Anyone experienced this ? Help / Advice .... aggghh

[Binkyboy]

Hello All,

I’ve written on this forum a couple of times and in times of need I’m writing to see if anyone has been in the same situation...

To recap...

My wife went in to Hospital with a very painful shoulder so much so she could not move it and was in severe pain .

Wife was on embrel.

A&E administered antibiotic then orthaepeadic completed aspiration . Unfortunately they weren’t able to know what bacteria caused infection because the fluid aspirated was diluted somewhat.

We were told it was septic arthritis and after iv antibiotics , she was given a course of six week antibiotics; rimfampicin and fluoxcillin and told that she could NOT take her anti tnf / embrel because they need to ensure the infection was clear.

2 good weeks afterwards followed by stress of getting married and then a massive flare up.

2 weeks ago ended up in a&e again as pain was severe and temperature up and down. Since then she has been in hospital with limited mobility and pain which goes up and down.

Thankfully we are in the hospital that her specialist RA team are based.

Currently she’s taking her predisolone , diclofenic and OxyContin for pain relief. She’s had MRI, ULtra sound to rule out anything untoward in her back and also heart scan. All come back okay,

Pain still there 2 weeks on, about 7/10 on the pain scale: she’s getting better nights sleep and when she does get stiff and painful her temperature goes up to 37.7... when she gets hot and stressed and panicked.

She knows her body and knows that the embrel will sort everything out but her rheumatologist is concerned about her going back on to an anti tnf so soon....however he is outweighing risks with benefits and current situation..... Monday is the day he discusses with her. If she was to go back on the anti tnf they’ve said that she would be on an antibiotic (her six week up they’re continuing on a new one) and monitor closely.

Not quite sure what I’m asking but I’m trying my best to give her positive thoughts etc and if anyone could get back to me privately or on here with stories of a similar ilk or words of advice / wisdom it would be very much appreciated.

For now we continue to keep calm and comfortable and I’m enjoying the overnights in her hospital room sleeping on the camp bed ... thanks goodness for Halfords.

[Carolsos]

Hi I have not had this but just wanted to wish your wife a speedy recovery and you take care too. Carol x

[weathervane]

Sending you both lots of positive thoughts, the hospital is the best place to be at the moment , I hope the treatment works soon and you can both get home . Best wishes 🌸🌸🌸🌸

[Binkyboy in reply to weathervane]

Thank you 😊

[Ali_H]

I would listen closely to the rheumatologist as septic can be tricky to treat and any immunosuppressant will diminish the body's ability to fight the infection. The last thing you want is for the infection to have appeared to have been cleared up, restart the immunosuppressant and the infection get a strong grip again. Go steady and find little things to enjoy - hospital camping movie night with favourite ice-cream& exotic fruits?? Curling up and reading to her a favourite book??

All the best

Ali

[Binkyboy in reply to Ali_H]

That’s a great idea!

[wishbone in reply to Ali_H]

Wholeheartedly agree with what you say there, Ali. I was on enbrel when I had septic arthritis in my hip 2 1/2 years ago...ouch!!! The consultant thought the septic arthritis originated from a UTI I had a fortnight previous. He also believed that enbrel played a significant roll in allowing the UTI bug easier access into my bloodstream. He advised me not to take it, or any other potent biologic meds again. As I get recurring UTIs, I did not need telling twice, and not only did I stop biologics, I also stopped taking all types of immune suppressing meds. Should add that my RA did suffer from the consequences of this.

Despite stopping the above meds, I still had another bout of sepsis a year ago following bladder surgery to remove a stone, though it was nowhere near as bad as the previous episode. I'm in for another op to remove more bladder stones next friday (all digits firmly crossed for that one). Urology wanted to start me on pre-op course of nitrofurentoin to try protect me from infection over the surgery period, which is the same antibiotic they used to try to protect me from infection when I had bladder surgery a year ago??? Apparently, my urine tests always show high levels of bacteria, which seem to live in harmony with me as I have not had a symptomatic UTI for over a year - something that stopping immune suppressing meds may be responsible for? I would have had at least two symptomatic UTIs during that period when taking immune suppressors.

Anyway, I was surprised by how I had to keep insisting to urology that even though my urine tests showed the bacteria to be nitrofurentoin sensitive in the lab, that certainly was not the case in my body. Eventually urology took heed of what I was saying, and at my suggestion they spoke to microbiology, who have recommended a certain antibiotic which they think will do the job. Apparently this antibiotic is quite expensive so let's hope it's worth the cost.

Apologies for such a long reply, but in these times of increasing antibiotic resistance I thought my experiences may be of interest to some people who read it. Also, how sometimes patients should not be afraid to speak up if they think the treatment they are being given might not be appropriate. After all, most of us know our own bodies, at least to a certain extent.

Obviously, I'm still concerned about friday's op, but not so much as I would be if urology had insisted on giving me nitrofurentoin.

edit...should add that as was the case with binkyboy's wife, the bacteria that caused my septic arthritis also could not be identified. Not sure this is a good thing as they can't use a specific antibiotic to try to kill the bug, instead they have to blanket bomb it with whatever mixture of antibiotics they think might do the trick.

Hope your wife gets better soon

[nomoreheels in reply to wishbone]

Add my crossed digits for next Friday Wishy, hope all goes as smoothly as poss.

[wishbone in reply to nomoreheels]

Thanks heelsy, Got me down a bit to be honest has the above malarkey. Staying positive though.......

[Ali_H]

P.s. I sleep with a cold damp flannel on my eyes or the back of my neck which helps me keep cooler and thus sleep better which might help keep her temperature down.

[Binkyboy in reply to Ali_H]

Will try this out thank you!

[ruth_p]

The problem is the symptoms of the RA and the infection are quite similar so the rheumatologist is right to be concerned about her going back on the Enbrel. However trying the Enbrel might take away the RA symptoms. Just be aware that the Enbrel might not work again if she's been off it a while, so they may try humira instead. She is definitely in the right place though. Sending positive thoughts and hugs. 🤗

[Binkyboy in reply to ruth_p]

Ah yes , Thank you 😊

[Ali_H]

Also do remember to look after yourself in all this as these times will take their toll on your own Wellbeing including 'mental wellbeing' so do take time to talk to mates/family directly (as well as us) and spend some quality time doing positive things that replienish you.

All the best

Ali

[Binkyboy]

Hi all , just an update;

My wife came home on Friday after being readministered her Enbrel. We were stuck in a rock and hard place as the rheumatism just wasn’t calming down. Lo and behold , it’s amazing to see how better and flexible she is even after 24hrs of taking it. The consultant is sceptical as to whether she had an infection in the first place now but she is on antibiotic for the foreseeable just in case. Slow days to start with her getting used to be able to walk again but she seems to be coming on in leaps and bounds so far with the aid of crutches, she made a very good attempt of climbing the stairs at her mums last night and succeeded! She felt a bit groggy this afternoon but I think that’s down to the medication and getting used to being home and sleeping much longer uninterrupted!

Fingers crossed things are on the up .

Thanks for the support.