Newly diagnosed and need advice about Ank Spo!

Chocoholic

Hi all
I was diagnosed in March with Spondyloarthritis and have been told two weeks ago that I have Ankylosing Spondylitis.
I could really do with some general advice please.
My history is I have only just tried Naproxen and while I was on it became breathless so put it down to that. I am breathless on and off now and not on anything. My rheumy thinks I have Costochondritis which would explain the breathlessness I think? My GP sent me for a chest x ray four weeks ago when I was getting pain in my chest and back which now my Rheumy says is the Costo, but the chest x ray came back with 'possible consolidation suggesting infection'. I was put on antibiotics and have had another x ray this week which I'm waiting for the results for. I have so much going on at the moment and am feeling quite worried about it all. My GP doesnt want me to take NSAIDS as I'm breathless and has scared me to death about the side effects. My rheumy suggested Diclofenic which the GP said no way to. I just want to start feeling human again and wondered if anyone can shed any light? Ive read about Ank Spo causing Lung fibrosis or scarring and am terrified what that means. Any advice would be great thank you x

maria09

Hi
I have a similar diagnosis I too have costocondritis which ended up with a visit to AE dept having ECGs chest X-ray's blood test the lot! I did keep telling them its not cardiac but they ignored me long story but I must say its quite painful I still get the pain but its never as bad as that 1st time when I told my Rheumy about it he said yes all to do with your condition! He should have told me that! Then wouldn't have been stuck in AE all that time
Its trial and error getting the right drugs to suit so 4 years down the line mine now seem to be working
One question are you a smoker? Is so I'd advise to stop now I've never smoked so my lungs are pretty clean and breathing wise I'm ok all though the pain catches me at times but I try and breathe through it and get my intercostal muscles working and my breathing is good occasionally I get breathless but not so bad that it stops or scares me
Hope that helps a little if you have any questions you can PM me
Once again welcome
Maria

stickywicket

Mine's RA so I can't help much on the AS front except to suggest you read Arthritis Care's leaflet on it http://www.arthritiscare.org.uk/PublicationsandResources/Arthritisbasics/Typesofarthritis

If you can't take NSAIDS then you can't take them whether nap or diclo. There are other meds though which your rheumatologist could prescribe ie DMARDS but not while you are having lung problems. I hope the antibios will do their thing quickly and then you'll probably find you can start to tackle the AS.

Chocoholic

Thanks for replying.
No I don't smoke and never have so I was surprised to have something on the x ray when I had no symptoms of a chest infection.
I guess I'm just worried that the as has got hold of my lungs already when I've read it's generally after a while that can happen. Just scared of the future I suppose. Also I don't know if the breathlessness is from the as, costo or NSAIDs! X

Chocoholic

Ok so my repeat chest x ray was clear so that's good yes?
Still nervous about trying NSAIDs as I'm worried about being breathless. But I feel I haven't really given them enough of a try x

dreamdaisy

I am not a doc but has anyone tested your peak flow for breathing? It's a test for asthma. I have asthma, I've had it since aged 7 and it's now well-controlled by the arthritis meds and inhalers. I find my breathing deteriorates in low pressure weather thanks to the presence in the air of various mould particles, namely phoma, altenaria and soporobolomyces. Doing household dusting is also a trigger (which is why I damp-dust). Keep a note of when your breathing troubles you, what you are doing at the time and the weather conditions. It can't do any harm to try and find a link, no? DD

Chocoholic

Hi dreamdaisy
My peak flow is rubbish just under 400. That's only recently I don't know if it's always been like that xx

Chocoholic

Should also say my lungs are clear, oxygen output is 99 x

stickywicket

So, the chest x-ray is good and the lungs are clear.

I have what I consider to be only mild asthma and I don't think my peak/flow has ever hit the dizzy heights of 300 so I've no idea how good/bad 400 is.

