LUPUS UK

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Hi all I have posted before but not had a diagnosis of any SLE but have diagnosed Raynauds think it was ANA test I had for this , i also suffer mainly right sided joint pain, oral lichen planus ,small intermittent itchy rash on right ankle headaches and constant UTI and microscopic haematuria even when no infection...currently on my eighth lot of antibiotics since April this year alone but been having problems for at least 3-4 years now ...had USS , cystoscopy and CT but cant find whats causing UTI.......found last couple of times I had UTI my joints especially in my foot an hip have been more achy then normal does this happen to anyone else

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Bladder conditions

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Calafia

3 years ago

Hi Kaz,

I too have mostly right side pain. Not sure why or what it means.

I used to have constant UTI about 10 years before I was diagnosed w/ Lupus SLE. I was on a low dose of antibiotics for 2 years and switched doctors. The new doctor told me he thought bacteria was trapped in my intestines and gave me a high dose of Cipro for 3 months and I have never had a UTI again.

I can understand why your joints hurt more because your body is fighting an infection that is increasing inflammation.

My non-medically educated opinion is that you need to take a probiotic to help the balance in your body after all the good bacteria are getting killed w/ the antibiotics. I'm in the states and take a high powered brand called GutPro. No doubt there a product that is similar locally.

May you feel better soon; re-occurring UTI is horrific and can't image having joint pain at the same time.

All the best,

Calafia

Barnclown

3 years ago

When I have a UTI (I've had plenty & have developed antibiotic resistance to the usual antibiotics for these, do am allowed a box of cefalexin even 500mg at home in anticipation) I do ache all over, even in joints that aren't close to my urinary tract or kidneys. So , up to a point, I can relate to your experience.

I haven't had my predisposition to UTIs investigated to the extent you have. But, for what it's worth, I can say that over the past 4 years my drs & i have managed to reduce their frequency thanks mainly to my nhs gyn treatment plan:

-for lichen Sclerosus & vaginal sicca (daily prescription meds routines: emulsiderm bidet baths after showering + only use weleda calendula shower cream & never apply soap to undercarriage directly + dermovate ointment + replens MD)

-for pelvic floor strengthening: I thought I was already sorted via years of pilates, but nhs gyn Physio pelvic floor exercises + pulsed shortwave diathermy treatments + dilator training taught me how much fitter I could become down below

-I do all the usual anti- UTI lifestyle management routines including anti inflammation diet+ Supplements (inc high vit D & omegas + solgar cranflora probiotics&vitC) etc etc

I'm interested you have lichen planus. I have the oral version of lichen planus. Which version do you have?

Glad you've got some good replies already

Wishing you all the very best

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Barnclown

in reply to SuePlu

3 years ago

Good question...and vvvv important! I spent most of my life getting this v wrong (long story). It was only when I was diagnosed with Lichen Sclerosus in approx 2006 that I discovered the answer to your question, and my quality of life has improved a lot as a result. I was in my 50s in 2006, and had early menopause + my version of lupus had not been recognised. Now I know that undercarriages do best with the same sort of gentle care as all our most delicate areas (eyes, nasal passages, ear channels etc)...this is true whether you have lupus or not, and whether you have a gyn condition or not. And it's even more important as we grow older

Fortunately we caught my Lichen Sclerosus early (my mother, who has been hypothyroid since perimenopause, let her case go without diagnosis until it was severe in her 80s...so I recognised the signs right away). The gyn who set up my LS treatment plan prescribed the emollient named Emulsiderm, to be diluted with water and irrigate the undercarriage total area daily. I do this in our bidet after showering....this way I know that any residue of any shampoo or weleda calendula shower wash that has inadvertently reached my undercarriage is immediately irrigated away. I also do this emulsiderm irrigation after sex.

Emulsiderm is good for me, and it's also available Over The Counter eg from Amazon, but there are other OTC emollients, and many women just use that OTC stuff in a tub called Aqueous Cream (white sort of cream people with sensitive skins use instead of soap). Many even coat their undercarriages with this tub stuff before bathing/showering just to keep soap residue off. Personally, this Aqueous Cream irritates my skin, so I avoid it & stick to bathing/showering with weleda baby products & irrigating with emulsiderm. Before prescribing emulsiderm, my gp & my gyn got me to try a pea sized dab of topical HRT slipped in down there to plump my tissues at the 2 openings (vag & urethera)...apparently this helps some women, but I just got terrible rashes to all the topical HRT products.

We're lucky to have a bidet. On my LS forum, sufferers use portable bidets (available online) they set into the toilet seat, and others use irrigation bottles (manufactured for use by those who have given birth etc). I discovered that the bottle I use for sinus rinsing is great for this irrigating too...so I use that when I'm away from our bidet

Hope that makes sense?

kazhodluckymilo17

3 years ago

Thanks for replies all that makes sense now Calafia regarding the joints ..... and its Oral Lichen Planus that I have Barnclown.....and I havent been diagnosed with Lupus or any other associated condition except for the Raynauds ... I struggle to get answers for anything going on with me Purpletop I have had bloods taken a few times over the last few years but I have never been told what they were for ..... need to start standing up for my health and ask .... all I know is that for the last few years I seem to be getting one issue after the other and have asked for referral to rheumatologist but my GP doesn't see a reason for being referred.... I felt like I a fool for even suggesting it...I am lucky I guess because reading some of the posts on here my issues are tiny compared to some.

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SuePlu

in reply to kazhodluckymilo17

3 years ago

You should definetly start taking charge of managing your healthcare. Here is one suggestion. I got a 3 ring notebook binder and dividers. I used the dividers for different categories, such as lab tests, miscellaneous tests, hospital reports, Doctor notes, and a couple of others that I can't remember. I take this to every appt and when I am there, IN PERSON, I ask for copies of any labs that were done prior to the visits, any other reports, etc. I then take them home, usually go through them myself, the put them in the appropriate place in the notebook. This is especially useful for the times that you see a new doctor and they haven't received the reports from the referring doctor. This happens ALL the time!

Just a thought of something that has really worked for me. Good luck in things in this crazy journey. Those stages of trying to get a diagnosis of lupus are stressful! Every little tip or hint that you can get helps you out!

Take care and let us know how it all turns out!

Sue

kazhodluckymilo17

3 years ago

My sister has it too when she is stressed...... i get sore patches inside cheek areas if eat anything spicy or sour it stings like crazy... roof of my mouth and tongue I get blisters and find it painful to eat drink brush my teeth etc ....my gums feel swollen at times too but no blisters ouside mouth or chin...... biopsy over 2 years ago and prescribed betamethasone soluble tablets that you dissolve in water and swill around inside mouth up to four times a day ... I used when needed...... they do help and I have been fine for a while but now with the UTI, roof of my mouth is sore and gums have bled for last couple days when brushing teeth.....query Whether mercury fillings cause some problems they advised me at hospital to have a chat with dentist into having mine changed to white but some of mine are so old im sure my teeth would fall apart if they tried to drill the things out.

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