Sepsis strikes again

[wishbone]

After getting sepsis for a second time (first was 18 months ago) I was discharged from hospital last friday after a week's stay on IVA, which thankfully seems to have done the trick...for the meantime anyway. Due to the infection my RA flared like crazy for the first few days (I could hardly get out of bed for the first couple of mornings) then started to calm down once the antibiotics started taking effect. For folk that are familiar with my situation from previous posts - recent removal of my bladder stone obviously did not allow my long standing infection to clear up like my urologist said it would, and 3 days after finishing the low dose of oral antibiotics that I'd been on for the last 4 months I started feeling unwell and was admitted into hospital. I've also had a nasty skin condition on my face for several months which also flared like crazy. This skin condition has practically been ignored up until now but the docs at the hospital now think it's related with the infection I've had for the past 4 - 5 months, which is something I've suspected for some time. The hospital wasn't long in getting an appointment with a dermatologist and I'm seeing one on tuesday. They are also arranging an urgent appointment with my urologist to see how best to treat my recurring UTIs, possibly long term antibiotics again though I'm not sure this will work as apparently the bug I get has become resistant to all the common antibiotics that come in tablet form...doesn't bode well does it! Somewhat belated in my books, but at least it now appears as if my condition is finally beginning to get the attention it deserves.

I'm currently feeling ok...in fact my RA is better than it's been for ages and my skin condition has calmed right down. Can only keep my fingers crossed that it lasts. I have a dual appointment with my rheumatologist plus a professor of dermatology on Sept 14th, this appointment was made a couple of months ago by my rheumatologist who has been concerned about my condition for some time. I think she's hoping to start me on stronger RA meds (I'm currently on hydroxy) but that ain't going to happen after this sepsis lark. I'm that worried now that I'm going to ask her about seeing how I get on with my RA by halving my hydroxy, though I think I know what her answer will be.

Sorry for the long rambling post but after the past week or so I'm feeling pretty despondent, not to the point of getting depressed as that ain't going to help me or my family. Suppose I'm looking for some comforting words from the kind folk here as I really don't want to burden all this crap on family and friends.

[Desdmona]

I have had RA/Fibro and more for over a decade. I have had to stop taking MTX every time I pop up with an infection. It is going to become second nature to you after awhile. You have to have the trust of your DR's and they have to trust you to know when its appropriate for you to withhold the MTX. I got really sick and was off MTX for six weeks. I thought I was going to die. The pain and swelling was nearly unbearable. If I would have kept on with the MTX and not alerted DR to impending infection I could have wound up in the hospital like you did.

Any little deviation from your normal body routine is worth noting. For instance my normal temp now is like 97.5 r something like that. If it even goes to normal body temp, 98.6 for me that is a signal my body has an infection. People on immunosuppressants for a long time don't get fevers or normal symptoms of infection. No fevers, nothing. You have to be diligent in your observations and your DR HAS to trust that you know how to recognise or suspect infections due to deviations.

Your not like everyone else any more. After 10 yrs of immunosuppressants I don't even get a fever. I have fever like symptoms, like it is trying to come out but wont. I tell my DRs this.

ER's OMFG don't get me started with these guys!! If your white cell count isn't high or you don't have a fever they are like move along and don't waste our time. I wont take any shit off these people. I tell them after 10yrs of immunosuppressants I wont get a fever and sometimes my white cell count wont go up because DUH.... I take drugs to push it down. I have reported many a DR for insolence and wrong diagnosis.

Stay Strong and bone up on your own disease.. Ha ha bone up La~

Pay attention to what your body is telling you and don't take crap off stupid Attending Physicians.

Blessed Be

[wishbone in reply to Desdmona]

Thanks for that Desdmona, some very useful advice there.

I've been on immune suppressants for 13 years and like you I get very little in the way of symptoms when I get an infection. This infection was spotted by chance when rheumy tested my urine for bone marrow protein some 4 - 5 months back. I was on mtx at the time which was stopped straight away. The only indication I had that something wasn't right this time was a slight loss of appetite and my temp rose from its usual 36.5 or so to 37.5 - 38.0 for a day or so before I went to hospital. So yes as you can see I do check on my temp. but only when I think somethings not right, but after what you've said I'll be checking it on a daily basis from now on. This current infection was said to be nitrofurontein sensitive, but after several 7 day courses prescribed by my GP the infection was still present though seemingly subdued by the nitrofurentoin. Looking back I think red flags should have been flying back then but no one seemed to take any notice until the infection really got a grip and I decided to go to hospital. Suppose I really should have gone to my GP first but I can't say I've got much faith in them. I also had a bladder stone removed during that time so that's why I was put on a low dose of nitrofurantoin for a couple of months so as to cover me for the surgery.

