Kidney & Ureter problems cont... still got nowhere ..

[emmaj]

Hya - i posted a while back about my hospital stay in May where my kidney was inflamed and my ureter was found to be thickened, I had my biopsy done and ended up back in hospital with clots in my kidney. I had the results today and although amyloids,and cancer was ruled out which is a huge relief im still no nearer to finding out what is actually causing it. Yet again im left with something going wrong but no answers and thus no treatment. My worry is like all the other symptoms and manifestations of auto immune disorders its going to be just another problem i have to put up with and try to get on each day living with it, and another long trek and many months round the system and more referrals before somebody takes ownership and even attempts to say what it is or begin to help. Deflated is a major understatement. Im not up to it all.

Im in london 12th Sept and my urologist is writing to st thomas' to get their opinion, so hopefully they will have an idea before i get there what needs to be done, but im feeling not very optimistic considering 2 doctors in london have taken over 5 months to speak to each other to decide what dose of hydrocoxochlrine i can start on - and who knows if theyd have started me on it would this have all happened in the first place with my kidneys, could it have been prevented??

A diagnosis of plyonephritis is still there )inflammation of the kidney) but it doesnt look typical of its usual presentaion (only one part of my kidney is inflamed not all of it) so theres more to it. My ureter is swollen like hes never seen before,but no answers in the blood or biopsy's,and my inflammation levels have come down in my blood. So im left with no clear diagnosis and none of the symptoms are typical of any disorder he knows about, only that hughes is usually an overlapping of more auto immune disorders involving connective tissue,and he thinks I have this and something else. Im so frustrated. I have a feeling im going to go to london and be told i need yet another referral to somebody else there which will take months,then the tests,then the results only to be told they cant make another diagnosis as nothing is showing up. in the meantime I have to put up with horrendous dizziness,nausea,weeing blood,pain and deal with two young children and a home,with very little energy. Sorry for the long one but very down xx

[Manofmendip]

Hi emmaj

Poor you, we are all thinking of you.

Try to keep as bright as you can, I know how hard that can be.

Keep us up to date too please.

Best wishes.

Dave

[emmaj in reply to Manofmendip]

Thanks dave - your always the first there with your support - i'll pick up again - it always just takes a few days of wound licking and positivity to find me again - we always find it though dont we somehow - amazing really !! I just want me back again x

[Manofmendip in reply to emmaj]

Hiya. Yes we do.

I got more of me back when I moved from Warfarin to Frgamin. I'd never willingly go back onto Warfarin. I've never weed blood on Fragmin and I did several times on Warfarin.

Remind me where you are from?

Best wishes.

Dave xx

[emmaj in reply to Manofmendip]

Im in Shropshire - Im going to ask about heparin instead of warfarin, just an extra stress and unstable x

[Manofmendip in reply to emmaj]

You could ask for a two month trial and see how you feel. xx

[emmaj in reply to Manofmendip]

i did a trial of it and always had to have it in pregnancies too, but then they switched me to warfarin - do you inject fragmin like heparin?x

[Manofmendip in reply to emmaj]

Yes Fragmin is low molecular weight Heparin, so tummy is like a pin cushion. xx

[emmaj in reply to Manofmendip]

yes dont miss the bruises!x

[Manofmendip in reply to emmaj]

They are a small price to pay for feeling better though. x

[Lure2]

Hi again emmaj,

I agree with Dave. There are other solutions like Fragmin. It is not only warfarin you can get.

Again I hope you will have an easier life soon and feel better!

Best to you from me

Kerstin

[emmaj in reply to Lure2]

Thanks x

[Sandrapanda]

