Hey everyone hope you’re all ok or as well as can be.
Thought I would share my day from hell. I called my GP as I have picked up a virus which was making a rapid migration to my chest. I had a bit of a temperature as you would expect from a virus when you’re severely immune suppressed as I am. They got me in as an extra on the docs list so far so good 😊
So went in to see the doc he took my bp checked my pulse temperature and listened to my chest which was resembling a crisp packet (which is why I was there). Then the crap hit the fan I was informed that he suspected sepsis and was going to call an ambulance I basically begged him not to do that coz I didn’t think my fever was anywhere near as high as should be if that was the case. But being a patient and not a doctor I had to consider that if he was right then he would be saving my life. So out came the blues and twos with two fab ambulance paramedics who checked me over told the doc that he should have nebulised me coz I was struggling to breathe (chest infection). Anyway off to A&E sat in the ambulance for about 30 minutes before I was taken in. Then lots of bloods taken cannula put in and sat for another hour and saw a doc.
All I could do was apologise for taking an emergency ambulance for a possible chest infection and an over reaction by the GP. Long story short had a chest X-ray was given some antibiotics and sent home thank god but it took 6 hours to get to that point.
I suppose I’m moaning and have no right really but I’m soooo tired I haven’t slept a wink for 3 days now because every time I try to go to sleep I wake myself up coughing a lung.
Any suggestions how to knock myself out would be appreciated other than a baseball bat lol. I’ve tried inhaling various herbal vapours and am very sticky covered in vick.
If anyone is wondering I stopped the baricitinib and steroids on Saturday when the virus first hit me, lucky me my joints are now kicking my ass too.
The moral of this story is do as you’re told if your immune suppressed go to the GP as soon as a virus or infection hits you my only excuse was I wasn’t well enough to go on Monday and they’re not open on Saturday or Sunday. I figure if I’d have gone to an out of hours doc or dialled 111 I would probably have still ended up in A&E I’m lucky that way.
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Leics
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I think you could have been lucky... be aware that one of the oddities about being on biologic drugs is that serious infections don’t necessarily show up as a high temperature. I have an alert card in my purse that says that very clearly! And says that emergency medical staff should not ignore my symptoms even if not accompanied by a high fever.
My chest is my nemesis and I highly recommend sleeping sitting as upright as possible. I also have a used humidifier which helps, so maybe you can see if you can borrow one? I occasionally borrow my sister’s little one which she uses for the baby.
Warm drink before bed to soothe things can be helpful.
Thanks crashdoll, I did find that having some fresh air coming into the bedroom has helped a little. The very strong antibiotics I’ve been given seem to be making things a little easier I’m not coughing as much but will try the dehumidifier. The best thing was the 2 nebulisers I was given shame I didn’t have something of the sort to bring home with me. Thanks for the advice.
Yeah you’re right I did show them the alert card and my CRP was pretty poor too so that told them infection before chest X-ray results were in. I’m a little better today big dose of antibiotics seem to be doing the trick not out of the woods yet but will be kicking ass again soon.
Alert cards?....I could have done with one of them a few years ago when the paramedics came to my home because I had some seriously debilitating pain in my hip! My GP had either told me to order an ambulance when I explained my problem over the phone, or he ordered one himself. Anyway, when the paramedics gave me the once over they decided that I did not warrant going to hospital as their obs were all normal. Luckily, just as they were about to leave my GP phoned to see what was happening. When my wife told him the score he wasn't very happy and asked to speak with the paramedics who argued the toss with him about the need for me to be admitted to hospital saying that their obs were all normal. My GP wouldn't have none of it and insisted they take me straight to hospital. Even during the journey the paramedics still doubted the need for me to go to hospital, which like you, made me feel guilty of wasting both their and the ambulance's time as they cold be seeing to a more urgent case.
End result was I had septic arthritis in my hip, which required surgery, IVAs, a couple of scans and a 10 day stay in hospital! Followed by a 4 week course of strong oral antibiotics to take home. Goes to show just how careful we need to be. The first thing I did when I saw my GP was to thank him.
