Hi all, I don't often post on here but read the majority of posts and am often helped by them and the fantastic replies. What a brilliant site.
Yet again I am suffering with cystitis symptoms and yet again the tests have come back clear, no infection. Does anyone have this problem. I'm not one for googling for answers but have today and worried myself re interstitial cystitis which apparently is linked to auto immune illnesses such as lupus. I'm seeing my rheumy next week so would appreciate any thoughts. My lupus is classed as mild, no organ involvement. Thank you
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jayfer
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Yes I get these when I am flaring as well. I found when I take Azo it helps a little with the discomfort. But sometimes it can go on for weeks. very uncomfortable. I have yet to find anything that aleviates it except rest, and anything to reduce the flare or inflammation. Stay away from excess sugar, at least this is a trigger for me sometimes.
I don't have interstitial cystitis but chronic low grade infections that seldom show up. This has been going on for over forty years and I have seen many different urologists over the years.
They all advised me to take short courses of antibiotics at the very start of symptoms which tends to nip it in the bud.
Unfortunately labs test for only certain organisms and miss many others. They also do not culture the sample for long enough so nothing has time to grow.
Do you have other symptoms?
I always have nausea, shivering, frequency and slight incontinence when I have an infection. If I don't take the antibiotics it then travels up to my kidneys and I become quite ill and need a heavy course of antibiotics.
If you enter "cystitis" into the LUPUS UK website you will find much previous discussion. Cystitis symptoms without infection detected is not uncommon and that some do respond to antibiotics has been established by trials (perhaps because lab testing can give "false negative" results). A trial is usually worth while unless symptoms are minimal and have not responded to increasing fluids and if started early with a good response can be a short course. When they do not settle or keep recurring they need more attention (I wrote a book "Cystitis Survival Guide" many years ago that was available from pharmacies throughout Australia , but has not reprinted but a print out of the Cystitis check list which summarised the main points might be available as a download or a link if the site moderator could offer this. The book was written to help non medical readers and based on 20 years of treating patients not responding to "usual" treatments. The bladder problem known as Interstitial Cystitis is an important possibility if symptoms persist, as are other explanantions, and needs expert input from an interested urologist, nephrologist or uro-gynaecologist for diagnosis and treatment. It is another autoimmune disorder and there are a range of treatments used with variable results, sometimes curative. When cystitis is responsive to antibiotics it is probably not Interstitial cystitis but if cystitis coming keeps coming backafter antibiotics there are a range of strategies, including local hygiene measures, some linked to any sexual activities, and also long term daily antibiotic, best taken before bed. In ladies the use of female hormone vaginal treatment ...... when near to or after the menopause can be very helpful in reducing or stopping attacks.
There is little doubt that some GPS and some specialists have more interest in finding a management that works for every patient with Cystitis than others. So try and find one of those that does have that interest and do not expect the first strategy to be effective, but you might be fortunate but if not accept other suggestions or consider asking for an alternative opinion, perhaps from another specialty.
I was recently referred to urology for these symptoms too, I did have one UTI and since then what feel like recurrences but then the test results come back as normal. The specialist told me that very often the antibiotics just don't clear up the original infection and then it keeps reoccurring but the bacteria isn't enough to show up in the samples. He did say too anyone on steroids or other immune suppressants is particularly susceptible and he said a long course of antibiotics should have helped at the time. I found different antibiotics helped me after months of trying the same ones a different type actually made a difference and seems (fingers crossed) to have for the moment at least solved the problem. I used to find even though the results came back clear I was still prescribed antibiotics and they would help but not fully clear it and the symptoms would creep back that is until I tried a different type.
I hope you get this sorted as it is absolutely miserable.
Hi. I have been suffering with UTI/cystitis. But had cystitis for over 20 years. My testrecently came back as negative, had another two but don't know their results, but again only in labs for a couple of days so not enough time for growth to show full results. Yesterday in pain, fever, shivers, nausea (bad), headaches, irritable, and blood in my urine each time I went toilet (which was often). I have been on antibiotics for 2 weeks and although it helps alieviate the symptoms, a day or two later it flares up again.
