Pneumonia in January and still suffering

[HelenHV]

Hi, if anyone could help or advise I would appreciate it. I have Type 2 Diabetes and Rheumatoid and Osteo Arthritis and I had Pneumonia in January.. As part of my treatment all my RA drugs stopped and I have been on and off steroids and antibiotics ever since. I have had scans, sputum tests and xrays and apparently this bacteria has colonised in my lungs. I am currently on 9000 mg of Amoxicillin and am on the downward stretch of my most recent steroid currently at 6 mg per day. As usual I have had a few days respite and then coughing, shallow breathing due to the awful pain in my chest, but otherwise not too unwell. Except it feels as if I have someone sat on my chest it's so difficult to breathe. I am, after nearly 12 months, at the end of my tether. Pain is so bad now I don't know whether to phone NHS direct or just try to suppress it with pain killers????

[Caspiana]

Hello Helen. I am sorry things have been so hard for you. I think you should call for some help. Being in so much pain all the time is certainly detrimental to you being comfortable and therefore getting the proper rest you need. It sounds as though you have had more than your share of pain. I hope you get relief very soon. Please let us know how it goes.

Much love,

Cas xx 🌹

[HelenHV in reply to Caspiana]

Thanks for your kind reply. I really appreciate it xx

[Hidden]

Hello Helen, I'm so sorry that you have been struggling for so long. I have read your post carefully and have some observations which I hope may help you decide what to do.

Is your treatment being guided by the hospital consultant or just by your GP?

Has the hospital consultant seen your xrays and scans or only the GP?

Do you know which bug is colonising your lungs? Amoxycillin is only effective against haemophylus and so no matter how high the dose, it will do nothing if you are colonised with something else like pseudomonas. There are other bacteria which colonise the lungs. Many of us have them and we are treated with a variety of antibiotics, in oral, inhaled or IV form to keep the bug down and us well.

I don't know how much of your chest pain is due to your RA but as you say that your breathing is shallow and if you have difficulty breathing or lots of sputum you need seeing by experts asap. Also, do bear in mind that often with pneumonia, it is so deep seated that people who normally cough up sputum don't do so and the chest is suspiciously quiet.

If you feel that you are ill enough to call 111 I suggest that you do so.

If you have a consultant and can wait until everybody is back to work, call their secretary, explain how very ill you feel and get them to fit you in for an early appointment or adjust your treatment over the phone.

If you do not have a consultant visit your GP and get them to refer you. Don't take no for an answer because the treatment that you are being given at the moment isn't working.

I do hope that helps a bit and that you can get some help to make you feel better.

[HelenHV]

Hi, thanks for your kind response.

This recent episode has started to abate now thankfully and I am on my feet again

The severity of my symptoms varies but I have been seen by a chest consultant as well as my RA consultant, both of whom have looked at the Xrays and scans.

The sputum shows haemophylus and I had been on an enormous dose of ineffective antibiotics which my GP changed at my last visit 23rd Dec.

When I have the cough I get heavy green sputum, sometimes bloody. When I wake my mouth is cemented with bloody mucus, and usually my bedding also.

The pain in my chest heralds the start of another episode, but usually settles after a few days of antibiotics, I don't think it's linked to the RA.

Unfortunately I was well when seen by the chest clinic so he didn't get a clear idea of what I am normally struggling with. I seem to get a few days of feeling well before it all starts up again.

My GP has been amazing but can only do so much. She asked for an urgent review at chest clinic end of Nov and my appointment is end of Feb. She's the one who sees me when I am at my worst. My RA consultant is involved in my care but cannot do anything until this is resolved.

I feel like I am going round in circles and am less able to cope with every new episode.

I just want this to resolve so I can go back on my RA meds (Humera, Methotrexate, etc) and lay off the steroids which are effecting my diabetes. I have to keep having doses of steroid or I become bed-bound with the RA