Oh that makes me feel better. I know I was sick and GP was probably right in hindsight (not as bad as in your case). We live and learn I’m probably going to get told off by immuno on Saturday at my appointment which is par for the course unfortunately but I do the best I can because I’m housebound most of the time but couldn’t avoid getting this virus from my husband however much I avoided him lol. I think in my case I’ve had poor treatment by docs so do my best to avoid them and it’s not always good to be amongst sick people at hospital with my immune system. Hey ho I’m soldering on improving even if it’s slow and I’m finding it difficult to do anything but forced myself to get dressed today. Give me a few more days and lots more pills and I will kick ass again haha.
Baricitinib is going well just had the dose increased to 4mg. It seems to be a big improvement because things have been very bad for a very long time. Before this rubbish virus I was walking better only occasionally using the pain patches I have had more energy and swelling was going down too. Definitely needed low dose steroids to compliment the baricitinib but my knees were staring to resemble a normal person apart from being a bit twisted but that’s RA for you. Hope I’m not off meds for too long it’s taken me a year to get to this point and I never want to go back to where I was. I’ve noticed from your posts that you had to stop baricitinib too for sometime have you managed to start them again ? Are you feeling better too?
That's good to hear. How long have you been on baricitinib and is/was there any reason why you were on 2 rather than 4mg, or does your rheumy just like to tread carefully?
I restarted 2mg of baricitinib over a week ago and haven't felt this good for ages! I've stopped and restarted it twice during the past couple of months and each time my RA has responded very quickly...just a few days for the pain to start getting worse and about the same for it to improve when I restart baricitinib. I still need to take a high dose of tramadol and paracetamol, but have managed to cut back a little this past few days and plan on reducing my dose further over the coming weeks.
I’m pleased you managed to restart baricitinib and it’s having a positive effect after only a few days. My rheumy would only start me on 2mg because I have a severely compromised immune system, with the ok from immunologist and of course me I had to take low dose antibiotics with it to prop up my immune system they’ve tried to get me ivig but can’t get the funding. I learned the hard way after having two different antibiotics that they don’t mix with baricitinib and made me feel very unwell, so it’s been stop start with treatment over about the last 12 months. I don’t know how but up to now I’ve been infection free for nearly a year so last appointment with rheumy he agreed to up the dose to 4mg that was in mid August. I have to admit it took lots of persuading for him to agree that I didn’t have to take antibiotics every day because they don’t suit me at all and I have severe allergic reactions to a long list of them. Don’t know what’s going to happen now I’ve got this awful chest infection but I hope he will see it as one of those things. Fingers crossed 🤞 I like you have definitely noticed that I’m not taking baricitinib at the moment I’m very sore and pretty stiff but not surprised. I have to add I did consider coming off all treatment because I felt so poorly whilst taking prophylactic antibiotics and after 6 years with no treatment at all that was how bad it made me feel. I was feeling pretty good with 4mg baricitinib (no side effects) and 5-10mg of prednisone which i was going to start reducing soon.
I do hope you manage to get a good amount of time without issues so you can enjoy a bit of respite from your RA.
Phwoof, and there was me thinking that I'm having problems treating my RA! Having a compromised immune system opens us up to all sorts of issues, never mind being severely compromised like you are! What a terrible destructive condition it is!
It must be so disappointing having that chest infection, especially after nearly a year of being infection free. Up until a recent sinus infection, which was nothing compared to your chest infection, or previous infections I've had, but it still came as a blow after being infection free for well over two years so I have some idea how you feel.
Thanks for your good wishes and hope you soon improve and get some well earned respite too.
One last question - what does ivig stand for?... I'm guessing intravenous something or other.
Ivig is intravenous immunoglobulins. Basically replacing the immune system which doesn’t work or in my case has been knocked out never to recover. It doesn’t mean I can’t fight off infection because I have got rid of a cold myself before (I was told off for that one lol). But it means I’m at an increased risk of getting an infection that my immune system can’t fight off and could and has this time made me pretty unwell quite quickly. My body doesn’t recognise an infection I may have had before everything I get is supposedly new to me and what antibodies I have can’t cope with it.
