Chest infection/fluid on lung - off my methotrexate and benepali

[ZiggyZebra]

I was wondering if anybody is in the same situation as me or has been. I have had quite a few chest infections since January of this year and now I have some fluid on my left lung. Since June I have been asked to come off my methotrexate and benepali for fear of having more infections.

I am currently in a situation of limbo waiting for some answers from rheumatology and the lung specialists. My arthtitis flare is awful, I have been allowed 2 short courses of low dose prednisolone which has helped a bit.

I should have had a consultant rheumatoid appointment on the 20th of this month but this has been cancelled until 25th October. I have a phone appointment with the rheumatoid nurse next week although I don't think there will be much they can do until I have some answers from the lung clinic.

I know that I do not have an infection at the moment and that the amount of fluid on my lung is not a huge amount - so that is maybe why I am not an urgent case.

Anyway, any advice would be greatly appreciated. Thank you x

[Oshgosh]

Even though you say you’re not urgent,you’re definitely in pain and struggling.I find the nurses are pleasant,but the ones I deal with can’t make any decisions.they can email the consultant,so perhaps you need to make a list of what you want passing on to consultants.

I get the impression that rheumatology as a whole is under pressure,partly because of what I’ve read on here,partly because when I’ve left messages,I have to leave a message twice to get a response.

[ZiggyZebra in reply to Oshgosh]

Thank you, yes I agree the whole NHS are very stretched at the moment which is why I am not having much luck. I will ask the nurse to email the consultant, thank you x

[Neonkittie17]

Hi ZZ, I’ve had catarrh/fluid on my lungs/chest infections/pneumonia as a result of my biologic medication making my immunoglobulins low/hypogammaglobulinemia which can result in susceptibility to bronchial infections/problems and other infections as well. Presume you’ve had a chest X-ray and this is the result you’re waiting for as this was the first thing my GP did and I saw a respiratory consultant privately as I didn’t want my bronchial issues to hold up my biologic infusion which was due the month after. He said my X-ray was indicative of pneumonia and was very cloudy bilaterally and needed antibiotics and then a CT a month later. (Nothing to find my on my CT despite all the wheezy/thick catarrh.)

That was four years ago and I still have bronchial issues and have had to have lots of antibiotics to calm it all down. I’m changing to another biologic very soon which is supposed to be more gentle on the lungs. Have you been given antibiotics? I hope it’s a one off incident and you soon feel better and get to hear from the chest clinic soon. You could let rheumatology know results as soon as you get them if they are sent to you first rather than to them but I presume they can access those themselves online/their system, as it might speed things up. You said you have a phone call soon with the nurse so hopefully that will help. I would think as soon as rheumatology get the go ahead from respiratory to restart some RA treatment they will as it’s a few months off anything now for you. 😑 Good luck. x

[ZiggyZebra in reply to Neonkittie17]

Thank you, this is extremely helpful. Yes I have had quite a few courses of antibiotics, several chest xrays and an ultra sound but then nothing back from the respiratory specialist, despite my gp chasing for it. I will use your infomation when I speak to the nurse next week.I am considering going private too, although struggled to find repiratory specialists on my first look. Thank you again x

[Neonkittie17 in reply to ZiggyZebra]

You’re welcome. Yes, I would ask your nurse when you speak on the phone if your immunoglobulin results are decent because persistent low ig’s can cause (chest) infections. Let us know how you get on. x

[ZiggyZebra in reply to Neonkittie17]

I will, thank you x

[Neonkittie17 in reply to ZiggyZebra]

Good luck 🙏🏻💗x

[Angels54]

Hi , Simon Benapali and had a lung infection was given antibiotics, coughing yellow up , now off antibiotics , felt unwell no GP app ra111 bloods done showed infection had to stop Benapali. how do you know you have infection if you don’t have regular bloods check, 4 wks on can hardly walk , I have never had chest problems until I went on drugs , I cycled for years , what can you do when you in so much pain ? 👍

[Neonkittie17 in reply to Angels54]

Usually the GP sends off your sputum to the hospital labs to test for infection. There if you could get a GP appointment. 😑

[ZiggyZebra in reply to Angels54]

My GP does send me for regular blood tests to check for infection too. It's horrible being in so much pain. I hope someone can help you. I rang up my gp in tears about a month ago, keep asking them what they can do for you. I will report back if I get any advice from the rheumatology nurse. Take care x

[Biofreak]

Hi. I developed chest infections whilst on Methotrexate and it was decided I couldn't tolerate it. My GP put me on antibiotics after the last infection and when the infection cleared up a 3 week course of higher dose Prednisone starting with 30 mg per day and eventually tapering down to nothing which helped deal with both the resulting flare and also the inflammation in my chest due to the infections. I was then put on sulphasalazine which I still take. I have had several biological treatments since some of which were successful for a while. I am currently on Abatacept which I have been given to understand is less harsh on the lungs. I would urge the rheumatology nurse to speak to the rheumatology consultant to speed up a decision on the best course of action for you so that your pain can be alleviated. Good luck.

[ZiggyZebra in reply to Biofreak]

Thank you so much, this information is really useful and I will use it in my phone call with the nurse next week. Having this knowledge will really help me- thank you again x