Back to GP this morning, as she said she would investigate further if it reoccurrs. I did not think about a connection with Lupus, and think I will just mention it to her also. It is good to read that others have this experience, that it's good you have it, but makes me feel that I'm not making it up in my head, especially when results come back negative.
I hope everyone gets better with their UTI/cystitis issues.
I hope things are improving for you tassiewoo...your story reminds me of my experiences...please urge your GP to consider referral to urology...my gps took 40 years to FINALLY refer me to urology last year...the chief urology surgeon was horrified my gps held back so many years of my infections before referring me to urology. apparently complex patients like us should be referred promptly. I won't go on about my story now, but I have posted a longer reply below. Am wishing all the very best & hoping you'll let us know how this goes.
Have you been given prophylactic antibiotics yet? I ask as I kept showing some "pus cells" in urine testing or high protein and not a specific infection. After about 30 the decided to put me on a continuous course of lower dose trimethoprim which is raised when suffering symptoms. It's not completely got rid of bladder pain or infection, as is used alongside intermittent cathertisation to ensure bladder is voided twice a day. It's not the best solution as a bit embarrassing at 27 but it definitely helps. A continence nurse can teach this.
have had cystitis for over 30 years-anti-biotics only sometimes and now they dont work as well and sometimes its more the 'sting ' than having an infection.Thankfully came across 'cysticlean' on the internet. They have been my savior-I only take them when I feel an attack coming on and continue for a week after.I feel safer now in case I get that horrible uncomfortable feeling and its the week end and you cant get a urine test done.promise you they have been the only thing that helped along with the usual powders you can get from the chemist .pity they arent on the NHS. Would save them a lot of money spent on anti-biotics.hope this helps you
Are they just doing bacteria culture or are they doing microscopy as well ? Even though the urine doesn't grow any bacteria, there still may be evidence of a problem under the microscope by the presence of red blood cells and/or epithelial cells. Even if they don't examine it under the microscope in the lab, is anyone at the Docs doing a dipstick test to check for protein and blood?
Hi, I'm unsure what they did this time as I asked if I could drop a sample off as 1st appt available was 1 wk away! It only took 2 days for results so assume it was just a General test. Go has asked me to take a sample in next time I start with it again. Thank you for replying
The lab could do the microscopy to identify red blood cells etc in less than 5 minutes. A healthcare assistant at the Doctors could check for blood, white cells and protein in about 2 minutes with a labstix. Much quicker than the culture. Have they given you a copy of the lab result? It may be that they've done microscopy and it was also negative, or maybe not
I just went back to an old GP to get all my results after having some recent abnormal blood tests, including a kidney function test, and feeling unwell for over 6 months. I discovered that over 2 years ago my GP sent a urine sample to the lab for microscopy (because there was some protein when the health care assisatnt dipped it with a labstix at my new patient "medical") and it had large amounts of epithelial, pus and red blood cells in it. I was never told about this and had no symptoms of a urine infection, which is worrying.
Wow, thank you everyone for your replies, I rang GP again this morning for an appointment and luckily there was a cancellation for today. I saw a new gp to the practice who has given me a course of antibiotics and has said she will start investigating further if no improvement after antibiotics or recur in near future. It's easier to deal with knowing others have gone through the same and that I'm now being listened to after 2 yrs of suffering. Thank you
It drives me MAD. Both the exquisite agony of cystitis and, " if it doesnt clear up !!"
WHY DO THESE NUMBSKULLS HAVE TO PUT US THROUGH THIS?? I had ditto experience until WOW FEMALE Doc. Immediate ref to urology, all the proper tests and 24/7 one antibiotic per night. NITROFUATOIN. BLESS IT.
