Evening everyone, I'm wondering if any fellow RA sufferers out there who have also had sepsis might be able offer some support please? I've recently had sepsis and I'm really struggling so it would be good if anyone out there might be able to help please?
So I've had RA now for 6-7 yrs, on MtX, abatacept, preds to name a few. My RA has been stable now for a while and I've been reducing preds slowly.
However at the end of April I thought I had a sickness bug, concerned I'd not been able to take preds for a few days I rang my GP, who asked me to go in and see her. When I went in she promptly called me an ambulance and I was admitted for 5 days with sepsis, on IVAntibiotics for 4 days and discharged with oral ABs at the beginning of May.
I've been home recovering since, I tried to go back to work 2 weeks ago which didn't end well as I was totally exhausted. My CRP with my RA is usually around 20-25. When I went into hospital it was 374 and on discharge back in the 20s. 2 weeks after stopping the ABs it was still in 20s. I went to see my rheumy consultant on 24th May. My RA was starting to flare (they gave me a large dose of hydrocortisone in hospital so I think that had it controlled to that point) and I was extremely fatigued. He gave me a depo which settled my joints and I thought I was improving. However, since being back at work I am beyond tired again and my crp has gone back up to 80. It's been checked the last 2 weeks and is being rechecked again this Friday. I don't think it's the RA causing the crp rise as other than the fatigue, my joints still feel fairly ok.
When I spoke with my GP I asked him how long this was going to take to recover and he really wasn't sure and he didn't seem to know why my crp is going up again. He's obviously told me to go straight in if there's any sign of any infection, fever etc. He's also signed me off work again. Other than that he didn't offer much information.
I'm getting soooo frustrated and thinking I'm never going to get over this. Patience was never my strong point! Just before I went into hospital I accepted a new job which is more demanding and more hours than I currently work. As my RA has been controlled I thought I could manage this. However I'm now beginning to doubt my ability to take this new job on. It's an internal transfer so I've probably got til the end of next week at the latest to change my mind and stay put. I don't think by then I'll know enough to know how things may be in a few weeks/months. I really want the new job and don't particularly want to stay in my current job.
Sorry, that was very long, but what I wanted to know is from anyone out there who has had a similar experience to this and how long your recovery took, is this normal and did you recover fully to how you were before the sepsis? Did your crp keep going up or anyone any ideas on this please?
Thanks so much everyone
Claire xx
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Thank you and yes I've been messaging Allanah who has been really helpful as always.
Well I have to say it was a bit of a shock and yes I felt dreadful. I don't think I really realised how Ill I'd been until I was home, then it sinks in how lucky you are and what a good call my GP made.
Sorry to hear about your sepsis, not much fun at all is it!!
To try and cut a long and rather complicated story short.........
I've had sepsis on two occasions. The first time was by far the worse, and was some 3+ years ago when apparently a bug from a recent UTI managed to access my bloodstream and infected my right hip...ouch!! Surgery was required to clean out the hip and I was given 5 or 6 days IVAs followed by a course of oral ABs. I was discharged from hospital a few days later and continued with the oral ABs for a further 4 weeks. I was taking enbrel and mtx at the time I got sepsis and the orthopaedic consultant advised me not to take enbrel again as he believed it was the main player in allowing the UTI bug to enter my bloodstream. Having sepsis scared me so much that to lower the risk of getting it again I decided to stop taking mtx as well and went cold turkey during which time my RA went seriously out of control...and I mean seriously!! The following few months was absolute hell, I eventually succumbed to the debilitating pain and went back on mtx. During follow up visits to outpatients to check the infection wasn't making a return, a doctor told me it could take 6 months to recover from the sepsis. Looking back it probably did take around about that long. Although I can't be sure, I think the reason my RA went so crazy for several months may have been due in part to my mind and body being weakened by the sepsis .
The second bout of sepsis was about a year later and not so serious. It was linked to a stubborn antibiotic resistant UTI bug, with the infection really taking off following surgery to remove bladder stones. I was admitted to hospital, put on IVAs, then discharged a week later with 2 weeks oral ABs as I recall. I was nowhere near as ill this time and recovery was much quicker - more a matter of weeks than months.
edit....I was never told what my CRP was after leaving hospital, but it must have been falling during my follow up visits to outpatients as they seemed quite happy with how things were progressing and eventually discharged me. I never had any blood tests for the next few months but have little doubt that my CRP would have showed a significant increase later on when my RA started flaring. If your RA is under control and your CRP is still going up, then it could be due to an infection.
Might be a good idea to have a chat with your rheumy about having a temporary break from any immune suppressing meds that you're taking, especially if your RA is under control.
Hope this helps some. If there's anything else you think I can tell you then please let me know.
... when the infection entered your hip and you had surgery to clean it out, was it your own hip joint or a THR? Reason I ask, my first THR became infected and was impossible to wash out and save.
Thank you so much for your reply and not too long, just what I need, a little sharing of experience.
Sounds like you had a pretty horrible time there for a while and I'm glad you're finally feeling better.
They believe my sepsis may also have been down to UTI or kidneys however they're not completely sure. As you know the priority is to get the IVAs up as quick as poss and other than the initial blood tests which confirmed the sepsis, it was 2 days before I actually had scans and tests and these then proved inconclusive.
Like you I was too scared to take my abatacept and mtx and I didn't get a lot of advice. I did ring the nurse helpline but the nurse I spoke with isn't one of the better ones and I'm sure wasn't properly listening to me. It was only when I saw my consultant about a month later that he said it would be fine to start them again and I have. I'm loathed to stop taking them now as I think on top of the post sepsis recovery, to have a major RA flare would be really bad. I think the depo I had is keeping it controlled whilst the meds kick in again.
