Hi everyone, Have not posted for quite a time. Primarily a very awkward house move, followed by a water infection with subsequent kidney infection. On advice from my Rheumatoid nurse, the hospital & my GP I came off both methotrexate & imraldi biologic immediately. Just as I was feeling better, I suddenly developed what I thought was flu. Hubby fetched our GP out as he was getting worried & we were shocked to learn it was pneumonia. I wouldn’t
Wish this on my worst enemy, it was terrible & I was “ off the planet”
For over 5 weeks. I am now back on my meds after a chest assessment. But I find I am now so paranoid about catching anything & ending up I’ll like that again that the worry is giving me sleepless nights.
Bone weary & a bit down in the dumps is an understatement. Has anyone else had this & if so how have you dealt with the after effects & the worry? Any advice very welcome xx
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Juliachoo
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Oh bless you it’s awful when you have been so ill. I do hope you are on the mend. I had a similar experience as you but not as bad I came down with the flu and this led to a chest infection earlier this year. I felt awful and had to stop meds and was quite paranoid about picking up further bugs🙈 8 months down the line and so far so good. I work in a college and the children often come in not feeling well, I probably wash my hands too often but it seems to be keeping them bugs at bay 😄. Hope you keep well 😘
I am currently grappling with pneumonia ( plus sinus and dental abcess ) too and so you have my full sympathy and I can understand the ups and downs .i have pleurisy too and it's recurrent and that's very wearing .
My gp said that rest is the cure as well as meds obviously and that we need to be kind to ourselves . It's a slow process and you have had two other infections as well so it's a lot for your body to cope with .
The anxiety can be part of the infection so it won't always be with you. I learned that and it does go . Look at it in the way that it's your mind protecting your body as regards infection . As long as you wash your hands and where possible avoid contact with those who have colds etc but other than the sensible precautions there's little else to do .
I expect that now your GP knows you've had pneumonia they will be very much aware and if you have any concerns will check you out asap .
I had to get an emergency spot this morning and I apologised profusely and she said don't be daft you are ill and you have an autoimmune disease you will not be up and running and you are vulnerable so we know that and need to check you out .
Keep posting on here and if you are in any doubt about things going wrong call your GP and if the anxiety carries on let them know , they can help and will understand .
My Eldest Son was hospitalised with it a few years ago and he said to me..
Mum I've never felt so I'll and weak in my life. So if anyone has a cold or runny nose, we ask them to stay away until they feel better. My immune system is very low and I catch things very quickly..
Stay away from anyone with any kind of infection. And don't go getting soaking wet, or be in the damp. Although we all need fresh Air, don't go getting chilled to a point where you start shaking.
Please get your Immunoglobulin levels checked. Your immune system may be severely compromised.
From 2012-17 I was plagued by repeated infections including pneumonia, UTIs, Shingles 5 times and Campylobacter! It was only when I started doing research that I suspected a problem with my immune system caused by biologic therapy. When I told my consultant of my suspicions he confirmed I had Rituximab induced Hypogammaglobulinaemia. My IGg levels had in fact been low since 2012 and this had been missed.
I have been on Rituximab since 2008 and Methotrexate for 35 years. Both of these drugs can cause damage to the immune system. So now I have immunoglobulin therapy. Initially it was via 3 weekly IV infusions but now my husband and I give the drugs via subcutaneous infusions at home weekly. Since pneumonia Xmas 2017 I have been well so the treatment works.
Hope you feel better soon and don’t have a similar issue. The moral of the story is to monitor your own disease and keep an eye on blood results.
That’s good information, Pam. I’m starting Rituximab on Tuesday. They checked my immunoglobulins last week; now I know why! Comparisons in future tests will be telling. I hope you have a good long time of feeling healthier.
Poor you. I have some idea how you must feel. As a result of numerous auto immune conditions and their associated medications my immune system really isn't worth the name. I am constantly getting fascinating new infections. Unfortunately I can't give you any advice that will help. My attitude is to try my best to enjoy the good days and to not worry about the things I can't change .
Crikey I’m not surprised you’re a little nervous about infections after that lot. My immune system is severely compromised very much like Pam-51. I’m currently battling my second virus which means I’ve been off my meds for two months now and boy do I know it. Went to GP’s yesterday and I’ve begged for some prednisone which he said was perhaps a good idea in my case. It’s very easy to lock yourself away when you’ve been sick but although this is the second really nasty virus I’ve had one after the other I’ve not been ill for almost a year and my immune system is in my boots. Hand washing and blowing your nose when you’ve been out is a very good precaution but try not to worry. I know it seems like one thing after another but you will feel well again soon 🤞and hopefully so will I. The only thing you can do is try to keep others away when they’re ill and I’m sure you’ll be ok soon and ready to battle the rubbish that RA sends your way. Good luck and try and stay positive.
I’m a paranoid germ freak, hand washer & handgel user, I take every precaution but I think the house move stressed me out & left me vulnerable. I honestly feel like going out in a mask lol xx
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Imraldi injections and increased pain
