Vasculitis UK
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More advice needed on ongoing pain

So I have now been dx with a bladder infection that has tracked to my right kidney. After 6 days I had no relief in the pain in my kidney area. So went back to the hospital. They did a load of tests and ruled out kidneys stones and a heart attack. They found blood in my urine and I still had the infection so they changed my antibiotics. They also found I had high potassium. A week later the pain is worse than ever so I went back to the clinic. Turns out I was dehydrated and high blood pressure. Infection and blood still there but the doctor thinks the pain could be gall bladder. The pain is sharp, starts from front just under rib cage and goes to back just under right shoulder blade then up. I now have a painful rib cage all right sided, it feels like one big bruise. They are ringing the rheumatologist for an urgent appointment tomorrow, they say if it is not gal bladder it is probably my vasculitis. I have unspecified vasculitis, GCA was the initial dx but I have small vessel involvement too.

I am in so much pain and no clue what is going on, hurts to move to much and can't lie flat. Any ideas?

9 Replies

Sounds ghastly, Cath. What an experience, you poor thing. I do hope you get some definite and accurate diagnosiis soon, and then effective treatment that brings permanent relief from the pain and worry.

Just wanted to share with you my experience of cholecystitis, gall bladder inflammation so you can compare. Pain was just how you describe it (extreme) and exactly where you have it but I was also throwing up, nasty brown stuff every half hour or so. Have you had this? I don't know whether everyone who has gall bladder inflammation gets the vomiting but it is indicative.

However, if it is not your gallbladder, then it is good the rheumatologist is looking at you, too. How do they explain the blood in the urine? Are your kidneys ok? Have blood tests been taken to look at creatinine levels to assess kidney function?

Wish I could help more. Let us know how it goes.



Thanks Ayla.

I have had lots of blood work done, kidneys working ok, they think maybe I have had a kidney bleed and that is why they're is blood. So having a detailed kidney scan to show the blood vessels better. Having the ultra sound on gallbladder on Tomorrow, (Monday). I have had some nausea but no vomiting. I have just had to get up, as soon as I lie down it sets off the pain!

This is my second try at replying so sorry if you get it twice.


Please excuse what might seem a silly question, but are you diabetic?



No i am not diabetic although i was at my GP this morning and he said my levels in my last blood test were high. Very confusing


Hi Richard

I am diabetic.

The reason I asked is that I had the same symptoms you described and was diagnosed with Diabetic neuropathy, this is damage to nerves in the body that occurs due to high blood sugar levels from diabetes.



Hi, not that I know of but I am on pred which I understand can cause it, I will get this checked out thanks.


Let us know how the tests go, Cath and I hope today sees an improvement.



Ultra sound was normal. The doctor rang the rhumy while I was there, she does nothing think it is linked! But she will see me as an urgent. Turns out though she knows about vasculitis but not a specialist in it. I'll keep an open mind.


Hi Cath, so sorry to hear about your current problems and the pain.

Can you send me a private message with answers to these questions:

1) Which hospital do you go to?

2) Your age?

3) When you were told you had GCA?

3) When the current problems started?

That should do for now.

All the best - John


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