I've had some messages with Allanah and like you she said it was about a 6 month recovery. She did say she did return to her normal afterwards.
Would you say that after recovering you're back to your normal now? That for me is such a big thing now, as if I can't get there I'm not going to be able to do my new job. I was pushing myself to do it anyway.
Your experiences pre and post sepsis sounds similar to the first time I had it only for far different reasons.......
This is the fist time I've spoke about this here, so for what it's worth...After being diagnosed I was transferred from my local hospital to our main hospital 12 miles away. The doc informed me I would be operated on immediately at A&E by a Dr Jones. I arrived there by ambulance some 8 hours later to find out that they had never heard of me. Was then taken up to the assessment ward where, surprise surprise, there were no beds available. I felt sorry for the poor ward sister who couldn't apologise enough and was on the phone for what seemed like ages trying to find a place for me. I ended up spending the rest of the night on a saline drip in a reclining chair in the waiting room with several other patients. The next morning they managed to find a bed for me and I was given IVAs. Later that day a bed was finally became available on the orthopaedic & trauma ward and I was operated on the next day. Thankfully the infection was cleaned out after two ops on my hip. They later scanned my heart to see if any infection had reached there, which apparently it tends to do...now that was scary!!
There was so much going on in my life at the time that I can't really recall what happened in the following months after leaving hospital, but I know I didn't see anyone until I phoned rheumy in desperation about going back on mtx. I'm not blaming anyone here as I probably should have phoned for advice much earlier. The thing is I was so scared and determined not to go back on meds again that I wrongly thought I could see things through on my own.
My body seems to have recovered ok with the big exception of my lungs, which unfortunately have suffered some scarring. Can't be sure, but this probably occurred during my cold turkey period when I developed a really nasty prolonged cough. The scarring could have been due to the high levels of inflammation I was having, but they're really not sure, although they seem pretty sure it's RA related. I had to stop the mtx because it could cause further lung issues.
I'm still not taking immune suppressants, which rheumy have agreed to, at least up until now. I'v been on hydroxy since my lung diagnosis. It has helped but it's not as effective as mtx and enbrel, which put me in remission before I had sepsis. I'm seeing rheumy a week tomorrow about starting a new med for my RA, but am not at all sure I am going ahead with it, once again because of the sepsis risk, which I feel is definitely not without substance as I have not had a single UTI since stopping immune suppressants nearly 2 years ago. Would have had several during that time when I was on meds. Best add that the reason I have recurring UTIs is because I have a chronic bladder condition....well I did say it was all rather complicated!
The one thing in our favour having got through sepsis relatively intact, is that they now know what to look for and start immediate treatment the next time we show the slightest symptoms, which hopefully won't arise ever again! At least that's what the plans are for me, especially as my UTI bug, an e. coli type, is resistant to all common antibiotics.
and I thought my first post was long! Just hope you find something else of interest there.
Crumbs wishbone you certainly did not have a good time. I can't believe they left you in a chair overnight!!
Thank you so much for sharing all of that as some of it might have been tough taking yourself back so I really appreciate it. It's good to know I'm not alone. It's also good to know that a full recovery is likely even though it may take some time. I sort of don't mind waiting provided I know I'll get there.
I was lucky as there's no apparent physical damage as a result of the sepsis. That said, I heed your point about subsequent lung damage due to your high levels of inflammation. I need to keep a check on this with my high crp. I'm sure it's this that's making me feel so awful most of the time as I was better than this a few weeks ago.
So, I did email my rheumy team this morning to ask for advice so I'm not just sitting back doing nothing. There may suggest something, maybe I need more antibiotics but at least I'm asking questions now where I might get answers and advice.
One thing I'm getting a lot of is changes in body temperature. I do check it sometimes and it's normal but I'm often getting really hot and getting sweats. Not sure if this might be linked to that certain time of my life that comes along when you're a near 50yr old lady!!
I had sepsis and it utterly floored me i was off work about three months I had hydro and physio to get me back on my feet. Was in hospital over three weeks and in HDU for a few days. I reckon it was over a year before I was back to normal and I was fit and in my 20 then. They are far better at spotting it and treating it that ever before u will recover it’s just the usual look after urself properly and carry on.
Thank you for replying as although it isn't encorouging to hear that recovery is quite long, it's reassuring in that how I am now is to be expected if that makes sense!
Sounds like your sepsis was particularly bad with HDU and a 3 week stay. Really pleased to hear you did make a full recovery and perhaps the length of your recovery was also due to the severity of your sepsis. That said, I'm not in my 20s I'm 50 next month eeeek!!
Thanks so much that really kind. I have to say I'm quickly coming round to that idea .. rest until I feel better and don't even think about trying to get back to work until I'm almost there ... may be a long haul but if that's what it needs to get back to 'normal' then I'm up for it 😀
There is some new research about the use of vitamin c in the treatment of sepsis.. Maybe it could help you start to feel better faster. I know that significant illness can really depleat us. I wish you a speedy recovery.
Thank you that's good to hear. Allanah said a-z vitamins really helped her pick up. I did take metatone tonic when I was first discharged, maybe I need to sort some out and make sure there's plenty of Vit C xx
There are quite a few people on here who have had sepsis, so you should get some feedback - it took me about ten months last time to get back to 'normal' for me. I'm lucky in that we have 'hospital at home' locally so was able to stay at home with drip and district nurse/GP monitoring both times. (Although I do think this system puts a lot of strain on my partner who worries he is going to find me dead!)
Yes I can imagine that being a little worrying for your partner but glad you were able to stay home, it's so horrible in hospital and not always great for recovery as it's hard to get good rest!
You say 'last time' have you had it more than once and if you have was there much gap in between ?
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Feel like I have completely failed now and am so low
Anyone having problems at work?
Respiratory Clinic - chest xray and CT scan 🤔
