confused on discontinuation

[marilynmcl]

Am confused now...was put onto nintedinab recently...so not sure why you have been told it is discontinued...am in Scotland so is it only available to us here?

[momo17]

Hi marilynmcl. I’m also in Scotland n interested in the possibility of starting Nintedanib for my ILD. Do you mind me asking is that what you get it for and what nhs region you are under? I think it’s quite expensive and thought it might just be for extreme cases. My dlco was sitting at 63% but they suspect a further decline so got lung function tests again this Monday. I’m under Grampian. Thanks in advance for any info you can give.

[marilynmcl in reply to momo17]

Hi, I am in Strathclyde area...South Lanarkshire. I was diagnosed, 3 yrs ago now, with Systemic Sclerosis whilst in hospital with pneumonia. It has damaged my lungs quite a lot and they continue to decline. The consultants-respiratory and rheumatology, have said that the Mycophenalate meds had stopped working to halt further damage to my lungs so was told that the Nintedinab may slow down my decline...it is not a cure as there is none... I am pretty ill with it all. Mr. Tan, the resp. consult. had to get permission to prescribe the Nintedinab as it was very expensive so I had about a 6 week wait until I received it. I can only get it from the hospital, not the pharmacist locally, so they have arranged it to be delivered monthly to my home. I hope this helps you and wish you all the best going forward.

[momo17 in reply to marilynmcl]

Thanks very much for that. It’s such an awful disease. Just read your posts n altho I’ve had the disease slightly longer, sounds as tho it has taken very similar track. I initially was diagnosed with mixed connective which then went on to systemic sclerosis n have experienced all the same problems. I have been told mycophenolate done all it probably can for me too. I really hope you find some success with the Nintenidab. Best wishes x

[marilynmcl in reply to momo17]

hi, yes, I think you are very similar to myself with this illness...trouble with me is I also have severe osteoarthritis in both my knees, no chance for op. though, too much of a risk with the lung disease, was told 90% chance I won't survive the op. or if I did, same % for recovery. Am being referred to connective tissue consultant...Dr. Murphy...at Wishaw University Hospital. So, that's about it for me...I do hope you get this Nintedinab soon and you are okay with it. Best wishes x

[momo17 in reply to marilynmcl]

Gosh that’s awful. Strangely I have osteoarthritis too, in my hip but not nearly at operation stage. I hope you get some help from dr Murphy then. I will have to look him up. I’m half thinking of going to London to see dr Denton as he is so highly recommended. Quite a trek tho! Keep me posted of your progress if you can. Thank you n best wishes with your new meds x

[marilynmcl in reply to momo17]

Hi ...Dr. Murphy is a lady doc! Sorry you are going to have to travel so far to get some answers on your Scleroderma. I have always had very good consultants at Wishaw hospital. Best of luck with it all! xx

[Agedbiker]

Hi marilynmcl. I am in central England and I am due to start on nintedanib in 6 weeks.i had to get signed on for a trial via my rheumatologist at the QE hospital. Just finishing 6 months of cyclophosphamide then straight into mycophenolate and nintedanib together. I am similar to you, got diagnosed with ssc whilst in hospital with pneumonia which has damaged my lungs. Do you mind me asking how the nintedanib is administered. Is it pill/self injection or infusion?

I hope if works for you, my rheumatologist rates it highly and is hopeful that it will slow the decline in lung function🤞🏻

[marilynmcl in reply to Agedbiker]

Hi, have had same experience of illness as you...but the pneumonia was not the cause of my lung damage..that was down solely to the Sys. Sclerosis.. as was very ill before the pneumonia and doc. had not a clue what was wrong with me until by accident a consultant was asked by the ward doc. to have a look at me and that was when she saw me and immediately recognised what was wrong. I too got the 6 months of cyclo. then onto myco. but the myco. stopped working on stopping further damage to my lungs so this was why I was put onto the nintedanib. It comes in capsule form...thank goodness -I get jagged enough with the blood tests...you need to get these too as it can affect your blood pressure so they like to keep an eye on that. Good luck going forward to you x