything along the lines to suggest I have an infection. The only thing that I have that's wrong with me is extreme shortness of breath while moving around, my oxygen level on one of those finger readers was 92% last time I had that checked.

Cariad71 wrote:

Hi,

I'm sorry again to hear of your ongoing problems with rheum etc

I thought lung/chest wall problems were very well documented with AS?!! I haven't actually been diagnosed with AS myself but my sister has it and I have some features of it along with the peripheral joint symptoms but luckily none of the permanent/chronic spinal changes yet. Recently it was definitely affecting my rib/chest area which leads me to be short of breath. Both rheums I've seen and every physio I've seen has agreed that it is due to the arthritis! I've been told mine could be inflammation where the ribs join the spine (enthesitis i think) or even inflammation between the ribs (can't remember if its chostocondritis or something else). So I'm surprised your rheum is suggesting it's not related particularly as you have diagnosed AS? Surely it's a sign that things are progressing for the worse without you being on meds. as you know I'm not a doctor though...

I know we were under the same consultant before which we were happier with, and I know this is a long shot and may not be affordable but have you considered paying to see him privately? Maybe if you paid for the first consultation he would see how desperate you are to be back under him and reconsider, it would give you a chance to explain all the problems you've had to someone sensible who knows your history. It was something my sister suggested I do when I was unhappy about being moved, although I haven't had half the problems you have (yet!) as a result of repatriation.


Keeping everything crossed for you to have a bit of luck soon

Well the funny thing is my new doctor says I don't have AS and I'm too young to have any defined form of Arthritis yet......I'm currently a text book example of an AS patient without any medications at the moment. My back is bent forwards and I can't stand up straight, my head is stuck looking towards the floor while I walk and I have extreme muscle cramps all around my back and chest area. I was also told by the old doctor that I have enthesitis of the rib area which I believe is inflammation of the tendons and what ever else is in that area.

The suggestion of seeing my old doctor privately might be a good idea to see if he has any authority to move me back. I don't feel safe at this new hospital with the lack of medical notes built up over 10+ years and the fact I seem to have a poor relationship with this doctor is just a recipe for disaster, I feel that at some point something is going to be missed and then something will go wrong. Or I will be asked to undergo more unnecessary tests because they have no medical notes!

kellerman

Oh dear. You really shouldn't be taking antibiotics for this length of time anyway. I really don't understand any doc prescribing them unless its known for certain you have an infection and even then if one course has no effect then definately other reasons for these shadows should be looked for.If you don't get any result on Friday then definately see a decent GP.
Please let us know how you get on.May x

salamander

As5567 wrote:

salamander wrote:

Hi, I've got some lung problems, apart from asthma, which are unexplained but probably due to RA, according to my chest specialist. My rheumy referred me to him as I got a lot of chest infections whilst on meds. I suggest you could ask for a referral to a lung specialist.

If there is no progress on Friday then I think I will ask my gp to refer me as I know my consultant wont. How were you after seeing a chest specialist?


I've been better, mostly to do with upping my inhaler use and having antibiotics at home to treat an infection quickly. My lung consultant is very good and reassuring.

Starburst

As5567,

If you don't mind me asking, how old are you? I wonder why your rheum thinks you are too young to have a conclusive diagnosis or is it just because they are unsure as you have an overlap?

Since I found out that I have SI joint inflammation, I looked at the NASS website and read their LONG booklet and exercise. It did clearly say that lung issues are associated with AS. Can you take this info to your rheum and ask?

Cariad71

Starburst is right, I also look at the NASS stuff sometimes.

I can't believe your dr has said you're too young for arthritis?! Do you mean your rheum? If so, surely they know autoimmune arthritis can strike at any age? I was 21 when I was diagnosed and I think my sister might have been about 25 when diagnosed with AS but some people are diagnosed as children. It's the kind of comment you get from joe public when you try to explain what's wrong with you but a consultant rheumatologist?! Is he for real?!!

like I say when my ribs/chest is affected I get short of breath, probably nothing like to the extent you've got it though. I think enthesitis is inflammation where ligaments insert into bones, and the pain sometimes feels like exactly that, sort of where the ribs join the spine at the back.

As5567

I'm 23 years old, my old rheum said I had AS when I turned 18. He also did a blood test to check for a gene which gave a very high probability of it being AS given my symptoms etc. The new doctor is just saying we have to wait to give a firm diagnosis and cannot be rushed into doing that....my old medical notes which are missing from a hospital move holds over 10 years of medical history which will back up my old consultants diagnosis.

I also had an appointment with my new rheum today which was a total waste of my time, the appointment was to discuss the most recent x ray and to try and get things moving regarding my new medication....well she didn't have the x ray to hand so that really annoyed me, and then she told me its probably down to my weight and I should lose weight ........ I'm starting to see a worrying trend here everything that's said is "probably" just like I probably had an infection. Granted I am overweight and that is something I have been trying to fix but that's not so easy while on pred and not being mobile. I now have to wait 2 weeks to see her again which also really annoyed me further. In the meanwhile I guess I will try to lose weight and hope the shortness of breath goes away.....