I have to say A&E was rammed but the staff were very professional they did a full screen for sepsis which went off to the lab post haste. I can’t fault any of them just didn’t feel I needed to be there however rubbish I looked and was feeling. I think it’s the ambulance trip that did me I figure someone could have been dying whilst I was using the service. I was still conscious and able to speak for myself just had the feeling it was over the top. I do have to say I was pretty unwell and still am but know I will be fine in a few days 🤞
I’m sure everyone feels the same about ambulances. If you don’t feel about to die, go by car. Sometimes you do need one though. Glad you’re feeling better now. I’m curious as to why you suddenly stopped the steroids though. I’m weaning myself off at the moment and I certainly feel the consequences of that. Suddenly stopping is going to make you ache a bit. Duh. Understatement! . I have never been told to stop steroids if I have an infection. What’s it about?.
I’m sure you’re right about the steroids but as my immune system is so poor and I was only on 5mg of prednisone the ED didn’t say that I could take them again. I’m seeing immunologist on Saturday so will see what she says. You’re absolutely correct that I’m feeling difference of having no RA meds but I’ve been much worse in the past so I will survive with pain meds for a while fingers crossed. This disease just keeps on giving lol. As long as this infection doesn’t last too long hopefully I will not get to the stage where it’s unbearable again and joint damage won’t start up again.
Thanks sylvi. Hope you’re doing ok. Going to be a slow one this time I think my hubby is still suffering and he’s had the virus for 10 days (he didn’t mean to share it with me) we are so careful with these things but sometimes it’s unavoidable. As long as I don’t share with anyone else visitors are banned atm.
I hope today finds you feeling much better. That was a nasty day you had but you must have had severe chest congestion for the doc to send you to hospital. So that is a good thing. 😊
Yeah was struggling for breath with congestion and coughing. It reminded me of having whooping cough as a child. Every time I took a breath I coughed was exhausted by the time I got to the docs. I’m going the right way now and I have been lucky enough to be infection free for 12 months. I don’t normally have problems with my chest or breathing so I suppose I’ve been lucky in that way.
Good to hear you’re improving. We’re having a change of seasons here in NJ USA. Everyone has bad colds and congestion here. We’re 90 degrees one day and 40 the next. It’s no wonder. Please stay well. Have a blessed day.
Hi there have tried am extra pillow to help the coughing at night also see if gp can give you something to help you sleep, mine just Has, oh what a difference a good night's sleep makes!! All the best hang on in there!
Thanks I will think about that. You’re right about a good nights sleep I managed a few hours last night and it’s made a difference. I’m hoping I don’t have to darken the GP’s door again for a while.
Hi everyone thanks for your most useful comments and advice. I’ve actually managed to get dressed today. I still feel pants and my chest is still pretty congested but I’m not coughing so much and managed to sleep for a few hours last night which has definitely helped. I can kind of take a deep breath now which is definitely an improvement. I’m pretty sore RA wise but have been much worse before treatment with baricitinib so I know I can handle it. Once the infection clears and I’m off antibiotics I will commence treatment again. I have an appointment with immunology on Saturday which is fortunate no doubt they’ll come up with a plan which will perhaps include taking penicillin for much longer than the ED suggested we shall see. Will keep you posted.
Leics oh bless you what a battle hope you feel better soon and if DOc says 999 his call not yours so dont worry about that! Bath (if you can get into one) with vicks in it, hot milky drink and bed.
Well I’m certainly doing the bed thing lol. Don’t have a bath but sat in the shower for about half an hour earlier and the steam was great. Killed me off to get dried and dressed after but at least I’m clean lol. My hubby has just brought me a cake which is a real treat because I have an egg allergy and vegan cake in supermarkets is hard to come by but yum nice treat.
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Sorry - another covid question!
Another day; another joint lost 
Lovely trip away with my son 😁😁
