Just lost most of the last few weeks, because of UTI, shingles, then more UTI, then two sessions in hospital. All fairly trivial in comparison to some of the problems I could get, but seem to have really knocked me back.
I think I've learnt that I must jump more quickly if I suspect an infection, and that I must ask more questions about the antibiotics that are prescribed. And that I don't show up with a temperature, but if I've got one I go into horrible shakes and a racing pulse.
First UTI seems to have been made much harder to treat by the shingles, so went into hospital on Dec 23 for IV antibiotics. But understandably there were no lab tests done when they discharged me on Christmas Day. So it turns out that I was sent out with the wrong antibiotic, never felt well while I was taking them, and a week later it all started up again! So, more hospital, more IV antibiotics and tests, and discharged last weekend.
But, now I'm as nervous as a kitten, feel completely washed out, and any twinge convinces me that I'm sliding back again. Really need to get my confidence back and to start getting back to some form of normality. Any advice very welcome!
The good news is that my next rituximab is booked, but I dare not get another infection or I'll miss it.
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BronteM
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Poor you. You are bound to feel like that after what you have been through. Don't be too hard on yourself your confidence will come back in time. I think I would try some relaxation and let your body and mind heal. Easier said than done ,I know but worth a try.
My chest consultant always says to me get antibiotics sooner rather than later. I did wonder if my GP would think I was a hypochondriac but no, they are always wiling to check me out now given my diagnosis and medication.
Great news about your Rituximab hope it goes well.
My husband has only one lung (as a result of cancer surgery, not lung cancer tho') and obviously it's a bit precious ;-). At first he would wait to go to the doctor (he'd missed the lecture about catching things early) until he was really ill on one occasion. Since then he has carried a "spare" set of antibiotics so he doesn't have to wait to see a GP to get a prescription - haven't met a GP who's argued yet!
Sensible way, to go I think. I got a 'spare set' to take on holiday, just in case. Luckily I still have them. I have managed to avoid an infection this year. She says with fingers and toes crossed, touching wood etc.!!!
You certainly had a rough time of it! UTI and Shingles together sounds horrible.
I know how just you feel about being nervous. I never know if I am having a bad day, a flare, or a UTI or whatever else. Please read below to check on a possible cause for your infections
I have a similar story that I would like to share. I originally wrote it for an MPA blog in the US, where I live.
It is long, but I hope it can help those of us who balance our Rituxan with our immune system.
MANAGING MPA with RITUXAN-- you may have to watch your Immunoglobulin levels
I would like to pass along a potentially serious issue for some of us taking Rituxan. Since Rituxan targets the B cells, when it does its job, it can leave us with very low immunity. I found out in a very dangerous way, while I was traveling by plane to a wedding in Colorado. I normally have stable lab work although I still feel lousy a lot of the time--- exhausted, joint pain, headaches. Because of that, sometimes its hard for me to know when I am really getting sick. During my trip to Colorado, I got lab results en route from my doctor indicating that I had a urinary tract infection. Since I've had UTIs before, I had brought Macrobid, antibiotic with me, and my dr said I should start taking it. I didn't feel well, and the next day I ended up in the emergency room in a tiny rural town. The infection had progressed to the point that, my blood pressure was dropping and with all of the fluids and IV antibiotics, I still went into severe sepsis with BP of 73/35. Sepsis is when an infection (any infection) goes into your blood stream and starts to impact your vital systems and organs. It requires immediate attention and has a very high mortality rate. I had an exceptional doctor who recognized the urgency and I was sent by ambulance, 2 ½ hrs to a city hospital, with a trauma unit. I was in ICU for a few days, and flew home with a pic line in my arm for high power IV antibiotics. I am fine now, though sepsis is frightening and feels like a huge jolt to your body.
I wanted to know:
"How the heck could I have a rather routine UTI, and end up with sepsis in a trauma center?????"
My rheumotologist and I did research (seeing an immunologist) to figure it out. The only factor that could be responsible is my 'screwed up immune system' (doctors words), Low immunoglobulins G,M and A) .
This is all to be expected, since the Rituxan is supposed to attack our overactive immune system. Its just a question of how much.
I am only suggesting that we should all keep tabs on our immune lab work. I cant believe that I went from a pesky infection to life threatening infection within hours, even while on an antibiotic.
So the plan for me now is that I will either hold off on Rituxan and wait and see if my immune (IgG) levels come back up; or they will give me infusion of immunoglobulins to help my immunity, along with Rituxan.
If you take Rituxan, and are having infections, maybe this will be helpful.
Also, everyone with Vasculitis should carry copies of medical info when they travel. If you are very ill, you may not be well enough to explain what MPA is to every doctor and nurse, since so few understand it.
Sorry this is so long, Hope its helpful.
Cheryl
Hi BronteM,
My commiserations for the truly awful month you have had.
On a practical level ( wearing my ITU nurse head now! ) it sounds to me as if the biggest problem was the hospital not identifying the bacteria causing the UTI. Most hospitals have standard antibiotic treatment for different infections. All people presenting with UTI's will receive the same antibiotics ( barring allergies ). The most important thing is to get a urine sample off to the lab before commencing antibiotics so they can culture the organism. Sometimes being on the wrong antibiotics can interfere with the culture and give a false result.
Having antibiotics at home is a really good idea, before starting them just take a urine sample to be sent for testing.
Has anyone ever suggested prophylactic, long term antibiotics?
I would also stress to medical staff, if you are unfortunate enough to need another hospital stay, how unwell you were and that you had an e Coli infection.
Unfortunately sepsis is a big problem but recognition is better. Under the sepsis 6 guidelines IV antibiotics should be given within 1 hr of arriving at hospital, most hospitals have signed up to these now.
I know that what I have written is no use on an emotional level! Early detection of the causing organism and effective treatment is the key.
I hope that you stay well and manage to have your next rituximab, you certainly deserve a break. I think your nervousness is a completely natural response to what has happened. 10 yrs ago I had 3 bouts of pneumonia, 2 of which put me in hospital. For years after that I obsessively took my temp and bugged the Dr's at work to sound my chest!
Thank you so much, everyone, for all the reassurance and good advice. It's a great help and I am trying to follow it all!
One of the problems is that I had a severe reaction to penicillin a few years ago, and was told by the doctor who saw it that I must never take it again...and that rules out some of the standard UTI antibiotics.
But I am currently on the second to last day of the nitrofurantoin that the lab results recommended, and have enough after that to continue with a dose every evening for a couple of weeks. I'm also going to talk to my GP about keeping a regular course at home so that I have something that I can start immediately if this happens again.
I do agree about the speed with which this can happen...The last hospital visit started so fast. I was talking to a neighbour quite normally in the mid afternoon, but by 5.30 I was shaking and had a pulse of 130, and was finding it hard to concentrate, so my GP arranged an immediate admission. By 8 pm I had a cannula in, IV and they'd taken a blood culture, so I can't complain about that!
The problem is that it won't keep away...yesterday was fine, but today is thoroughly uncomfortable again, despite the antibiotics. Thirst back too, even though I keep drinking and have added in the cranberry capsules!
Did learn at the clinic on Tuesday that steroids plus rituximab does mean that I'm more open to UTIs so have got to get the steroids down as far as possible.
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