Ooh might actually be getting somewhere!

Hi all,

Hope you are all fab!

The last month has been its usual round of horrendous ness but with a new symptom/thing thrown in for good measure.

I am on low dose anti biotics for recurrent uti and they had been doing brill. Then I started to get a dull thobbing ache in my lower left side/back. Didn't think much of it.

As we do I ignored it for a week until I couldn't sleep one night. Went to the docs the next day and was asked to do a wee sample. Took the pot and did the sample. I was horrified! It looked like watered down ribena. The doc dip tested it and, no surprise, it came up with blood and white cells. She sent it off to the lab to see if it would grow anything and gave me stronger antibiotics. She also gave me codeine, paracetamol and oramorph for pain.

The following few days were awful. Couldn't sleep couldn't get comfortable and the pain just wouldn't get under control.

Anyway went back to the gp and they sent me to the surgical assessment unit. They eventually did a ct scan thinking it was kidney stones. The ct scan came back normal, no stones no inflammation no nothing to explain the pain and the weeing blood! They discharged me telling me it was probably muscular.

This was about 3 weks ago and I am still in pain, not as bad, but its still there.

Then I got hit with a 5 day migraine complete with nausea, light flashes, dizzy spells, light sensitivity and noise sensitivity.

In the middle of this attack I had an appointment with the haematology peeps.

I kind of lost it totally in the appointment, to be honest! I asked them of they could to please test me for anything that could be causing not only the clotting but also all the other symptoms I have been having over the last 3 years. She started to say that it would not alter my treatment and blah blah blah. So I cut her off and said I knew that but I need to know not just for my sanity but also for my children.

She relented and said she would go over all my old records to see what I have been tested for and consult her boss and get back to me.

She phoned me the next day and said she was sending me a blood form to take to my gp. The form arrived this morning with the following tests on it;

DS DNA

ANCA

Anticardiolipin antibodies

ANA1 antinuclear antibody

So I need to book the appointment with my surgery and get the tests done.

Would it better to wait until I am in a flare or just go up whenever?

Also my youngest son had out of the blue pneumonia the end of September and since then he has been showing the same symptoms as I get. He is on a negotiated timetable for school as he cannot stay awake for the whole day. We are waiting for results of his blood tests but they didn't tests for anything like an autoimmune disease. But its a start.

I am so sorry this post has gone on for so long. I didn't realise I had to get so much off my chest!

Thanks for reading

Sharon xxx

[maybehope]

Don't wait as the ANA, DS DNA and other bloods will show up if you are in a flare or not! Good Luck.

[Hidden in reply to maybehope]

Will phone up first thing Monday morning. Knowing my surgery it will be a few weeks until I get an appointment anyway! Xx

[Sarah4314]

One other thing to consider..if you think you have lupus..you may want to make sure they haven't given you a sulfa antibiotic..they are commonly given for uti's and can cause a lupus flare. Good luck to you and I hope you get some much needed answers. Good for you being your own advocate 💚

[Hidden in reply to Sarah4314]

Ooh I didn't know that!

I am on trimethoprim. Will it say on the info if it is a sulfa one? I will see what I can find in Google.

Thanks xx

[Sarah4314 in reply to Hidden]

I just googled and if I am reading correctly..I think it is....Google about sulfa antibiotics and flares

[Hidden in reply to Sarah4314]

I did and its the worst antibiotic I could be on!!

It's stops working after about 6 months of use and then goes on to cause a whole heap of problems.

Cannot believe the doctors put me on this in the first place.

Going to be having words with someone on Monday morning!!

Thank you so much for pointing this out to me. Xx

[Sarah4314 in reply to Hidden]

In fairness, lupus is so complicated..I don't think too many doctors know that one and it happens quite frequently...because lupus patients tend to get a lot of uti's and that is the antibiotic of choice. In the book the lupus encyclopedia Dr. Thomas recommends to list sulfa antibiotics as an allergy so you can prevent being given it. All the best to you 💚

[Hidden in reply to Sarah4314]

In the list of side effects and recommended people to not give it to are people who have a history of clotting. Even before the lupus even came onto the stage this was the main problem in my life. It really annoys me that my gp and the consultant who pit me on this knew it would be the worse one as it is known to make any clotting disorders worse.

