Just like a trussed up chicken!

Just before Christmas last year I developed a sinus infection. I saw my GP who gave me antibiotics and I started to feel better. Then I started to cough and cough and well cough.

The nurse came to give me my methetrexate injection and said, ' See your GP ASAP. If not your daughter won't be able to come for Christmas.' I thought this was below the belt, you see my daughter in the UK was pregnant with twins and the nurse was just being over cautious I suppose. Anyway I saw my GP and he said the infection had gone to my chest. He arranged for the nurse to come everyday and give me an antibiotic injection, prescribed a nebuliser (I also have asthma), plus a nasal spray.

Luckily the infection seemed to clear just before my daughter arrived but I still felt breathless. Whether this triggered the flare that started Christmas Day I don't know but the flares continued every two weeks and the breathlessness continued so I was pleased when I saw my rheumatologist early March.

He reckoned the flares were excessive and arranged for me to see a chest consultant about the breathlessness. He gave me a one off strong injection of a prednisone type to last three months until my next appointment.

The chest consultant did loads of tests and my readings were on the low side so he adjusted my asthma medication and did moot that perhaps the methetrexate was involved.

A couple of weeks later my husband and I went to England as our daughter had given birth prematurely to her twins - a boy and a girl. On the journey I felt the familiar uncomfortable feeling on the left side of my nose but hoped all would be well.

When we arrived in England I phoned the doctor's surgery that we use over there so the GP can authorise the practice nurse to give me the methetrexate injections. My rheumatologist always writes the request for them to give it in English which he asks me to check but is always perfect. I take my own medication with me and reassure them of this as the receptionist goes into panic mode that they would have to provide the injections.

I saw the GP who authorised the injection on the computer and then I mentioned the familiar sinus problem. She prescribed antibiotics and off I went to the pharmacy.

I took the antibiotics for a few days but instead of it getting better it got worse. After one particularly busy day I got back to our friends' house where we were staying and couldn't eat dinner, instead I went to bed and stayed there for the next four days. My husband rang the surgery and arranged for the district nurse to come and give me my MTX injection. She came in and looked at me then told my husband to ring the GP immediately. She did give me the injection though.

The GP listened as I told him I had slept for the last few days and not eaten or drank hardly anything. He rang an ambulance and before I knew I was in hospital. Tests proved I had pneumonia. My oxygen levels were dangerously low, my blood pressure high, my temperature high and my chest congested. I had a drip with antibiotics, oral antibiotics, pain killers, nebuliser, oxygen and physiotherapy. I had to have a special bed to keep me upright otherwise I couldn't breathe.

A week later I was alllowed home and I could hold my new grandchildren for the first time and I loved it. I was however terrified of getting another chest infection as my husband was coughing all over the place. He refused to see the GP until the day I was released from hospital. He was prescribed antibiotics too but it took a while for the coughing to stop.

Again my breathing was not good even though the pneumonia had gone. I had an appointment with my rheumatologist just after we returned and I told him what had happened he also read the discharge letter that was sent to me. He then thought I should see the chest consultant again; sooner rather than later.

I saw the chest consultant and he said I needed x-rays. These came back that I had a problem with my sinuses. So he proposed he fitted me with a monitor to wear overnight and monitor my sleeping, to see if I have sleep apnea he said. So I went back last Thursday and he fitted this equipment that was way above what I expected. A box which had wires fitted to it from elastic belts waround my waist and chest, then a clip on my finger for pulse/oxygen monitoring and lastly a tube, such as when you use oxygen that has the little things that go up your nose. I then went home with an appointment to return in the morning. Sleep wasn't easy being trussed up like a chicken!

I removed it in the morning and returned it to the hospital and await a phone call from the doctor. I also have an appointment with an ENT consultant in a week or two so I wait and see what will happen.

In England I was told to get help immediately WHEN it happens again. I don't want another dose of pneumonia thanks. The UK doctors again mentioned methetrexate and they tested to see if I had 'methetrexate lung' which it appeared I didn't. During my stay the doctors wanted to change my RA medication but I said that could only be done with my rheumatologist's approval so they left things as they were.

I now wait to see if being trussed up gives me any answers, especially as I have that familiar feeling in my nose and sinuses.

6 Replies

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  • I thought you were supposed to stop taking methotexate when you had an infection, I have skipped a couple of weeks, when I was on anti biotics, to give your immune system a chance?

  • Well my rheumatologist and GP didn't stop it, neither did the doctors in the UK hospital. I did ask and I was told it was OK. When I see rheumatologist in a coupld of weeks I will check with him again.

    Everything seems to be groping about in the dark.

  • Hi BC, I am still recovering from a bad lung and chest infection it has really knocked me off my feet! However I was told under no circumstances to take my Enbrel or Methotrexate injections.

    If you check the information leaflet that also comes with your Methotrexate injections this should also tell you this (mine does) I would just worry your body has no chance of recovery from infection if the mthx is contiually lowering your immune system.

    I would phone your rheumatologist just to double check.

    Take care

    Julie x

  • I did too Gina. maybe Burgandy Corals bloods were ok and the sinus infection wasnt linked to low WBC or anything. Hope you dont succumb again with the sinusy thing.

    Fiona

  • Hi All, I was also told by GP and RA Consultant that if I take antibiotics I should not take Enbrel or MTX until the course is finished. Likewise my GP told me not to take them if I had a heavy cold and chestiness. I have asthma anyway so have to up my asthma medicine to extra puffs if I have a cold. I also have sinus problems but had them before RA made itself felt. I use Otrivine Sinusitis spray which does keep the sinus' clear, particularly the right hand side of my face as i also get severe ear ache with it.

    There were some nasty bugs going around Xmas time - I went down with heavy colds and chest infections one after the other and began to wonder if I would ever be free of them. MTX and RA does lower your immune system. I have also had cancer so my immune system waved the white flag and went home a long time ago! I also have to have the odd steroid injection when the flare up is bad and not responding to anything - that then causes my GP to go into panic mode because of the risk to my bones. Have had 2 bone scans and both are normal. The second one even showed a slight increase in bione density. Do hope you will feel better soon Coral Best wishes LavendarLady

  • Ah you see, I suffered with a bad sinus infection a couple of years ago now and it lasted for a good 5 months! Nothing touched it until they blasted me with really strong antibiotics and a steroid nasal spray. I was very ill for so long and in all that time continued to take mtx. I asked my RA Consultant if I should stop (as GP told me too) but he said that the dose I was on was relatively low (in the grand scheme of mtx) so there would be no point in stopping it - it would be more detrimental to my joints than beneficial to my infection. Was on the verge of being referred to ENT when it cleared up, I have suffered since and get put straight onto strong antibiotics and use the spray and it hasn't lasted for longer than a month. It seems we all get told conflicting things...Hope everybody will be feeling better soon ;) xx

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