hello lyn
so sorry you are going through the mill, just wish I could wave a magic wand ....
take care
xxx

Hi everyone

Yes, still smiling ... just about!

I am waiting patiently for the CT scan which so far hasn't materialised. Made quite a few phone calls but without the necessary bit of paper with the 'i's' dotted and the 't's' crossed I'm getting nowhere fast! I mean, how difficult can it be to organise something? As time passes it is becoming more clear that whatever is wrong with me isn't anything that might be classed as 'normal'. 'Normal' would have cleared up by now or developed into something else. My hope now is that when I get the scan it will actually show up the problem and it can then be treated, even if it means no more Methotrexate ... ever!

I'm still breathless (and that's not through swooning over Danny O'Donoghue ), I have a tight chest and persistent cough. Even talking too much (who me? ) messes up the nicely established breathing patterns and then I'm coughing, spluttering and gasping for breath Not good at all.

I now have my Cimzia sat in the fridge waiting to start, delivered today with all it's paperwork and a rather nice green folder that matches my satchel to a T. Thank you very much UCB, it will come in very useful ... as will, I'm sure, the Cimzia once I can get started with it!!

Heyho, it's no laughing matter really, but crying just makes my eyes all red and sore, and messes up the breathing patterns! So, now I'm on countdown (no, not the TV programme!) for Coventry. I have to be well by the 18th otherwise I'll never be able to manage to change trains!! Ages off yet, I'll be fine If no improvement soon Julie, I'll be requesting a steroid inhaler long before then!

Lyn xx

Oh Lynn

I cannot beleive ou have not had your ct scan yet. It does seem to be a long time and because
it is your breathing that is the problem you would think those that 'do' should make it happen
sooner rather than later.

You are amazing Lyn so hope you get to feel well on the road to a good Summer very shortly.

Rose x

Hi Lyn

My goodness they are dragging their feet with this scan, and everything is on hold for you starting the Cimzia. With the way you are feeling, is there any chance they could speed this all up, tell them the Cimzia will go out of date if they're not careful !

Love Julia xx

Its now Friday and not only am I still waiting for the ruddy CT scan I have also been referred for an echocardiogram to check out my heart, just in case! On Wednesday I requested a steroid inhaler from my GP but have heard a big fat nothing. Going in to collect blood test results so will be asking again

Nearly carted myself off to A&E one night, my breathing was so bad. But thought better of it, being very familiar with our A&E!! They would probably have sent me straight back home again. Today my knees have filled up with fluid again so had to increase the prednisolone, hence I'm on the night shift once again

I go through periods of thinking it's probably nothing more than a reaction to Methotrexate but then I start to wonder, I could have TB, I could have pulmonary fibrosis, I could have cancer. I mean it could be any blooming thing, couldn't it?

Anne, the gold injections have crossed my mind, although it appears problems are more likely from oral gold. That said, I've had so much stuff over the years it could be anything! My GP suggested I see a specialist but then rheumatology kind of took it out of his hands (hence the delays!), think they wanted first dibs on sorting it out! Plus, I threw teddy out of the pram and said I was stopping methotrexate until I knew the cause! Didn't quite stamp my feet, but came close, considering the breathlessness Hopefully when I've had these two investigations done I'll be better placed to decide where to go from here. Glad to hear the Azithromycin has helped with your symptoms Anne. Have they given the problem a name or is it one of these things 'they' don't quite like to admit to?

A light sabre ... now there's a thought! Hmm, I quite fancy one of those. Off to the shops

Lyn x

Hi, Lyn,
I was diagnosed in 1991 by CT scan. I have Obliterative Bronchiolitis
which has caused shortness of breath on mild exertion. By mild I mean
going upstairs, slight slopes etc. Recently (3 months ago) I was told
I have bronchiectasis, hence the new drug. This scared me silly but have now
resigned myself to it. I got a mobility scooter last autumn which has been
a lifesaver. means I am not exhausted All the time. Please push for a
respiratory consultant review. Over the years I have found the doctors
only treat their speciality with any degree of knowledge. Take Care Anne

Thank you all for your replies and concerns. I appreciate it very much.

I have now got appointments for both a CT scan and an Echocardiogram at the end of next week. As time has marched on I have become significantly worse; takes me at least two but more usually three stops before I can get to the top of the stairs, and even then I have to sit down and get my breath back. Laying down causes more problems with my breathing and trying to sleep propped up seems to put unnecessary pressure on already inflamed joints. Really fed up with it and just wish it would disappear. The worse thing is the 'not knowing' what it might be. Will be glad to have some answers!

I have asked about a respiratory consultant and my GP says he will refer me if the scans suggest this is the way forward. At the moment rheumatology seem to think it's their 'bag', goodness only knows why!

Lyn xx

Thank goodness you have appointments and I hope after these you'll at least know what's going on and be able to start treating whatever it is or stopping whatever is causing it. I can understand how worried you must be. I was completely freaked out last year with mine....well breathing iS pretty essential isn't it. Reading your last post reminded me of my experience and I too was so out of breath after going up stairs you'd have thought I'd sprinted 100 metres (not exaggerating!) and I too found sleeping sitting up helped a bit. My breathing is fine now and I hope that yours will be soon too. Please let us know how the tests go as I've been wondering and worrying about you and want to know the outcome, as I'm sure all the others do too. Good luck, best wishes from Naomi.

Thank goodness! About time that you had these scans. Shocking wait! Lets hope that you get a diagnosis and some kind of treatment that works! Sending love to you Lyn. xxxx