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
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whisperit
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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
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
😆 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 😉)
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.
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...
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
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
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
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.
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
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
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