Chest pain

[jeannette65]

Does anyone get chest pain and breathlessness. Im worried this is down to my vssculitis and aorta. Have been diagnosed with GCA and vssculitis since January I'm on pred 12.5 tapering down from 60. My pet scan showed that the inflammation was round the aorta. Don't want to contact Rheuemy uncessarily because he might put the steroids back up. I've been having such bad side effects from the pred. I'm not sure this might be a flare? Any advice would be helpful. Hope you all have pain free day😀😀😀

[PMRpro]

If you have chest pain and breathlessness and your diagnosis is GCA and vasculitis that is affecting the aorta then you really must contact your doctor as they could very well be associated.

I know the side effects of pred are unpleasant - but to be honest they aren't as bad as some of the things that can happen if GCA/vasculitis in the chest is ignored. You could become very poorly if it were left without treatment.

Do please contact your rheumy.

[jeannette65]

Thanks for that . Don't want to worry my family unnecessarily they worry enough about me now. I've got my monthly infusion of tocilizumab on Thursday and will ask to see Rheuemy then. Have a good day.

[orsen-trapp]

Yes, when inflammation active. PET scan showed inflamed ascending aorta and diagnosis was TAK (another LVV). Heart was also enlarged and swimming! Either see GP straight away, or if waiting until Thursday take things EASY!! How bad are your pred side-effects? You seem to be tapering pretty fast. I know what you mean about not wanting to tell your rheumy in case they say to up the steroids. Unfortunately I can't get away with that sort of thing as mine looks out for my fortnightly bloods results

[BronteM]

I'm another TAK patient, with similar problems to Orsen-trapp. It seems to me that you are tapering your prednisone quite fast, and this could be causing some of your pain and breathlessness. I started on 60mg of steroid in January 2012, and was still on 20mg that autumn. Even now I can't get below 4mg a day though I'm longing to get off it completely. It's not great stuff, but the alternatives are worse, so if you do have to shift the dose up, I think you have to look at it from that angle.

Where is your pain? In the front or behind in your back? Mine starts in my back when I'm overdoing things, and echoes into the front if I ignore the warning that my back is giving...it's at about bra strap level. I've had an echo-cardiogram, lots of ECGs etc, and the clinic are sure that it's caused by the inflammation in my aorta. It can be quite scary!

Hope you get a positive answer on Thursday. Good luck

[orsen-trapp in reply to BronteM]

Do all your ECGs look normal, Bronte? Apparently mine do. Still awaiting results of echo I had earlier this month ... taking longer than usual. I've had the bra-strap pain too from time to time. Also awaiting use of 48 hr mobile heart monitor but there's a long queue!

[BronteM in reply to orsen-trapp]

No they don't! But Papworth think that my heart problem is inherited and not part of my Vasculitis. I've an electrical fault that gives each wave an extra little tick, especially if my heart rate is a bit high. The consultant said I could have an operation, (he said it was one of his favourites?) but he thought it more important to concentrate on the larger problem.

I did wear a monitor for 48 hours last summer, and deliberately over did things to get the pain really started. I wrote down the timings, but It didn't show up on the monitor at all...

[jeannette65 in reply to BronteM]

Sorry to sound thick but what is TAK? This is all new to me but the my Rheuemy hasn't mentioned that. As far as I know I only have RA and vasculitis but that's enough thanks. When I was first diagnosed with RA 11 years ago o thought I can beat this but it's all the extras that's the problem. When I was told about the vasculitis my husband and I didn't really realise how serious this was or as life changing. So no good moaning about it just get on with it lol

[BronteM in reply to jeannette65]

Sorry, we shouldn't use jargon, as it is difficult for people who have just been diagnosed. It's short for Takayasu's arteritis, one of the large vessel Vasculites - but you must admit it's a bit of a mouthful!

[orsen-trapp in reply to jeannette65]

I know how you feel Jeannette. I had a diagnosis of ulcerative colitis, which was fine - I could live with that as my mum has it so I know what's what, then I got more ill than the UC should have made me. Then they rediagnosed it as Crohn's, which isn't so good, then the big hospital found the inflamed aorta and diagnosed Takayasu's. GCA was a possibility, though.

[jeannette65 in reply to BronteM]

Thanks for info. The pain is in the front of my chest it feels like a very heavy weight on it and it's hard to breathe. It's mainly if I am over exerting at the time or when I bend over or lie flat. It's very frightening. I also get a warning pain in the back to ease up but that's where I got two fractures of the spine from the 1000 for 2days of steroids. will see what happens Thursday. Have a good day x

[BronteM in reply to jeannette65]

That does sound rather scary. I think you should take everyone's advice and not do anything like bending until you've talked to your rheumy. Though not laying flat might be a bit of a puzzle!

[orsen-trapp in reply to jeannette65]

In your situation, I'd see the GP immediately and maybe ask for a chest x-ray. My lungs got involved when I was flaring and was diagnosed with pneumonia (which wasn't in the end) twice.

[Rowmarsh]

I think an urgent referral to a cardiologist is required. I suffered for four years with breathlessness, palpitations and dizziness but it was ignored. Now I have cardiomyopathy related to Churg Strauss Syndrome. You need to push for a cardiac referral as soon as possible in my opinion.

[amms43 in reply to Rowmarsh]

I agree with this. Don't wait. If it is your aorta and you have GCA it can go wrong very seriously and very quickly. My suggestion would be GP today and cardiology or A&E if it has got any worse.

[Lucywhiton]

Hi, Yes I have chest pain this time round. I have been in remission for 5 years on low dosed of steroids and aza. . I had a flair up in Jan and spent 2 weeks in hospital. They put my steroids up to 60mg and my aza up to 200mg. I have microscopic vasculitis, I had a CT scan last week. I was in the tunnel for over an hour. They said they took over a 1000 images. I should get the results this week. My specialist said the inflammation could be in the sack that the heart sit in. My medication is going to be changed in the next couple of weeks depending on the outcome of the scan etc. I will get back to you later in the week or when I get more information. JW

[jeannette65 in reply to Lucywhiton]

I hope you get good results from your ct scan brilliant how much they show. I'm going for pre infusion blood test today so Rheuemy will be looking at them today I hope and if my inflammatory markers are up he usually ring me. Keeping my fingers crossed 😀