The first time I had sepsis the infection started as a UTI, which apparently cleared after taking antibiotics, but the bug somehow managed to get into my hip. It hit me very sudden - woke up one morning and the pain was so excruciating that I could not walk. No other symptoms were present prior to that.

As mentioned, I don't have much confidence in my GPs but can't speak highly enough of the doctors I was under in hospital. In particular the junior doctor who really took notice of what I said to him and got things going in arranging urgent appointments with dermatology and urology. Just hope they take similar notice when I explain the situation to them, especially my urologist who seems to have been a bit complacent in the past. As you quite rightly say... there's no more taking crap here from now on.

Thanks again and hope things go well for you.

[Desdmona in reply to wishbone]

If you don't like or trust your GP then FIRE THEM and get a new one who will actually listen to you. I know it is a scary thought, firing your DR. Thing is if you are not getting the proper health care or the DR isn't listening to you, it hurts you. I fired my GP last year because she wanted me to sign a, "Pain Contract," that was overtly restrictive. I tore it up in her office and told her she was fired. My new GP has me under a pain contract, but the paradigm is something I can live with. Don't let DR's or other people push you around. It's YOUR Life, your disease. Live it on YOUR terms.

Something else for you to think about. When you get an infection try not to use the newer,"carpet bomb" type antibiotics. Save those big guns for later on, when you are really going to need them. I choose older sulfer based antibiotics. They are more pills, but more specifically targeted. That way you hit the infection, but don't frick up your entire digestive system. Excess antibiotics can cause you to get

C Difficile. A horrible imbalance in your colan. Elderly people and us guys get it because our immune system is crap. If that happens your only hope is Vancomycian.. I have had C Diff four times. Once for a few years because my body just wouldn't respond.

[wishbone in reply to Desdmona]

I've seriously thought about changing GPs but the nearest one is several miles farther away and I don't drive. Plus when my RA is flaring, which is often the case, it is difficult enough for me to travel to my current GP which is just one mile down the road.

I believe it was one of the "carpet bomb" type of antibiotics that they used on me this time, think it was called mycetomin or something like that, and yes it has crossed my mind that perhaps they should try lesser antibiotics first and keep the stronger stuff in reserve, especially with this current infection as I was not really ill. That said, I presume they know what they are doing, but can't help thinking that they might be thinking short term and are only concerned with beating this current infection with the most powerful antibiotics to hand and don't give enough thought as to what the future consequences might be. Obviously my big concern is antibiotic resistance. The bug I usually get, an E. coli type, has already become resistant to all the common types of antibiotics so maybe that's why they used the strong stuff? I really don't know and it's all very worrying for me. Don't think I have much say in what type of antibiotics I have but I'm planning on asking my urologist a load of questions about all this stuff when I next see him, which I hope won't be too long.

I told the docs at the hospital that I really need some sort of long term treatment plan regarding these infections, preferably under one regular consultant as I don't think the patchy treatment by different doctors is good for my long term well being, to which they agreed. We will have to wait and see if that takes off......

That C. diff bug doesn't sound too clever. What are the symptoms for that? Hope I'm not getting too paranoid, but I've been getting bouts of indigestion this past couple of months. My GP stopped my naproxen as he thought that might be the main cause but I'm still getting indigestion though less often than when I was on naproxen. He also sent me for a blood test but I couldn't have it done due to being in hospital. Would the reason for the blood test be to check for C. diff?

Are you in the USA by any chance?

PS. does IVA affect the colon/stomach or is it just oral antibiotics? Docs said that I can only have IVA from now on.

[Desdmona in reply to wishbone]

I live in Washington State US. C Diff comes from over use of antibiotics and a weak immune system. Usually only elderly people get it. You know their immune systems are winding down ect. It is always proceeded by some serious antibiotic use. Like the Cipro I have to take when my Diverticulitis flares up.

C Diff symptoms are watery bowel movements(with blood or not) to the point you can get severely dehydrated and die. The big gun antibiotics kill off a certain flora in your colon. The others, (bad flora) left unchecked stay in the colon making your life miserable, that is if you don't die of dehydration first. I first took Vancomycin for it. Didn't work. Tried it again, didn't work. GI DR did something old school for me. He gave me a cholesterol drug called Welchol. It bound up the offending flora in my colon and allowed me to have normal bowel movements. Did that for about three years. Then tried another go at the Vancomycin. This time I stopped all vitamins and minerals and it worked.

I tell my DR straight up I wont take heavy antibiotics unless it is for my diverticulitis. I had sinus infection last week I took Septra. Sulfer based old school antibiotic. It was more pills and I got some slight thrush in my mouth, but it didn't f up my digestive system or my bowels, so win win.

Hope that helps.

Blessed Be

[wishbone in reply to Desdmona]

Good to hear you've got on top of your C.diff.

Think I'm ok in that department as my bowels are working ok. Pity that's not the case with my bladder, that would be the answer to most of my problems.

