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Anti TNFs and respiratory problems Options
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Maria_R
#1 Posted : Saturday, April 12, 2014 11:01:10 AM Quote
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My consultant recently said that I qualify for anti tnf treatment and sent me for various blood tests- hepatitis, TB screening. I have just been given an appointment to see the respiratory and specialist nurse 5 days after I see the rheumatology nurse. This has come completely out of the blue and of course I'm panicking as I have had no communication as to why I need to have this appointment. Typically it arrived today, so I can't ring them until Monday to find out what's going on. Has anyone had experience of this? Is it usual ot have appointments like this? Any comments welcome.

Thanks

Maria
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gogs
#2 Posted : Saturday, April 12, 2014 2:17:23 PM Quote
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Maria_R wrote:

My consultant recently said that I qualify for anti tnf treatment and sent me for various blood tests- hepatitis, TB screening. I have just been given an appointment to see the respiratory and specialist nurse 5 days after I see the rheumatology nurse. This has come completely out of the blue and of course I'm panicking as I have had no communication as to why I need to have this appointment. Typically it arrived today, so I can't ring them until Monday to find out what's going on. Has anyone had experience of this? Is it usual ot have appointments like this? Any comments welcome.

Thanks

Maria


Hi Maria,

I haven't had quite your experience, and it's frightening that you get the letter at weekend when you cannot
contact anyone about it.

I do have Rheumatoid lungs diagnosed within three months of my RA diagnoses.
I have also very recently been diagnosed with Latent TB (LTB) and am now having TB treatment. Any patient being considered for biologics would have
a blood test just to check for possible previous exposure to TB. Immunosuppressives could potentially re-activate the TB bacillus, this is especially so
with the biologics. I have no idea how old you are, and you would certainly know if in your past you might have been exposed to TB.

Hope when you get through to them on Monday your fears are unfounded.
Gogs
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Paul Barrett
#3 Posted : Saturday, April 12, 2014 5:10:35 PM Quote
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It may be a simple as a lung function test. I had to have one before I started MTX. You puff into a tube and a meter evaluates the strength of your puff.
Paul Barrett

Hexham - Northumberland - Loads of spectacular walks - all I need now are the joints to go with them! :)

Enthesitis (2012)
Ulcerative Colitis (1990)
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Rebecca D
#4 Posted : Saturday, April 12, 2014 5:43:25 PM Quote
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Hi Maria

I know there are a lot of guidelines now before you start on an anti-tnf drug i.e you have to screened for TB, hepatitis, infections. You will also need a chest x-ray, have you had that done? They may have just picked something up that needs a bit more investigation or the guidelines may have changed that you have to see someone in respiratory before you start treatment. I did read in America you have to have a cat scan on your lungs before starting on the anti-tnf drugs.

I should just give them a call on Monday to put your mind at rest but don't worry too much they are probably just being really thorough, which is a good thing.

Best of luck with your treatment, I was on enbrel for 8years which was a miracle drug for me. Sadly it stopped working last year.

best wishes
Rebecca
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Maria_R
#5 Posted : Sunday, April 13, 2014 10:45:08 AM Quote
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Hi Everyone. Thanks for your replies and kind reassuring words.

Being honest, the mention of TB does scare me but as you say Rebecca, it's reassuring that they are being thorough. It's just unfortunate that the letter arrived at the weekend- I am a bit of a worrier when I don't have the full information.

Also- I'm rather upset that the RA is getting worse- hence the biologics- so hearing of potential complications/ problems didn't go down too well. Thankfully my lovely husband took me out for lunch and a bit of retail therapy!!!

Gogs- I have no definite idea if I have been exposed to TB in the past, although I think there might be the possibility from travelling abroad back in the 70's/ 80's. I did have the usual BCG vaccination when I was 12, I had a chest x ray in Feb so was told I didn't need another when I had the blood tests in March.

Thanks again

Maria
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gogs
#6 Posted : Sunday, April 13, 2014 1:53:16 PM Quote
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Maria_R wrote:
Hi Everyone. Thanks for your replies and kind reassuring words.

Being honest, the mention of TB does scare me but as you say Rebecca, it's reassuring that they are being thorough. It's just unfortunate that the letter arrived at the weekend- I am a bit of a worrier when I don't have the full information.

Also- I'm rather upset that the RA is getting worse- hence the biologics- so hearing of potential complications/ problems didn't go down too well. Thankfully my lovely husband took me out for lunch and a bit of retail therapy!!!

Gogs- I have no definite idea if I have been exposed to TB in the past, although I think there might be the possibility from travelling abroad back in the 70's/ 80's. I did have the usual BCG vaccination when I was 12, I had a chest x ray in Feb so was told I didn't need another when I had the blood tests in March.

Thanks again

Maria


Sounds like they're just being very cautious, which is what they should be doing. I didn't have the BCG
I think Paul also mentions lung function tests which is basically blowing into a machine, they perhaps do this on all patients starting anti-TNF's


Gogs
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Maria_R
#7 Posted : Sunday, April 13, 2014 5:21:32 PM Quote
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I've just done what I always said I never would- looked it up on the internet! It has put my mind at rest somewhat. The blood test I had will show up either 1) if I already have TB bacteria in my system, or 2) how my immune system reacts to TB bacteria -which I assume is essential if I'm going to be on biologics. If the first, then they will have to check further if it's latent or active. Given that I don't have symptoms I'm hoping it's latent. Fingers crossed.
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