lung fibrosis and finally getting a new biologic soonish

As5567

After having many x rays scans and a bronchoscopy I have finally been given the go ahead to start my new Biologic drug (Simponi)

I have spent the last week in hospital feeling like death (and still do) after having lots of x rays and lots of waiting my doctor suddenly phoned me in the afternoon saying I needed to be brought into hospital because they think I have blood clots in my lungs. Thankfully that wasn't the case after having a CT scan at stupid hours in the morning but what it did show is that I have unknown cause of fibrosis of both lungs, one doctor says its caused by my AS another says its not so for the meanwhile I just have to play the waiting game and see if things remain the same or get worse, I'm fairly confident myself that it is caused by my AS because that is the area I get the most pain and muscle spasms.

After having the CT scan I was put on IV antibiotics which for the first couple of days made me so sick and weak that I didn't eat or drink anything for 3 days. They then swapped the antibiotics to another type and the sickness went away. I had to have daily bloods because they suspected I had an infection in my lungs despite nothing being confirmed in the lab just because my blood levels were so high, probably due to my AS. I now have to wait 6-8 weeks for simponi which I'm looking forward to, the only down side is that a condition of putting me on this drug is that I need blood tests once per week until my chest x rays show that things are getting better, and also due to the high risk of chest infections I currently have, apparently a tnf drug would usually stop us from having early symptoms of infections and you'd only get symptoms when things get bad, so I guess the blood tests would show if an infection was developing.

I am due to see a lung specialist next week in clinic and will hopefully know the cause of the lung fibrosis then. After 10 or so days in hospital I'm so glad to be back at home, those hospital beds are so soft that they do no good for people with any joint problems.

Boomer13

Sorry to hear of your hospital stay and feeling so rough. Good that it's got the ball rolling toward a new med, though.

I have the mysterious lung fibrosis in my family, too. Almost every family member for two or three generations has it, except me. I got the full blown seroneg. arthritis while everyone else had the lung problem and/or were mildly arthritic.

Feel better soon.

Starburst

Oh AS, you poor thing. I'm so sorry to hear you've been stuck in hospital. I really hope that you get to the bottom of the cause of the lung problems ASAP. I also hope that the appt with the lung specialist next week gives you some answers and that you can get on the new biologic soon.

(((As))) be kind to yourself x

Numptydumpty

Blimey, you're going through the mill a bit at the moment!
I'm afraid blood tests are a necessary evil, once a week will be a bit of a bind.
I hope next weeks appointment goes well, and you get some useful answers.
Take care, and enjoy being back in your own bed.
Numpty

barbara12

Hello As
What a rotten time you are having, has though things weren't bad enough before , hospital are not good for sleeping and like you say the beds.. :roll: but its good you are now home and I do hope they get to the bottom of what is wrong with your lungs..it must be so worrying and you need to start the new meds..hopefully things will go to plan.. and I really do wish you well with them..hope you sleep well tonight...x

Cariad71

I'm also sorry to hear you've been so unwell and in hospital. It sounds as though it might have given them a push to take you seriously re your new biologic though?!

Really hope you get answers about the fibrosis soon, I thought AS could be linked to lung problems but I'm by no means an expert.

Take care of yourself

stickywicket

You've had a tough time but it does seem as if things might be about to improve and I do hope so. The weekly blood tests will be both a bind and a reassurance. I hope the lung specialist can give you good news.

dreamdaisy

I don't know how I missed this, I am sorry. :oops: You have had a very rough time but you've got through it and I am sure things will soon improve - they just have to, don't they? :? Surely it's about time they did! How are things with you now? DD

As5567

Well I saw the chest/lung doctor and he says he is fairly confident that there isn't any underlying condition that I have and the fibrosis is caused by my AS. I have to go back for ANOTHER scan in 6 weeks time to see if things are getting worse or not, this time the scan will take around 90 minutes I have been told, not sure how I will lay flat on my back for this amount of time, the CT scan which only took 5 minutes was bad enough!

I also saw a new physio and was completely shocked if I'm honest. Total waste of my time and very clueless woman considering she is an AS specialist. All she did was insult me and tell me how my studies in Computing are not suitable for someone with my condition and I should be doing something active, maybe I should become a Builder or something? She also told me how my pain should be gone during the day and only be there at night, I don't think I've ever had anyone tell me before when I should and shouldn't be in pain and to totally dismiss what I was telling her, I won't be seeing her again that's for sure!

dreamdaisy wrote:

I don't know how I missed this, I am sorry. :oops: You have had a very rough time but you've got through it and I am sure things will soon improve - they just have to, don't they? :? Surely it's about time they did! How are things with you now? DD

Things will improve soon when I get my new TNF drug. While I'm waiting for that I have sooo many hospital appointments to attend, hopefully that will help the time pass by quickly! I'm feeling much better than when I was in hospital but still nowhere near normal for myself yet.