I have been on them for over 12 months and it is quite worrying to think about what damage or problems they might have caused.

Anywho going to bed now with some hot milk and a good book!!

XXX

[Sarah4314 in reply to Hidden]

I know we really have to be our own advocate. Good for you ..enjoy sleep

[maybehope in reply to Sarah4314]

Very interesting as I too have SLE and take the same antibiotic!

[misty14]

Hi Shazzros

Sorry to read your having a tough time. Something for you to think about re your bladder. I had similar symptoms, blood in pee and felt ill like it was an infection but frequently tested for one and it was always clear. I saw an Urologist , had a cystoscopy test where they found inflammation and was given a diagnosis of interstitial cystitis , it mimics symptoms of an infection but is treated differently!. Just thought I'd pass this on. Good luck for getting those blood tests , hope you get answers and help soon. X

[EOLHPC]

You've got some great replies, shazzros

For what it's worth, I'll just add:

this year I've also been investigated at length by urology for complex persistent UTIs + pyelonephritis....I started having these probs in my 20s....way before my infant onset lupus diagnosis was recovered. All those years, my gps just gave me antibiotics...inc trimethoprim: eventually they stopped giving me trim. because it literally failed to cure my infections...they assumed i had developed resistance. sorry for being dim, but is trimethorpin the antibiotic you're taking low dose? (as i understand it, trim on its own isn't a sulfa antibitotic, but when trim is often combined with the sulfa antibitioc sulfamethoxazole, e.g. from wiki: Trimethoprim and sulfamethoxazole are commonly used in combination due to possible synergistic effects, and reduced development of resistance. This benefit has been questioned.)

my urology infection symptoms always have been a lot like the ones you describe....and the infection onset has been very rapid and very severe: i call them 'galloping volcanic infections' because not only is my urinary tract involved, but i also get chills, i vomit & have diarrhea, i basically am totally out of it, and of course the pain + burning is horrific (as the years passed, back pain became an increasing part of the mix), and of course there was all the horrible stuff visible in my samples: blood, tissue etc etc

Anyway, in 2010-11 when I was in my late 50s, my lupus diagnosis was recovered, systemic immunosuppressive treatment began to help and I was referred to loads of speciality clinics for investigations of my typically-lupus collection of multisystem problems, This year, we tackled my urological issues....my urology surgeon performed rigid cystoscope with biopsies under general anaesthetic. Afterwards, she explained that I have also got "abacterial cystitis" running alongside my predisposition to these UTIs + pyelonephritis. She said 'interstitial cystitis', 'abacterial cystitis' & 'urethral syndrome' are all terms covering the same type of urological condition...but that research indicates these abacterial problems are not yet fully understood...for instance, short courses of high dose antibiotics do seem to help damp flares down even when lab tests cannot find evidence of bacterial infection. And she also said that it's fairly common for women with sjogrens, lupus etc to several different types of urological conditions running alongside each other. She has me on the prophylactic antibiotic nitrofurantoin.

My immunologist says we immune-dysfunction women are much more prone to these various urological conditions than men, simply cause we have much much shorter urethras...which makes us much more likely to get this stuff even when we're conscientiously doing all the right lifestyle management stuff (I've certainly been doing all that for decades). Immunology has me packing home emergency kits of coamoxiclav 625mg (a 2 week course) and red-lidded lab sample pots + my own home urinalysis strip test kits....it's crucial to take the lab samples & do the home tests before starting antibiotics, so that the actual type of bacteria involved can be identified and antibiotic treatment specifically tailored accordingly

Hope something in all that can be useful to you

Please let us know how you get on...i do so very much hope your medics figure out soon what's underlying all this stuff you're having to manage

XO🍀🌻 coco

[Hidden in reply to EOLHPC]

Wow thank you for the amazing reply!

I am just on trimethoprim. I was on nitrofuratonin. I was put on that by the urology consultant I saw but my gp said long term use was bad for the kidneys and put me on the trimethoprim instead.