In your place I think I'd go back to the GP and see how he felt about NSAIDS now that the chest seems clear. It's kind of swings and roundabouts for most of us. We take our meds and we choose what to suffer from :roll:

Chocoholic

Thanks stickywicket.
The rheumy says I have costochondritis which could be the breathlessness. Will go back this week and see what they say x

As5567

I have AS, when I'm having a real bad time I often feel like I'm unable to breath tidy. I'm not sure what the test is but every 6 months or so they measure how much my chest expands when I inhale a deep breath. I think it's fairly common to feel like it if you have active inflammation around the rib cage area

stickywicket

Given that your chest is clear and the rheumatologist is happy for you to have diclos or some other NSAID, I think your GP might be OK with them now. I believe they are a 'normal' prescription for costochondritis.

dreamdaisy

Right, so asthma may not be the trouble after all. I did my peak-flow earlier and reached the giddy heights of 400 - I haven't done that in a while. Given that your diagnosis is a fairly recent one I doubt that scarring will have had a chance to set in but I am not a doc. I have developed OA as a result of the joint damage from my auto-immune arthritis but that took years to develop. If you are given another NSAID to try please ensure that you also have a stomach protector such as lansaprazole or omeprazole - they are essential. DD

barbara12

Hello and welcome to the forum,sorry I cant be of any help but I do hope you get something to help the pain very soon.x

Chocoholic

Thanks all, I really appreciate the replies. It's great to talk to people who know how I feel. I really just want to get on some meds now and start feeling myself again. It's been so long. But the gp has terrified me so might talk to her about trying naproxen again.xx

dreamdaisy

I've learned over the years to do the following: read the side effects leaflet once then put it away. If things start feeling a little odder than usual then - and only then - will I dig out the leaflets and re-cap to see if a med could be to blame, and if I think so then contact either my GP or my rheumatology department. I believe that one can talk oneself into feeling odder than usual, I take the approach of blithely assuming all will be well (and it usually is) probably because I have been on medication of many types since the age of 12 (I am now 54). DD

[Deleted User]

I don't know if that helps, but I agree with AS5567. Right now in the middle of a flare I don't breathe as usual. AND I had asthma as a child, so I know the difference in between the two sensations. Since your lungs seem to be ok, it is probably a problem related to the inflammation and the weather may play it's nasty game as well. Plus you are stressed, are you not?

Chocoholic

Good advice regarding side effects thank you. Xx

I agree with you about the weather and yes i am stressed! Xx

[Deleted User]

So simply stop being stressed ! (Says who? ) No,but seriously: I think we somehow have to find a modus operandi to simmer down from time to time. I assure you that MY AS is getting really nasty when life is getting really nasty. And as nastier your AS gets, the easier it is for life to get nasty. The waves are up and your defense lies low. Personally I have not yet found the way to ZEN. But we should work on that asap.

dreamdaisy

The side-effects advice takes years of practice. I hope you can count your lucky stars that you don't have as much as me, yes?

I too have had a stressful year (emergency op on belovéd spouse, death of a parent, very sudden death of a cousin, house clearance post-parent's death and selling of said house) and my arthritis has been completely unreasonable (despite meds and much resting). These conditions thrive on stress, in the same way that children thrive on attention and weeds thrive in a neglected garden. DD

Chocoholic

Some great advice there, and you're right it does get worse with stress. The only thingies been stressed about tho is feeling ill and not getting the meds. I'm frustrated with gps and found it all very tiring.

So am I right in thinking that lung scarring is a long way down the road? I've been diagnosed with imflammatory arthritis since March but had the pain for a year before. I am worried about my lungs in the future but tests seem ok apart from peak flow x

[Deleted User]

I think you should stop worrying about your lungs, since they seem fine. Wait until the flare calms down. I could imagine that your respiration will be back to normal then. And future lung scarring is not a 100% certainty, as far as I was informed.

dreamdaisy

Caliban is spot-on, but it is difficult not to fret when one is new to this malarkey. My arthritis went unrecognised and thus undiagnosed for five years, once it was being taken seriously it was classed as an inflammatory arthritis, it wan't until nine years after the initial set of troubles was it labelled as PsA. Nothing else changed, just the label.

It may not seem as though things are moving for you but they are. Auto-immune arthritises are many and varied, and sometimes very hard to diagnose. You are moving in the right direction. DD

Chocoholic

Thanks all for the fab advice xx

Chocoholic

Update for u, gp is still saying I shouldn't take naproxen as I could have a reaction to it. Absolutely fed up with mixed advice now. Seeing rheumy next week who will say take it x

maria09

Hi
Now that's a dilemma had your GP any evidence that you will react to the Naproxen? I could understand if you were asthmatic
Could they not put you on a different NSAID will less side effects
I think you should raise this with your rheumy
Hope all goes well
Maria