Pneumonia again.

[Oscardoggy]

I have interstitial lung disease and have just been diagnosed again with pneumonia. This is the second time in 8 months. I am so fed up as it took me nearly 6 months to get over the first episode.

All my dmards were stopped and I had a massive flare which was never fully under control even with 40 mgs Prednisolone. I have just started on Benapali ( only had 1 dose) and have again developed pneumonia and of course all medication has been put on hold whilst I am on antibiotics. I am so afraid of having a flare as bad as the last one. I don’t think I can go through all that again.

[Blackberrywine]

So sorry to hear this. Take good care of yourself.

[Oscardoggy in reply to Blackberrywine]

Thank you xx

[Ali_H]

Have you had the pneumonia vaccine or is it just not work for you?

I hope things pick up soon

All the best

ali

[Oscardoggy in reply to Ali_H]

I have had the vaccine which was possibly ineffective. Thank you for your concern. xx

[Knip]

Really sorry to hear that you are having such an awful time. You are going through the mill and then some. I just wish I had something positive to say, but I can only say that I am feeling for you, which isn't much help, is it! I am assuming that Rheumatology know what i going on...it's important that they are being kept in the loop. 🙏

[Oscardoggy in reply to Knip]

Thank you for your response. It does help to know that people understand. I spoke to the rheumy team who gave me some good advice. Thank you again xx

[oldtimer2]

It's important for you that your rheumatology team know what's happening and can advise taking into consideration what happened last time. It may be possible to continue some of your treatment for Rheumatoid Disease - ask them. It's always a balance between managing the different diseases.

[Oscardoggy in reply to oldtimer2]

Thank you for your response. It was very helpful. I spoke to the rheumy team who said I could continue with the Sulfasalazine but to stop the methotrexate and Benapali. I am also on 10mgs Prednisolone. At least I will be getting something and so far I’ve not had a flare (although I’m only 4 days in ) I can restart methotrexate as soon as antibiotics have finished so I am hopeful.Thank you again xx

[medway-lady]

I have lung issues and did Pulmonary Rehab course. It was great and taught huff coughing too. Not had any issues for past 4 years now. Its worth asking if your Area Health Authority do the course it was really helpful. And gives you fast access to antibiotics (in the cupboard unused now for years ! and an emergency phone number for PR nurses. I hiope your feeling better and I had a sputum test which found the antibiotic prescribed was not effective against the bug in my lungs so again worth asking about. Best of luck x

[Oscardoggy in reply to medway-lady]

Interesting. Never heard of this course. I have an appointment at the chest clinic soon so will definitely ask the question. Thank you. xxx

[medway-lady in reply to Oscardoggy]

I'm in Kent and its a referral from the hospital. I didn't have to go but it was really enjoyable and being taught the huff cough really has made the difference I think. My lung function improved a huge amount and it run for 6 weeks repeatable every year.

[Oscardoggy in reply to medway-lady]

I am in Manchester. I will do some research as to whether these courses are available in my area. It sounds like it would be really helpful. Thank you

[Sunflower1921]

Sorry to hear you havnt been very well. Hope you get better soon. I have flares of inflammation, I have prednisone oy on the low dose now 2.5 mg, plus paracetamol s. I m so allergic to lots of drugs, quite scary really. Hope u get better soon. Take care