Decided to risk Biological Agents.

[mattcass]

After listening to me my Rheummy has agreed something has to be done as the RA meds are not working he has started the ball rolling from his end getting me a bed in hospital a.s.a.p. to start several tests all under supervision and after discussion with his superiors will sit round the table with the Respiratory Team who will object strongly to any Biological Agents, But has said they will have to discuss it at least as it's my decision and i know the risks as any Lung infection could and would probably be fatal. will keep you all posted.Matt

[jimmyw123]

hi matt, i have an ank spond, also copd, i had the same debate with my rheumy and chest doctor ,

i had been on anti tnf injections ,enbrel for a few years then it was changed to humira injections [biological agents ]

approx 8 months ago this was stopped by my chest/lung doctor.

this was for fear of infections, unfortunately my ank spond deteriorated,

so it was restarted about 6 months ago, to see how infections fared during this recent 6 months,

i have had bad infections in the last few weeks, but no worse than the previous few years, in taking these medications.

my next rheumy appoint is 27th jan.

jimmy

[mattcass in reply to jimmyw123]

Thanks Jimmy, I have to talk to others who have been in this position getting by the chest Doc's is not going to be easy but if I get enough info on this it might give me some say in the matter.matt

[jimmyw123 in reply to mattcass]

hi mat,

this anti-tnf [biological agent ] has definitely helped my ankylosing spondylitis,

but my copd is at a pretty bad stage,

it seems were often between the devil and the deep blue sea,

if you remind me [not that i'm forgetful ]

i will try and remember matt.

and will let you know what the rheumy says on the 27th

jimmy

[Offcut]

I hope it all goes well for you keep us all posted?

Be Well

[mattcass in reply to Offcut]

Will Do and Thank You. matt

[DozyDormouse]

As you may remember Matt I have been taking immunosuppressants all the way through. At present am on azathioprine which is good for lungs and RA. Next week off for a course of infused Rituximab, again good for both. I figure that if I am suppressing my over activity then it is normal! Seem to be keeping infection free at present.

There is no way I could endure the pain of RA. At least being breathless doesn't hurt.

Keep a brave face on it all and good luck with the hospital stay

love Dozy xxx

[mattcass in reply to DozyDormouse]

Hello DD nice to hear from you, Why did I not contact you earlier on this I had some of the earlier stuff we discussed last year but F/B took up so much off my time but sadly that's come to an end there are some nasty people out there. Fran can understand but is really worried on the infection side as they all highlight the outcome, matt

[DozyDormouse in reply to mattcass]

Fran only gets the pain secondhand and cannot imagine how bad it can be. I have cried with just a little finger ache. You will be no more likely to get chest infection than you are now. Think what it would do for your mood to be pain free. I am still on maintainance dose of pre as well. My lungs have remained pretty much the same over the two years and no hint of the RA.

See what your consultants have to say but go for it.

Love Dozy x

[mattcass in reply to DozyDormouse]

DD if I am not in hospital next week it will be interesting at my Lung consultation even more so if the RA Doc has not informed them of this. When I was in pain I wished my heart would just give up or the time I looked so hard at the tablet bottle but you keep going because you know it's going away at some point. matt

[sassy59]

Wishing you well Matt and thinking of you and your family during this difficult time. Sending positive thoughts your way. xxxxx

[mattcass in reply to sassy59]

Thank You.matt

[dall05]

Hi MC, It seems as though you have very little choice and your decision is whats right for you. If I was in that much pain then I'm sure I would do the same.

I'm still being treated by a rheummy consultant and Lung consultant. They tell me now I have a condition called Anti jo 1 pos which is an antibody which does more harm than good. The good news I guess is its not idiopathic pulmonary fibrosis now, its only pulmonary fibrosis. .

I was being treated with azathioprine and prednisolone like Dozy but due to an allergy I'm now on Mycophenolate and prednisolne which seems to be slowing down the deterioration.

Tony