At least she said go straight back next week if antibiotics don't help. Partly my fault, in the past I have just asked for sample to be tested and each time it came back clear just put up n shut up type of person. But at the moment I have rash on 2 fingers of 1 hand? for last month, plus eye infections, and this was last straw. Thought I had infection raging I suppose or stopping smoking 3 month ago was the reason ! At least I have some great replies and good advice to follow if gp doesn't help. Again thank you
Hi Jayfer. Hope you are feeling a little better. I will try to keep this as short as possible. I have had IC for many, many years. I am 66 years old and was finally diagnosed following years of misery when I was in my early 40's. I can remember having lots of bladder infections and mysterious problems when I was just a young teen. At any rate, I also am a Primary Immune Disease patient (bubble boy syndrome) with over half a dozen autoimmune disorders so I do believe that there is probably a connection. Whatever the reason, it doesn't much matter when you are suffering with IC. I think that the best doctor to treat you for IC is a urologist, preferably someone with IC experience. Your symptoms sound right for an IC diagnosis. If you frequently feel as though you have a bladder infection but nothing usually shows up, that is classic IC. As you probably know already, IC is an erosion of the bladder and urethra lining. Very painful and difficult to treat. btw, DO NOT drink cranberry juice or any other acidic beverages or foods during a flare up. Although many folks, including doctors, may advise you to do this but it is the worst thing you can do to your poor irritated and inflamed bladder during an episode. The only drug treatment for IC is Elmiron. It has limited success, about 30 percent, and is expensive. Unfortunately, it may take up to a year to know whether you will benefit from this medication. Other treatments include a 'bladder stretch' cystoscopy, which can provide relief for up to a year or more. I have had this procedure several times and it has proven to be a God send for me. Eventually, that may no longer be effective and someone may suggest a transplanted medical device that helps to control urine output. (sorry, I can't remember the name right now). I would not recommend this treatment and actually it is no longer recommended as frequently as it once was. If things continue to worsen, the only thing left to discuss will probably be bladder removal. Don't panic. I still have my bladder and have controlled things with pain medications, steroids (I have to take anyways for another serious disorder), and anti inflammatories. Also, diet control and treating your body accordingly can be beneficial. Ok, sorry for the length. I just hope this help some. BTW, I also have Lupus as well as 5 other auto immune diseases. It's like trying to figure out what came first... the chicken or the egg. At this point, I do not believe that my Lupus caused my IC or vice a versa. I did forget to mention that there are some medications that can aggravate your bladder so that is also something that you will need to research, particularly since we all have different reactions to the same drugs.
Fezzywig , thank you for the info, I just replied below to drink cranberry juice, that is what I was told by the Dr. as well, and this whole time I have been irritating the situation. OMG. Thank you for the info , Jayfer disregard what I said below about cranberry juice then. I had no idea.
I should have added that you can still have IC and contract infections, in fact it is a little easier to get infections since with the erosion of the interior of your bladder, you become more susceptible to germs. Without the appropriate treatment quickly, you can become open to becoming septic, development of kidney infections, and other infections. For women who are lucky enough to still engage in sexual activity it is recommended that they immediately take a strong dose of antibiotic or antibacterial following intercourse and perhaps for a few days afterwards. Looking at the other responses, it seems like most of the bases are getting covered. Good luck to you, and remember, you are NOT going crazy.
Thank you, I'm now going to go to gp everytime it starts instead of just mentioing it as an aside as if its not too much to deal with as i have in past. I do appreciate all replies and advice.
Hello jayfer: thanks for a GRRREAT discussion🌟🌟🌟🌟👏👏👏👏.
The replies cover my experience fairly closely so rather than being repetitive, I'll just add this:
I'm 63, with infant onset lupus and have been dealing with what I now know urology calls Complex Persistence Pattern UTIs + pyelonephritis (kidney infection) since my early 20s. Last year I was finally referred for the 1st time to urology where I underwent cystoscopy with GA etc etc. Urology have been seeing me in clinic every 3 months over the 18 months since these investigations began, because, as they tell me, I'm a complex patient with so many comorbidities.