I had a full set of tests, including a bladder scan, had to do a fluids in and out chart, that was lovely had to measure everything in and out! Mine were not just uti they would be there for a few days then go straight for my kidneys. The consultant said she had not seen anything like it before as it was so aggressive.

I honestly think that long term use of any antibiotics can cause problems but I would rather not go through the horrendous pain of a kidney infection every 3 weeks!

I still get twinges every now and then but that's usually because I have not been drinking enough. As I have a stoma as well I get dehydrated really fast and I need to drink more than people without one.

XXX

[EOLHPC in reply to Hidden]

No fun at all is it! Yes, that's exactly what my UTIs do: but mine go straight to the kidneys (I.e. Pyelonephritis, is what my urology consultant calls this type of kidney infection). My kidneys get infected within hours of UTI onset. And yes, my consultant also said this is v unusual (of course now am thinking: maybe not so unusual for immune dysfunction patients...but, shazzros, you're one of the vvvv few I've found who share this severity of urological infections with me....crazy isn't it?!)

It sounds as if you've not had lab tests done to ID the specific bacteria involved. Why? This is the FIRST thing urology insisted on in my case, and immunology too. Apparently we really do need to know which bacteria are involved. Hope you'll ask your consultant & GP about this

As of last spring, I only take nitrofurantoin 100mg 1x per week....and So far, no urology infections. But my pattern is infections flaring during winter...so have my fingers crossed! I see the urology surgeon in a few weeks....wondering what she'll say now

You're right: good hydration is one of THE most important things in lifestyle management prevention of UTIs & pyelonephritis. Apologies for asking, but If you don't mind: (no hard feelings if you'd rather not discuss) but what is your stoma for....ileostomy, colostomy ....?). I have some experience of these thanks to family members (one quite young).

Wishing you every ounce of good luck with this

🍀🍀🍀🍀🍀🍀 XO

[Hidden in reply to EOLHPC]

Oh hun. Ask me anything I don't mind!!!

I had aggressive Ulcerative Colitis. Diagnosed late 2010. By the end of 2011 I couldn't digest any food. Was medicine resistant and had a really bad reaction to steroids. The only options I had was to carry on having those god awful meal supplement things or have surgery.

I had a sub total colectomy done in Feb 2012. Basically means i had my whole large bowel removed. I felt amazing whrn i woke up after the op.

3 weeks later had my first major p.e. Was originally hoping to have an internal pouch reconstruction but then the other p.e's came along followed closely by the dvts and that went right out the window. So my ostomy is here to stay! I don't mind. It's funny really because its the one bit of my body that actually works how its supposed to and gives me the littlest trouble.

I don't know why the urologist didn't do those tests. It might be because o have not been diagnosed with anything specific. I don't know to be honest. I might bring it up when I see my gp next.

Feel free to ask me anything else I honestly do not mind XXX

[EOLHPC in reply to Hidden]

You're a star! My family ostomy cases are: tumour=colostomy (in her 80s) & crohns=ileostomy (in her 40s). They're both stars too. No pouches possible. The ileostomy has a vaginal-rectal fistula complicating things

Of course, the management is what it is, but they're both here enjoying life as much as poss....am SO GLAD🤗 yours is really helping....this is what the treatment game is about, 1 way or another.

XOXO

[Hidden]

Hi all.

Thought I would let you know I had my bloods done yesterday. Just need to wait now until 11th December to get the results.

Xx

[Hidden]

Ok so got my results today.

Saw a different gp than usual. All of my results are normal except for perinuclear anca.

This was positive. Not sure of any numbers and the gp didn't understand any of the results.

He is going to write to haematology and see if we can get a clear answer.

Kind of feeling this will be just brushed off as nothing and I will be back to square one again.

It's taken me 2 years to get haematology to even do the tests that I had done.

I tried to explain to the gp that it's not just the clotting factor its the rest of it as well. He seemed confused as to why its taken them so long to do anything.

All haematology care about is blood. Not about the organs it goes to or affects.

My migraines are increasing in frequency and duration.

It's not lupus unless my bloods are being weird again, wouldn't be the first time, so that's something I suppose but still don't have an answer.

Anyway hope you are all fabulous as always.

Sharon xx