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Rank: Advanced Member  Groups: Registered
Joined: 2/14/2011 Posts: 301 Location: South Hampshire
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Hi Everyone We've now had the diagnosis of my 22 year old with RA. It is bronchiectasis - a bit like cystic fibrosis on the lung only. If you put it into Google you can read about it!! It appears that RA is the most likely cause. So we now have MTX which she has to take to keep the RA at bay, and also hopefully stop the lung getting worse - but also double dose antibiotics to try to clear a major chest infection she as had for the last 6 weeks.... drugs to make the mucus thinner and not sticky, and physio (which we haven't learnt how to do yet). The aim is for her to keep the mucus levels down in her lungs, so that infections are less likely... but the reality is that she will need antibiotics most of the time!!! Along with the MTX. Fortunately MTX seems to help all her joints which is really great... and MTX didn't like me!!! The hardest bit is that she is in the middle of a Master's degree at King's college London - and is still at home - too unwell to get back at the moment!! And very frustrated...... In the middle of negotiating lots of extensions on assignments. So we wait for another appointment on Monday with the bronchiectasis consultant and another appointment with the rheumatology consultant down here instead of at Oxford to try to tie in her care better. And I'm trying to look after her, as well as looking after myself!!! But it's fair to say as a parent you'd rather have the illness yourself than watch your children suffer... needless to say my other daughter is now worried in case she gets the RA!! To lighten things up - I am now going to try and book a nice holiday somewhere warm!! Anne 
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Rank: Member
Groups: Registered
Joined: 12/3/2009
Posts: 11
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Hi Anne
I am sorry to hear about your daughter, it is difficult to have that diagnosis on top of the RA.
I have Bronciectasis with my RA, I have had it from birth. It is important to keep lung infections to a minimum as it does cause the RA to flare more acutely. I take antibiotics all the time and nebulize antibiotics every day. This combined with physio keeps infections to a minimum. I am also given subcutaneous immunoglobulin to help fight infection. For serious exacerbations I need intravenous antibiotics which I have been trained to do myself. On these occasions I have a Picc line inserted which can stay in for up to six months.
I think the only advice I could give your daughter is to take all the help she is given to keep infection at bay and to clear her lungs as much as possible.
When I was young Bronciectasis was not well diagnosed and I did not always get all the help I needed, things are so much better now, and hopefully a good Chest hospital will give her all the help she needs.
I agree about the warm holiday, I am currently enjoying the warmth of the Canary Isles!
davannh (Anne)
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Rank: Advanced Member  Groups: Registered
Joined: 4/20/2010 Posts: 1,749 Location: Somerset
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Hello Anne,
So sorry to hear of your Daughters added problems. You will be worried I am sure
but having said that it does sound like she is being looked after well.
As far as you are concerned - yes a warm break would do you the world of good I'm sure.
Try not to worry
Rose
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Rank: Advanced Member  Groups: Registered
Joined: 3/28/2011 Posts: 956 Location: North Preston
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Hi Anne
So sorry to hear of your daughter's further health problems. I am sure they will sort her out and she will be able to carry on with her Master's degree. I hope you are going to go somewhere very warm and relaxing for your holiday. Let us know when you decide.
Sheila x
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 3,157 Location: Huddersfield
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Hi Anne,
So sorry to hear of your daughter's diagnosis, I can just imagine how you feel you would rather it had happened to you than to her!
It suinds like she is getting good care thankfully, and I hope she improves enough to get back to uni soon.
You take care though not to overdo it.
Love Doreen xx
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 2,237 Location: nr Southampton
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I have ths on one side They found it by accident on a routine chest xray I have no chesty issues actually and rarely get chest infections But when I do, it's hard going Spending a lot of time in bed myself so your daughter has my empathy how to be a velvet bulldoser
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Rank: Advanced Member  Groups: Registered
Joined: 8/25/2010 Posts: 1,289 Location: Buckinghamshire
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hi Anne,
so sorry to hear of your Daughter's added problems,
hope that she can be well controlled and live as normal a life as can be and continue with her studies.
look after yourself in all of this,
take care,
Suzanne x
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Rank: Advanced Member  Groups: Registered
Joined: 12/4/2009 Posts: 1,524 Location: W. Yorkshire
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I was wondering, for those affected by bronchiectasis - how did you get a diagnosis of this please? YES I'VE CHANGED, PAIN DOES THAT TO PEOPLE.
