I've spoken to my consultant in june and was told I don't fit the cireita for new drugs actioned by nice. I don't speak to my consultant until October
The only treatment I'm on is ambulatory oxygen.
My worry is whats happening for medication to help slow down the disease I have NSIP I found out from my gp
I'm in pain from coughing all the time, and the fatigue is something that is affecting my daily activities
I was just wondering is it a common thing not receiving any messages for the disease (I hope I'm making sence i was told I had pulmonary fibrosis now I've found out as said above) steroids didn't agree with me so I had to come off them.
I haven't been offered any help and I worry my fibrosis which is widespread may worsen my condition
I have an appointment today 14th July for the walking test as my breathlessness is getting worse im just wondering is this a common thing to happen by not having any meds as I do have alot of pain as its all new to me??? Thank you for reading and excuse my spelling mistakes and not making sense. Keep well and take care 🙂 Mickie
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Mickie67
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Hi Mickie67I have severe Emphysema / Bronchiectasis and I also have a walking coming up.
So I would say yes It is normal to have regular checks done as although I have been deemed as severe I do not need ambulatory oxygen BUT, one day I might.
It is worrying to get a lot of things thrown at you but don`t let it get you down, the folks here are knowledgeable and good friends.
Have a great day Mickie67 MORE GOOD NEWS..... The sun is out. YEAAAA.
Hi Mickie, I’m no expert but really do think you should be on some medication. It seems wrong to me that you have just been left to get on with things. This is wrong. Please get in touch with your GP/consultant and tell them how you feel. We have to really push for things to happen often these days it seems.
Good luck with your walking test. Can you speak with anyone there? Xxx
Hi Mickie67. I am sorry that you have just been left to get on with it. That doesn’t seem right. I am currently tapering off steroids but have been started on Mycophenolate as the Consultant said it does a similar job to the steroids but with fewer long term side effects. You do have to get regular blood tests. I now always ask for a copy of the GP letter as it’s hard to take in all the information you are given in a 10 minute consultation. Maybe a phone call, e-Mail or letter to your Consultant to discuss a plan going forward would be a good idea.
Hi Mickie67, this doesn't sound right to me either that you should have no medication to relieve your symptoms. If you're in UK you could give the helpline a call 9 to 5 Mon to Fri, 03000 030555. I've heard that they're brilliant. I'm afraid I don't know what NSIP is however they will im sure.
Please tell them at the walking test as you have just explained. Hopefully they should put you in touch with the pulmonary doctor attached to the team.
Hi Mickie,Not surprised to hear this . Unfortunately with IPF there is very little treatment available with Ofev being the only drug available, which Is the one I think you were referring to . Steroids are only helpful when you have an infection or exacerbation with this illness. Pre -Covid , lung functions were offered once a year and you would see the consultant either 3months, 6months or 9months apart for a chat , as there is nothing they can offer you . The Respirotory nurses sort Oxygen therapy when the time is right . But that is the reality of this illness , I also have been left to get on with things , but learnt a lot from this forum. I have learnt that I have to take responsibility for my health. Good luck, keep going 👍
Hi, I am sorry to hear you are in the same boat as most IPF NSIP PULMONARY FIBROSIS sufferers unless you fit the nice guidelines to receive treatment to help slow progress down. The only treatment I take, which is what I asked for over last four years is carbocistine to thin the mucous and azythirosene antibiotic tablets which I take Monday, Wednesday and Friday. I have been taking them about two and a half years and found them really helpful as they cut down the amount of infections I was getting. I was already taking esomerprasol for help with acid reflux. Unfortunately for me, I developed sclerosis in one eye so have to take prednisinal to control it. This illness brought on a lot of other ailments. I.e vasculitis but I have never received a definite diagnosis which appears to be the case with this illness. I don’t want you to think any of this will happen to you as we are all different but I have been managing fairly ok and have only just been given home oxygen after a walking test but i do try to only use if I think I need it. Take care.
Hi mi67 l have fibrotic nsip like you. i have been in hospital for 2weeks because of low oxygen level and was given iv steroids for 3days they have also upped mycophenolate and will up it again at the end of the month and am on oxygen 24/7 i hope to see the consultant in six to eight weeksThere is help out there be proactive!
Now to another part of my stay in hospital for the first few days i was in an admittance ward was told my stay would be short hence no move to a respiratory ward. At one point a Dr came in and preceded to explain about not resusatating me because of my lung condition! To say i was shocked is an understatement!luckily my daughter came in after a frantic phone call from me but then she discovered a do not resuscitate form had been added to my file got that removed and complain to Dr. Please everyone ask ask and ask again this is your health best wishes keep healthy😊😊
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