Hi emmaj, I am so very sorry you are going through this. I have just recently been preparing for egg donation, and due to the change in the meds and hormones (estrogen/lovenox/aspirin) my interstitial cystitis (also auto immune and not well understood by many doctors) has flared for the first time in over ten years, and it has come back with a vengeance. My guess is the estrogen caused the major part of it. The pain, and urgency, as well as inflammation of my urethra was unbearable, and I imagine similar to how you are feeling? My primary care physician had no idea how to help, and my reproductive endocrinologist advised me to find a uro-gynecologist. I did so, and he prescribed something called Vesicare (10 mg.) I am in the US, so I don;t know if you have it in the UK. The last thing I needed was another pill to take, but I did take it and it helped immensely. I can now look forward to an egg transfer in the next few days, and know I will not be in too much pain during or after the procedure. The drug acts as an anti-spasmodic aid and "calms" the bladder and the urethra by preventing the typical spasm that occur with an IC flare up. Perhaps this drug has other uses and could help with the pain you are experiencing? Might be worth it to ask about it. I was also given phenazopyridine ("pyridium") which also helped a bit with the stabbing pains I was getting. I know exactly how you feel with no one Dr. taking ownership of your coordination of care, and the many long waits in between specialist appointments. Hang in there, and try to make sure you get lots of sleep and meditation if possible. (Stress aggravates autoimmune disorders immensely.) In the mean time, it may also help to steer clear of all acidic foods (tomato, citrus), caffeine, and aspartame. Those substances will aggravate the bladder/urethra area. I hope you feel better soon!

[Jillymo]

Oh Emma how many time have i felt like you, endless appointments without answer's.

To have such little energy to have to run a home & manage two small children is a tall order, you must be exhausted with it all.

Unless your a suffer other's just dont seem to understand, they seem to dismiss our frustration.

St Thomas has some very knowledgeable consultants & professors, i do hope you get some help soon the water work problem must be agony for you.

Be very careful if your put on hydroxychloroquine it is very acid & can upset the bowel, as i found out.........push for plaquenile if you can i'm told it is not so harsh.

Blood thinners are the same they can be very hash on the system, with your problems down below you dont wont to aggravate it further.

I also have raised inflammation going on in my blood result's but nobody can put a finger to what is going on, as you rightly say you can wait months in between appointments.

Is there anyone who could could help you over this crisis with the children or home ? sometimes we have no choice but to lean on other's.

Let us know how you get on. Jillymo X

[emmaj in reply to Jillymo]

Thank you both for your time, i see st t's again 12th sept,so im going to be asking for heparin instead of warfarin, and ill ask for plaquenil, thanks for the advice. Im also going to ask for an anti inflammatory as im only masking the pain with paracetamol instead of actually stopping the inflammation. Ive just received my letter from my consultant yesterday,a copy of the one hes sent to st t's after my follow up from the biopsy and its very non committal really - he says he thinks its just part of connective tissue disorder - so do i have that or not?? No one has said i do for definate its never been mentioned before. Yet again something is flaring but i bet my bottom dollar no one will ever commiit or be able to say whats gone on and treat it,therefore its just another thing i have to put up with and live with - and my fear is while its not treated then how can we say for definate were preventing anything else from being targeted or this get worse!! I will let you all know when ive been to st t's xx

[Lure2 in reply to emmaj]

I wish you good luck on September 12!

Kerstin in Stockholm

[Jillymo]

I had a job to find you again i'm sorry for the late reply.

You will need something like omeprazole or lansoprazole to protect your insides from the acid effect these medicines often have.

Now i know it is tempting when you feel so poorly to try & get the plaquenile in as fast as you can.......that's if you get it prescribed, that's a task in it's self.

Less is more to start off with ! You dont wont a reaction to it so even if you take a quarter of the tab to start with your getting it in your system........it can take up to 3mths to take effect.

If you manage to get it prescribed stick a post on here & ask the best way to start taking it Mary or APs will advise you, they know there stuff. Jillymo x

[emmaj in reply to Jillymo]

fab - i will thank you x

[Jillymo]

I hope the the bladder & ureter problems settle down for you soon it sounds awful Emma.

I'm having problems with blood thinners irritating the lining of my stomach & my bowel. I'm sore right through my system from taking the clopidogrel & hydroxychloroquine i dont wont you to suffer the same you have enough to cope with.

I have gone from asprin to now clopidogrel but wondering if i should ask for fragmin, the hydroxy has just been changed to plaquenil.

I havn't got them as yet so cant say how i'm getting on with them, i shall pick the prescription up tomorrow.

Take things slowly youv'e been poorly so you need plenty of recovery time. Jillymo x

[emmaj in reply to Jillymo]

Oh no i hope things settle soon for you too - i have ibs so i know how painful it can all be. I m going to pen a letter to dr khashmata I think befpre my appt so i dont forget anything - ive had some good advice and forewarnings from you guys so im glad i wrote on here,and ill let you know how i get on xx