as I aged, Sjogrens dryness set in, and I increasingly suffered from interstitial cystitis running alongside the recurring infections. Unfortunately my daily treatment for lupus only began 5 years ago, but I'm responding very well and feeling better now than I have since my 20s
Recently immunology put me on daily antibiotics indefinitely due to Primary Immunodeficiency, which predates my treatment with prescription immunosuppressives. And immunology have figured out I have been living for decades with seemingly undetectable pockets of chronic bacteria-driven sepsis in my urinary tract, stomach, upper jawbone & sinuses....which are all now much better damped down thanks to living on daily antibiotics....
so, my case proves that even when lab tests indicate to the contrary, there can be significant chronic urinary tract infection interfering with the quality of life in certain unusual patients... My feeling is that we must try never to think of these infections as "just UTIs" 😉... No matter how emphatically &/or lightly our gps may be shrugging these sort of infections off...our treatment should never be a case of just taking GP prescribed antibiotics...the cause/s underlying recurring persistent infections really need to be identified by urology
Thank you for your great post. It's so helpful to hear from some one who has endured so many similar issues throughout your life. What's even better is that you have continued to make significant progress. I am several years older than you but have yet been unable to get on daily antibiotics. It has been one of the biggest frustrations of my life. May I ask you regarding your Primary Immune Disease at what point were you diagnosed with PI and what type do you have? Are you getting IVIG or SubQ? I have been on infusion therapy for over 10 years and often wonder if that might be why my docs are less concerned with my pleas for antibiotics. I am also now on more immunosuppressant drugs which make everything more urgent and scary for me. I've had pneumonia 4 times just this year. Any insights you might have would be welcomed. Thanks for listening and sharing. fezzy
This has been such a GRRREAT discussion fezzy: am so glad everyone found it & got stuck in
You're coping with an awful lot. Am vvv much feeling for you.
Am relatively new to the concept of primary immunodeficiency, but have worked hard to understand it. My impression is that hypogammaglobulinaemia is key to diagnosis, and with that can go other specific WBC deficiencies (historically, my lymphocytes are always just below normal). Apparently PID often goes undiagnosed.
In my case we don't have historic Ig blood tests from as far back as we do WBC results. So re Igs, we are mainly going on my historic pattern of recurring complex persistence pattern respiratory/ sinus/gastric/irinarurinary infections in hypothesising an early onset PID, BUT we do have several sets of low Ig results from 5 years ago when I'd just had a few months on hydroxy alone. So, the immunology consultants I've been seeing every 3 months for the past year & a half see PID but are continuing vaccinations etc in the course of deciding more precisely what sort of PID has been & is going on.
So far I have virtually no antibodies & none in reaction to any of the pneumonia vacc. Waiting on blood results after haemophilus B vacc.
My understanding is that I'm on daily antibiotics because our chief of immunology is trying to avoid giving me IVIG...but he says I will get IVIG if any infections breakthrough the prophylactic antibiotics. However, I do have a lupus friend who has been in both on prophylactic antibiotics & IVIG.
At the mo, my main feeling is RELIEF to be avoiding IVIG. but, that may be blissful ignorance...I do dread running into the various probs possible with taking antibiotics as I do.
Our chief of immunology didn't hesitate to come up with the chronic pockets of bacteria driven sepsis theory re my chronic sinusitis, urinary tract & gastric symptoms....based on my pos reaction to IV gentamicin during cystoscopy + also long course treatment for UTI + pyelonephritis which damped down the other types of persistent infection. Seems to me this theory could maybe be worth looking at for you?
