Anti-TNF

Aprilann

Any advice would be greatly appreciated.

I have recently had a flare-up of my RA because of reducing my medication (steroids and azathioprine) and also stress and anxiety doesn't help does it?

Do you think anti-TNF would upset my very bad lungs because I easily get out of breath?

I know azathioprine is an RA drug but I was put on it for my lungs.

While I'm on here I would like to say a bit thank you to stickywicket, dreamdaisy, folara, hileena, etc etc for all the helpful advice you give.

Thank you.

lindalegs

Hi Aprilann,

I've been on anti-TNF (Etanercept) for four months now and am responding really well.

Before you're accepted for the treatment you have counselling and screening, including an x-ray of your lungs. They won't put you on anti-TNF if it's likely to cause your lungs more damage.

Have they offered it you?

Luv,

skezier

Hi Aprilann,

Like Legs says they do screen you and they would take your lungs into account. Could there be one that helps both though? I know with the crohn's and the pa there are drugs they can use that are able to dampen down both so they might be able to help you in two ways maybe?

I really hope they will come up with something and maybe a chat with your gp or your rumo could help you? Hang in there Cris x

Aprilann

Thank you lindalegs and skezier for your quick replies.

I am a bit of a complex case - RA for years and years, RA lungs (with ongoing infections), sjogren's syndrome (dry eyes and mouth etc), osteoporosis (maybe starting on a daily injection for this), high blood pressure.

When I saw the rheumatologist about six weeks ago he could see my joints on my right hand and wrist were red and swollen and he told me to come back if it didn't improve. Well the hand has improved but I've gone back to the all day stiffness and more pain than usual. My ESR has gone down from 40 to 30 so it is going in the right direction. This flare-up is all because I wanted to reduce my medication.

He did mention anti-TNF and also sulpfazasine (not spelt correctly) but he could see I was a little worried about these.

Just don't want to upset my lungs.

Thank you.

skezier

Hi Aprilann,

I so get you not wanting to upset the lungs but flower your rumo will also be aware of them too and he will not put them at risk.

You can hear his ideas but you don't have to decide there ad then or do as he suggests either so just see what he thinks and maybe there is a balance you can find that suits the bones and doesn't upset the lungs.

I do so hope so.

Rest up and exercise in equal measures seems to help me in a flare.... but the rest ups can be longer than the exercise bit on a bad day.
hang in there flower and fingers crossed they will sort out something that suits you soon. Cris x

dreamdaisy

What may not upset one person could upset another (in lung terms, well, all other terms too I guess!) I have asthma (well, used to, it's gone thanks to the suppressed immune system) and I have not had any lung trouble with any of the anti-TNFs I've tried. The sulph has been fine too. I hope that you are considered for such a treatment if your rheumatologist decides it's the next course. You will be assessed and tested before a decision is taken (bloods, Xrays, lung function tests) and if they are all good then treatment can begin. Funding can take some time to come through so there may be a little wait. I wish you well. DD

tillytop

Hello Aprilann

I don't know which of the biologic drugs your rheumatologist is considering, but thought you might find it helpful to know that I was talking to a chap at the hospital a while ago who has rheumatoid lung disease and he was still able to have his infusions of Rituximab. From talking to him, his lungs were obviously not in a good way, but he was still having the drug. I know that Rituximab is not usually the first biologic to be given (and I don't think it is usually given for sero-negative RA) but thought that might give you some encouragement.

Love Tilly xxx

stickywicket

Hello again, Aprilann. You have a lot going on there and I can see it must be a constant battle trying to decide which bit of your body to appease.

I've never had lung problems, apart from mild asthma, but I did end up in resuss some time ago when a cold went horribly wrong so I do get how frightening it can be when breathing becomes something to fight for rather than a natural process that we're largely unaware of.

You've had some good replies there from people better able to help than I. (DMARDS still do it for me.) Going down the anti-tnf route is not a decision anyone takes lightly and must be even harder for you but I'm sure you'll be very well monitored if you opt for it and you might find that you feel so much better you can move about more which, I would guess, would help your lungs.

Take care and let's know what you decide.

Aprilann

Thank you everyone for your most helpful advice.

Have arranged an appointment for the 19th to see my GP (the day after my next monthly blood test) so that I can see if the ESR has gone down even further and I can discuss anti-TNF with her. It's just that my lungs have been pretty stable these last few months and of course I want them to stay that way.

It's a great comfort to be able to come on here with my worries - and I have a few more besides.

barbara12

Hi Aprilann
I cant offer any advice but I really do wish you well with your treatment, and please let us know how you get on.
And dont forget we are always here to offer support xx

skezier

Hi Aprilann,

Glad you have been able to get an appointment with your gp, talking to them might well help allay your fears a bit.

I also echo Barbara with the bit about the forum being here for you tom say and talk about your fears. hang in there Cris x