As mentioned, I really need to have a serious talk with my urologist. So many questions that it will be best write them down with my memory.

Thanks for the advice, much appreciated.

[Desdmona in reply to wishbone]

C Diff can come from oral or IV antibiotics

[nomoreheels]

Hiya Wishy. I do hope the spell on IV antibiotics has done a better job & that's that. Good to hear you're on the better side & your RD's behaving, that's something to be thankful for considering. Pleased to hear that your Rheumy & Dermo are in sinc, let us know what comes of the meet won't you? It seems to have been an age trying to get to the bottom of the cause of the UTI's, again I hope that appointment is fruitful.

Stay strong, as ever we're always here to rant at! x

[wishbone in reply to nomoreheels]

Hiya heelsy, hope things are good with you?

I was given really strong antibiotics by all accounts so let's hope they've done the trick. The reason why I get recurring UTIs is that I have to self catheterise when I need to go to the loo. Apparently most folk only need to do it occasionally, but no not me...my bladder muscles are so weak and useless that I need to catheterise every time I go thus raising the risk of getting a UTI.

Thanks heelsy, will let you know how things go.

Have to say that my skin condition has gradually worsened and has been appalling of late. It's really taken its toll on my rugged good looks.

My wife still loves me though.

[wishbone in reply to nomoreheels]

Forgot to say that a recent CT scan showed no change in my lung condition. I don't need another scan for a year, so some good news there!

[Hidden]

Hi Wishbone. I'm so sorry that you are going through all of this. I can't offer anything that the others here haven't, but just to give you my best and send you hugs (gentle ones).

[wishbone]

Thanks for the kind words Caeryl...that sounds like a Welsh name to me? It's a week tomorrow morning that I had my last IVA - so far so good.

The last time I was on IVA for sepsis I was infection free for approx a year after, but for the first approx 8 months of that period I went cold turkey and stopped all my RA meds to help lower the risk of getting sepsis again, which it appears to have done. Unfortunately my RA eventually got so bad that I had to go on mtx, result being that within a couple of months this current long standing infection started so rheumy put me on hydroxy which is one of the less potent of RA meds. It's all a matter of finding the right balance...the hydroxy is helping my RA a bit but it's not as good as mtx. Still, if it it lowers the risk of me getting a serious infection again, which hopefully it will, then I don't mind having to put up with the extra pain and immobility. Anyway, and as previously mentioned, there's no way that I'll be starting stronger meds after this latest sepsis scare.

Thanks again

[turtlemom2]

I was wondering how you are doing now?

[wishbone in reply to turtlemom2]

Thank you kindly for asking turtlemom, that's very nice of you.

Bit of a mixed bag really, the good news first.... I have not had a single infection since my last post above. The not so good news is my RA is not good at all. I've just posted the about it in my "To phone, or not to phone" thread.

I see that you've recently started methotrexate. I was taking that for getting on 10 years and it worked just fine for me. The only side effects I can recall was the occasional mouth ulcer. I think it took about 10 - 12 weeks to kick in properly with me, but what a relief when it did! I hope it works as well for you.

Good luck.

[turtlemom2 in reply to wishbone]

but it did not last ? the MTX? and I am so sorry your R. A is not getting better. After ten years we hope it has gotten under control and my client was incorrect. However, I am wondering if she was not actually right that your body starts to reject and build up a resistance to the medications after a while. That is when she says her deformatities started. What do you think? Did your medication just stop working?

[wishbone in reply to turtlemom2]

Rats are becoming resistant to warfarin, bacteria are becoming, or already are resistant to antibiotics. Indeed the E. coli type bug that causes my UTIs (see below) has become resistant to all of the common antibiotics that a UK GP can prescribe, and the speed it did so was frightening! So I see no reason at all why our bodies don't build up resistances to meds, as may be happening with the batricitinib I'm currently taking. Mtx did eventually start to become less effective, but on hindsight I made the mistake of not continuing with it for longer as my pain was noticeably less than it is now. I could even have tried another DMARD, but instead I went in search of the holy grail and started taking a more potent biological med called enbrel, and it was indeed fantastic while it lasted! Unfortunately It turned out to be a big mistake!..within a few months I was in hospital with septic arthritis in my hip...ouch!! I would probably have been fine taking it if wasn't for a chronic bladder condition I'd contracted approx a year previous, which resulted in frequent UTIs. The orthopaedic consultant at the time was confident that enbrel was to blame for allowing a recent UTI bug easy access to my blood stream and advised me not to take biological meds again. A year later I was hospitalised again with sepsis, this time while taking the less potent mtx, which my rheumy had decided to put me back on after enbrel. So that meant me and methotrexate parting company again and I've had problems with meds ever since.

Take care and thanks again for your kind thoughts.