There is no talk of coming off myco, but some consultants lean towards blaming myco...which I don't because since starting myco I haven't had my usual respiratory infections, AND the urinary tract infections I have had have been no where near as severe (although they are more persistent but rheumatology, urology & I think this is mainly due to early onset sjogrens dryness worsening)
Sorry: gotta go, and have probably missed replying to something you've asked...please PM me if you have anything more we could discuss
Thank you to everyone as well, I learn so much from this site. Always, as others have mentioned, go to the doctor first to see what is going on. My original response eluded to taking over the counter to help, but by no means is it to dismiss the importance of always verifying symptoms with your doctor as others have stated. As is common in many of us suffering from "autoimmune" issues , I say this in quotes because there are so many that impact each of us differently, the opportunity for serious infections and organ involvement is high. So in my short answer originally, I would never ignore symptoms especially since one day can be minor and then suddenly escalate into serious damage. So I concur with others always check out any unusual or re-occurring symptoms. For me, I have been on hydroxychloroquine for 4+ years, somedays are normal, I mean Lupus normal, and then I get slammed with some nasty symptoms that can debilitate, mostly joint and skin issues, fevers, as you all know. The recurring UTI / pain and urgency, in the beginning, I would go to my GP or Gyn. to test for infection and protein as well, all normal and then my Rheumi diagnosed it as interstitial cystitis. So I read on other sites that D-mannose taken daily, the old cranberry juice (unsweetened) and the AZO for days where the pain is intolerable seem to work for me currently. I too made appointment with urologist and all seemed normal. So it is really hard to say. Definitely an inflammatory response, and being 50+ and going through menopause could be the issue. I was temporarily on hormonal treatment and most if not all symptoms related to this "autoimmune" issue including the cystitis seemed to diminish quickly, but I could only stay on them for a short time, per Dr's recommendation, it was to control excessive "flow" that was lasting for over 120+ days, needless to say, when my dermatologist and Nutritionist saw my lab work during that time, they were "freaking out" , cell counts were bottoming out way below normal. But during that time my skin looked fabulous and I actually felt good. no joint pain, but very tired as you can imagine. So to those that have mentioned hormonal treatments, it seems to work, but is not recommended long term. It does depend on your situation, always defer to Dr. care first to determine what is going on. What works for me currently, may not work for all, but definitely, never ignore or dismiss symptoms.
My GP contacted me and I advised her the CoAmoxiclav has not cleared infection. She saw me the same day. Urine shows no trace blood, typical, and she contacted Urology department and advised them on symptoms and what's been going on. They advised Levofloxacin, which apparently is not given lightly, due to lots of side effects, and possible heart arythmia with other medications, especially Hydroxychloroquine. Question asked, would I be prepared to come of Hydroxychloroquine for two weeks.....pain and discomfort. Decided to come of my lupus medication to get these antibiotics. When I read side effects etc, realised I get most of these anyway without this tablet, so how would I know if they are affecting me! Anyway, 3 days in, severe pain in left knee and stiffness, so now using a stick to walk, still slight discomfort with urinary tract, but the pain in joints.....unbearable, but will see it through. GP has done a referral (2 week wait) and appointment given yesterday for 16 August (6 hours for tests, scans and X-rays) So will see what results come from this.
Good luck tassiewoo....will be thinking of you...hope you'll give us an update (maybe start a new post next time so you're sure to catch everyone's attention)
And thanks: your discussion us possibly one of THE BEST On this subject since I joined our wonderful forum 5 years ago
Do not wish to frighten you, but Levofloxcin is a very scary drug. I took it about 10 years ago and experienced bad side effects very shortly after beginning treatment. At the time my doctor said that it was the only treatment for the infection I had at the time. It was a very nasty bug. I was forced to continue and ended up with torn tendons in my arms, legs and shoulders. It took well over a year before I could lift my arms enough to get a bra on. The pain was life altering. I believe that it is considered to be a 'black box' drug, which ain't great. If you have any other choices I would consider opting out and going for another choice. They should be able to identify the bacteria or type of infection and be able to offer you another choice if at all possible. Best wishes to you and nothing of the best going forward.
Hello again fezzy: just read up on levofloxacillin: it sounds a vvvv problematic antibiotic...and especially so for connective tissue/immune dysfunction patients (eg I already have severe tendon tightening) ....sounds like you had no choice: had to take it...was this partly due to the bacteria involved & also to your PID status: what type of PID do you have?