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Rank: Advanced Member  Groups: Registered
Joined: 12/4/2009 Posts: 346
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HI Julie, my dad has this. He had a chest x ray first which showed some shadowing/thickening, and then had a ct scan whih confirmed it. Hope you and Alan are on the mend.
Bevxx
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Rank: Member
Groups: Registered
Joined: 12/3/2009
Posts: 11
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Hi
I had my Bronciectasis diagnosed when I was about 12. In those days they diagnosed it by something called a Broncogram, they put this horrible white fluid into my lungs and then x-rayed them. These days with CT scans it is much easier to diagnose.
davannh
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Rank: Advanced Member Groups: Registered
Joined: 12/4/2009 Posts: 1,524 Location: W. Yorkshire
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Thank you peeps-I have had a chest x ray and that was supposedly normal so it looks like a scan may be the way to go. YES I'VE CHANGED, PAIN DOES THAT TO PEOPLE.
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Rank: Advanced Member Groups: Registered
Joined: 2/14/2011 Posts: 301 Location: South Hampshire
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I asked a friend of mine, who is a consultant, about how it's diagnosed and he said it can be diagnosed on a very good clear xray - but it is usually on a CT scan. We saw my daughter's CT scan and you could see it really clearly.
We go to the hospital tomorrow again to see another 'expert' consultant. Hopefully we'll have a way forward for the treatment.
Anne
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Rank: Advanced Member Groups: Registered
Joined: 12/3/2009 Posts: 2,237 Location: nr Southampton
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I had a ct The xray did show shadow/ thickening but when the ct scan result came It was the start of thickening The 'treatment' is better ra control.... If only! how to be a velvet bulldoser
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Rank: Advanced Member Groups: Registered
Joined: 12/3/2009 Posts: 2,237 Location: nr Southampton
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I had a ct The xray did show shadow/ thickening but when the ct scan result came It was the start of thickening The 'treatment' is better ra control.... If only! how to be a velvet bulldoser
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Rank: Advanced Member  Groups: Registered
Joined: 12/7/2009 Posts: 262
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Hi Anne,
Sorry to hear of your daughter's diagnosis. Hope her appointment went well and there is effective treatment available that will enable her to get back to her studies.
Take care. Thinking of you both.
Diane x
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Rank: Advanced Member Groups: Registered
Joined: 2/14/2011 Posts: 301 Location: South Hampshire
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Hi everyone Thanks for all your support. She is at last making some progress and feeling a little better. The massive dose of antibiotics seems to be working!! The hospital has done loads of extra tests, including DNA, to find out any genetic factors and to track down what the bug might be that seems to be resistant to most things down in the bottom of her lungs!! Apparently bronchietasis is very rare in someone of her age so they do a lot of investigations to try to find out as much as they can about it. It is lifelong, so she will have to learn to manage it. Physio and antibiotics being the key! He's pretty sure the RA is the cause. She's hoping to get back to London for just 3 days next week, to see how she gets on. The consultant said if she stays in London next year, he'll refer her to the Brompton Hospital as it specialises in lungs! We've just got through her RA appointment for Portsmouth, for March - so that's good. Sounds like its going to be a balancing act between MTX and antibiotics! She's one case where you MUST keep up with the RA treatment even when really ill and on antibiotics! Just as well her body was ok with MTX (unlike mine)! Thanks again everyone. Now a 4 week wait for all the results! Anne
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Rank: Advanced Member Groups: Registered
Joined: 12/3/2009 Posts: 2,237 Location: nr Southampton
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Sounds like positive progress is being made Much love and kindest support Jenni x how to be a velvet bulldoser
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Rank: Advanced Member  Groups: Registered
Joined: 3/8/2010 Posts: 914
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Hi Anne, Sorry to hear of your daughters lung problem as if RA is not enough. I do sincerely hope she continues to respond well to the treatment. Thinking about you at this worrying time. Lorna x
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Rank: Advanced Member Groups: Registered
Joined: 12/7/2009 Posts: 262
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Hi Anne,
Sounds as if your daughter is getting well looked after. I'm so pleased she is starting to feel a bit better. Hope the improvement continues.
Take care
Diane x
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