Lung Progress

[whisperit]

It's almost exactly a year since I was diagnosed with UCTD and interstitial lung disease and started on Hydroxycholoroquine and prednisilone. Its hasn't been the best of years, and I've had to accept ill health retirement as a result.

However, my breathing is the one problem that does seem to have improved, so I was keen to hear my respirologist's verdict at my review this morning.

It appears that the inflammation has all but gone completely, leaving just a very small area of bronchiectasis. He was very pleased, and so am I!

The plan now is to begin physio to get my deconditioned muscles back (and to get rid of some of the stone-and-a-half of fat I've put on). At the same time, he's happy for me to try a slow steroid taper. So despite my blue fingers this afternoon (is it chilly where you are too?), things are looking up.

Mx

[EOLHPC]

YAYAYAY Mike 👏👏👏👏👏👏

Great news! Many thanks!

You've been through an awful lot....the effort is truly beginning to pay off 👍👍👍👍

Super time of year to get into rehab (rebirth 😉)

I hope you can hook up with a senior physio who has worked with complex patients before...my 🦉rheumatologist urges me always to request the most experienced physio in the team...this tactic has made all the diff for me

Am looking forward to your next update

🍀😘🌷🍀😘🌷 coco

[whisperit in reply to EOLHPC]

As usual, coco, you are right on the nose there. I've had loads of different physios since my femur break 4 years ago, and the differences between them is striking.

Thank you for your encouragement too - I would have been in a much worse place now if not for you and the other stars here on the forum x

[Lupiknits in reply to whisperit]

Excellent whisperit 🍾🍾💐 you're really getting somewhere x

[whisperit in reply to Lupiknits]

thanks lupiknits. Hope it continues x

[EOLHPC in reply to whisperit]

🤗🤞✌️🐝🏋🏻‍♀️🤽‍♂️🌈🍀😆

[whisperit in reply to EOLHPC]

Coco - I've been meaning to ask - where do you get all your emoticon things from?

[EOLHPC in reply to whisperit]

😆 they're just there on the iPad...am ultra basic at using these gadgets...the iPad doesn't hide emojis away (I can't even begin to find emojis on our iMac 😉)

[whisperit in reply to EOLHPC]

Oh...I'll have to make do with my and then x

[EOLHPC in reply to whisperit]

They're lovely 😉

[Fennella02]

That's such good news about your lung improvement - I'm very jealous. I'm hope your Consultant will continue to keep you under review?

I had physio a couple of months ago - both privately and on the NHS by coincidence. The NHS physio was lovely but, for my £50, the private physio was far more on the ball. He gave me over an hour of assessment and therapy and has since kept in touch via phone and email to monitor progress - regardless of whether I return for further appointments. Sometimes that extra bit of time is very beneficial.

Hope your health continues to improve. Clare x

[whisperit in reply to Fennella02]

Thanks, Clare, My resp. consultant is keeping me as an open case, but not scheduling any further reviews unless requested by the GP or rheumy - which I am fine with. He lives in the (rather grand) house opposite me, so he probably doesn't want any trouble...

Hope things improve for you too Mx

[Fennella02 in reply to whisperit]

Are you still having PFT's or will you be guided by your symptoms? X

[whisperit in reply to Fennella02]

Being realistic, what will happen is that I will put peak flow measurements on my

daily schedule. If they are OK for a ten days or so, I will lose interest and stop doing them. I will suddenly become very keen to do them again when I get my next chest infection... X

[Georgie-girl]

Great news, I'm so chuffed for you after all you've been through lately. What dose of pred have you been on for results like this?

As coco said, try demand the most experienced physio on the team to make sure you get the best possible help and i'm sure you'll be jogging round the block soon. Well done you !! I'm with you and the and Some people are just born show offs.....coco X

[whisperit in reply to Georgie-girl]

Thank you Georgie-girl. Lol at show-off coco.

I started on 20mg pred last April, and after several months, came down fast to 6mg, but had to go back up. I came down again to 7mg in mid-Jan and since then, I have been steadily reducing. On 5.5mg now. (my consultant said, "I've never heard of anyone being on 5.5 before" - I explained that it was thanks to advice on here that I persuaded my GP to prescribe tablets in denominations that would allow tapering by 0.5mg at a time).

Over the same time period I've also had 5 courses of antibiotics, plus a cheeky one-off IV dose which a house officer gave me before the consultant came along and said, "Er..., I don't think so" x

[Georgie-girl in reply to whisperit]

Well it all seems to have done the job and worked great. Hope you continue to improve and go from strength to strength. X

[Wendy39 in reply to Georgie-girl]

Love this! 😂😆😉 x

[happytulip]

Great news about your lungs. Being short of breath sucks. I'm so pleased for you. Just be aware that a steroid taper can cause shortness of breath but it's only temporary, don't get worried that your lung problems are returning. Take that taper slow....you've been through tough times.

[whisperit in reply to happytulip]

Thank you, happytulip, that's a good point. I think I will use the peak flow meter again to help keep a close eye on lungs etc x

[misty14]

Hi whisper it

So pleased to read your good news. Richly deserved for all your struggles and extra worries this year!. Do hope the physio helps and you've turned a corner health wise!. Great you can have short courses of steroids to help. Onward and upward as they say and thanks for posting good news. Fingers tightly crossed for you. x

[whisperit in reply to misty14]

Thank you misty14. It was good to hear you good news from vascular medicine the other day too. Lets hope everyone here gets a fair crack at enjoying the coming summer Mx

[misty14 in reply to whisperit]

Thanks Whisperit, couldn't agree more. Here's hopeful for us all. Good luck for your mum's treatment. X

[Rubylu]

That's reassuring news.

[whisperit in reply to Rubylu]

Thanks RubyTuesday. Fingers crossed that you get some relief for your knee soon - and some sleep! Mx

[Wendy39]

So pleased to read your positive post M. You must feel very relieved. Please let us know how the physiotherapy and steroid tapering go. Good luck! x

[whisperit in reply to Wendy39]

Ta muchly. You can rely on me to keep posting - who else will sit there and listen while I ramble on.....?! Mx

[Wendy39 in reply to whisperit]

We're all guilty of rambling at times.