Apologies: was in a rush last night & didn't properly finish my reply (above) but have done so just now
No problem BC. There is always time to get back later on. Anyways, I have Hypogamaglobulinemia and CVID, 'common, variable immune disorder', which is an odd name when there is nothing really 'common' about it. In fact, it is quite rare as most PID's are. The only reason that I had to stay on that particular antibiotic was because it was determined through testing that it was the only medication that would work. It was a fairly unusual type of infection, one that you would probably only be exposed to if you were hospitalized, but regardless, I was doomed from the beginning.
As far as the types and causes of PID, well, you are right, it is somewhat complicated once you start scratching down into it, but there is really no point in being bothered with that unless you get a diagnosis. Once PID is suspected, testing should be relatively simple and then the blood work will just speak for itself. There are some changes in blood work as you continue through life, but the diagnosis of PID should not change. As far as treatment goes your choices are limited. IVIG or SubQ. Depending on how you respond to either of those will determine some of your other defensive treatment i.e. additional antibiotics, frequency of blood testing, dosages of your immunoglobulin etc. There's not much to it really since the treatment for PID is limited to the replacement of IgG only. None of the other immunoglobulin's can be replaced. That's it.
I've gotta run myself for now, but if you have any other questions about PID, feel free to ask. Most of us older patients might probably agree that following our diagnosis's finding information was a challenge, especially reliable information. Most doctors are unfamiliar with it and aren't much help. I have ended up teaching more doctors about it rather than the other way around. A huge bummer after awhile. I would love to come across a solid family doctor or internist who had a clue or at least another patient with PID. Alas, we all have each other thank goodness.
Thanks again fezzywig...that is what I suspected re levofloxacillin....I know what it is to have to submit to long course high dose unusual antibiotics despite severe side effects...you've been through a lot...and levofloxacillin is clearly just one chapter.
Are you living in North America or in the uk? Am guessing maybe North America cause you refer to "internist" & "family doctor"
Yes, everything you've mentioned about PID & CVID is familiar...😏typical me: as of my referral by the chief of my Lupus & Vasculitis clinic to immunology in Jan 2016 I've had a great time researching why my early onset hypogammaglobulinaemia & lymphopenia + lifelong experiences of recurring complex persistence pattern infections are relevant to PID
So, as the past 18 months of immunology investigations progressed in the usual pattern, I've learned quite a lot...my understanding is that CVID is most probably my version of PID
am lucky: i have managed 😉 to find several great PID websites & UK PID forums + my local lupus-PID friend is great company BUT there are very few of us here on forum with PID...here in the uk referrals to immunology clinics are few & far between ...so am extra glad to meet you and v glad you're here
Hi BC. I am in Texas. Although our healthcare systems are generally good, when faced with rare diseases things are still very difficult. Hey, if you are ever lucky enough to get your hands on your blood work results, particularly those including your immunoglobulin levels, I would be happy to help you make sense out of some of them. It can be an overwhelming amount of info to figure out all at once, but after many years of going through all of this I might be able to save you some time. Regardless, I hope you are able to get some definitive labs soon. It can make a world of difference in your life.
👋👋👋👋hello again to you in the grrrreat state of Texas, fezzywig!
Am going to remember your vvvv kind offer ❤️, thanks so much. Feedback & insight from an expert patient in another country's health system is especially precious because the perspective is often significantly different, highlighting all sorts of yummy stuff 👍
I do have a home archive of lots of solid info because I've been keeping print outs & logs of my historic investigations, tests (inc blood results), diagnoses, treatments etc etc since from way back which do include immunologic test results thank goodness (of course these have grown during the past 2 years of immunology clinic investigations & treatment) , and I have become pretty good at interpreting tests & trends (partly because I was registered in BILAG several years ago and the lupus research rheumatologists reviewing my case have been very helpful re interpreting bloods results etc). Also the university hospital I'm at for rheumatology, immunology, gyn onc, ENT, maxillo facial + oral surgery clinics is considered an international centre of excellence...which means many consultants encourage patients to understand & feel more engaged in the testing & treatment process...
care at this hospital tends to mainly be pretty darn great. I feel v lucky...and am taking nothing for granted 😏🍀🍀🍀🍀
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