NSIP

[Ireneok]

Does anyone have fibrosis NSIP?

[winfar]

Yes, i have been diagnosed with NSIP after many years of being told i had IPF then i didn't so not sure exactly what my correct diagnosis is? I was also told i had emphysema and bronchitis' but after seeing a consultant last week who was an asthma specialist standing in for lung specialist who is sick, i was told he didn’t think i had emphysema and looked at me blankly when i mentioned bronchitis’s and really didn't think i had a breathing problem according to lung function tests and offered me physio to learn breathing* techniques.Told me i would have received same info from lung specialist and gave an appointment in a years time. He also told me i was ver obese as i had put on 1 stone 5lbs due to continuous steroids since july 2018. I now weigh 11 stone 5lbs. I really despair. I understand i have an ILD problem which has been hard to diagnose and is not really understood by most g.p’s or hospital doctors but that doesn't help me when i am so breathless with the least exertion. I hope you are having better luck than me as are quite a number of NSIP that are often on this site and maybe some of them would give their experiences.

[Ireneok in reply to winfar]

Hi thanks for your message. I thought I was bad off getting info but you appear to be worse off than me. I have been diagnosed for 9 years and see a consultant every six months and get my breathing tests twice a year and today I have my second c.t. Scan this year. I have the same problem as well have gained 3 stone and still rising with continuous use of steroids at least my doctors are a bit more sympathetic to me and say between medication and my age (59) being against me it can't be helped. Only advice I was given about our walking was to avoid hills difficult in Scotland not the flattest of countries only other thing I can say is always have a scarf in the cold weather to cover your mouth it does help. If I can help you anyway in the future let me know but you have to be monitored more closely than you are it is very difficult to manage physically and emotionally and without proper care it must be worse. You should also should be sent to get a biopsy to have it properl diagnosis. If I can help to in the future just let me know cause I don't know anyone else with this so you feel very isolated

[winfar in reply to Ireneok]

Hi, thanks for your response. Unfortunately i have a quite a lot of other ailments so undergoing many tests for them. They are probably all related i.e. vasculitis and immunity, but as i am now 84 and was diagnosed approx 7/8 years ago i suppose i have had a good run it is just i haven't found it an easy one. Take care.

[Oshgosh in reply to winfar]

Yes it’s really difficult to lose any weight whilst on continuous steroids.

I wouldn’t say I’m thin,but until the last 18 months,I’ve been “active fat:

I’m still wearing the same size clothes.

My asthma nurse said that fluid retention makes it really hard to lose any weight.

Others mutter about healthy options don’t listen when I say I’ve had no appetite for months. Struggle to eat whilst onAzatropine.

Sorry for ranting.

Today at a group I go to,one of the girls had been told to lose 2 stone by March.

She has worsening COPD,is on ambilant oxygen,struggles to walk more than 100 yards,is this just a wY of avoiding giving any more treatment??

[winfar in reply to Oshgosh]

Thanks for your message. I often wonder if, in my case, it is an age thing but it is disappointing to be spoken to so uncaringly which makes you feel that you are wasting their time. Maybe one day i will be lucky enough to listened to.

[Oshgosh in reply to winfar]

Hi, I e got lupus and nsip, Azatropine did t suit me, just started on myclophenatee

I take y husband to my numerous appointments and make notes.

If he can’t go,I take someone else ( extra ears)

[Oshgosh]

I’ve got NSIP. They can’t decide what type it is.keep changing their minds.

They did tell me when I first went that I may never have an exact diagnosis

[winfar in reply to Oshgosh]

I know how you feel as they never seem to have a clear diagnosis. The problem is i always gets told that there could be another problem and the appointments just keep adding up. At least three separate appointments in the last 4/6 weeks and another’s one this coming monday, which i know i should be grateful for as i am suddenly receiving a lot of attention which i am really not used to.

[Oshgosh in reply to winfar]

I know what you mean. They keep discovering new things.

I think it’s the lupus causing all the problems.

When I tell the docs this,they just look at me.

Last week I had an appointment with rheumatologist and ILD consultant.also physio.

Monday was sleep apnoea clinic.

Tuesday was my own physio. Thank goodness.

Nothing till my myclophenate blood tests next week.

Perhaps will get a rest.

With the NSIP do you get pain in the base of your lungs and your chest ?

Hope your day goes well

[winfar in reply to Oshgosh]

I always had pain and a heavy feeling in my chest but the worst pain was when i was admitted to hospital with an infection and pleurisy. The ambulance were reluctant to take me because i didn't fit the profile of a heart attack. He told hospital a and e that he had only brought me because i had a history of lung disease. Have had a lot of problems and i am sure nobody really knows why but apart from these extra problems and the breathing (which is my worst and can’t seem to find an answer to) i really am coping much better since i started taking azythrosin 3 times a week along with carbocistine which hopefully are holding off the dreaded infections. Take care

[Oshgosh in reply to winfar]

Yes my shortness of breath is getting worse. To see ILD consultant and rheumatologist together next month.

The dreaded spirometry before I see them..

I don’t think they know the answers to a lot of things associated with NSIP.

They’ve sent me for scans rests etc to “rule” out other conditions

At least I know my heart is sound and my BO is ok.

The rest of me,well. What can I say!i also take Azithromycin and co trixamole on alternate days.

Started myclophenate this week.

I really need it to relieve my symptoms.

I think lupus is causing my problems,but they don’t like to commit themselves

When. I asked if lupus had caused NSIP,they said they didn’t know and if it had caused it,it was very rare!

As NSIP is rare, obviously lupus causing it will also be rare.

I just smiled.,carri on with list of questions.

Sometimes. I ask a question,they say they don’t know. I always thank them for their honesty.

Think we just have to struggle on with this obscure disease as best we can.keep in touch,I will post later about issues with ambulance and A N E

Look after yourself and keep wrapped up warm.

[winfar in reply to Oshgosh]

Good luck with your appointments and let me know how you get on.