Help Understanding Rheumy's Letter and Kidney Question

[Leenie0811]

Evening All,

I was wondering if someone would be able to help me understand the following points of the letter my Rheumatologist has sent to my GP. The letter says its a possible connective tissue disorder/lupus and I have started taking Hydroxychloroquine - I've been on the medication for two months now and am due to go back to my specialist in March.

The letter states my ANA was positive but double stranded DNA and ENA were both negative - what are these tests? Do they further indicate lupus or do they have to be positive for a formal diagnosis?

I forgot to mention about my kidney pain I have been having when I was at the original appointment I have been prescribed antibiotics for urine infections 4 times in 2019 as I went to my GP with pain (not when urinating but around the kidney area) they tested my urine and it had a large count of white plus red blood cells. The samples were sent each time to the lab but it comes back as no infection - is this worth telling the specialist next time I go? Sometimes when I urinate I notice blood too (its not a period either) I have been worried about for a while now but I am unsure if I should go to my GP or wait until I next see the Rheumatologist.

If anyone could help me out that would be great!

Thank you,

Leenie x

[Buffy14]

Hi leenie , the double stranded DNA test proves you have lupus if it is positive , it is only there in lupus no other connective tissue diseases . You must definitely tell your rheumatologist about the idney pain as lupus can attack the kidney's , good luck with your appointment

[Leenie0811 in reply to Buffy14]

Thanks for the explanation, can you still have lupus if the test is negative? My ANA has gone down over the last 6 months but they are still keeping an eye on it. I will write down my kidney stuff for next time I go I haven’t got an appointment but he said 4 months time from November so I’ll be expecting a letter sometime this month...

Leenie x

[Buffy14 in reply to Leenie0811]

There is seronegative where it doesn't show in the blood but you can have typical lupus symptoms , don't know much about it maybe you could ask others x

[Geordie-Y]

Lennie,

I had almost the identical symptoms to yourself just over a year ago and after about six weeks of suffering a constant pain in my lower back, I was finally diagnosed with Renal Tubular Acidosis. RTA is caused by the kidneys inability to secrete acid through the urinary tract due in part to a blocked postule. Basically the postule becomes blocked with calcium which stops your kidneys secreting the acid to your bladder. According to my consultant it is noticeable by the high amount of calcium in your blood.so it might be an idea to suggest this to your GP. It may not be the same thing but your symptoms sound almost identical to mine. I had a procedure to unblock the postule and haven’t had any further episodes of the pain or urinary infections since.

Hope this helps.

[Leenie0811 in reply to Geordie-Y]

Thank you so much for that information, do you think it is worth waiting until I see the rheumatologist or just going to my GP?

Leenie x

[Geordie-Y in reply to Leenie0811]

I would make an appointment with your GP as he should be able to indentify if there is too much calcium in your blood.

[Leenie0811 in reply to Geordie-Y]

Thank you, I will call them and schedule an appointment x

[Hidden]

Hi Leenie, best getting kidneys checked out. I got severe back pain about 20 months ago, pain like I'd never experienced in my life and fast forward I've just started Peritoneal dialysis. Lupus affected my kidneys the 1st time and I thought it would be the same outcome again, how wrong i was. Take no chances and get the kidneys checked. Don't mean to worry you but speaking from experience I wouldn't want anyone else to go through want I am. Good luck.

[Leenie0811 in reply to Hidden]

Thank you Kitman1 I will get onto them, would you go to the GP or try call the rheumatologist? I’m kinda worried now, it doesn’t hurt constantly but I get periods of pain then sometimes it’s like I have a urine infection and for a day or two I’m peeing multiple times an hour but nothing is coming out but the urge to go is there. I’ve only had antibiotics 4 times but this sensation and pain goes away after a couple of days, think the longest it’s lasted is a week.

Leenie x

[Hidden in reply to Leenie0811]

Hi Leenie,

I'd probably mention it to both of them as the GP can refer you to the renal department if there's any problems, likewise so could the rheumatologist I guess. I've always been lucky in the side I've seen a nephrologist as they have been brilliant with me. Let me know how you get on and if you need to chat or know more I will try my best to help you.

[Leenie0811 in reply to Hidden]

Thanks I will make a telephone appointment with my GP to discuss the issues and pray they can see me! I will keep in touch to let you know how I get on x

[Northernd]

I'd go your G.P and push for kidney testing for lupus nephritis, I had it for 6 months with violent vomiting episodes as it got worse 3 ambulances called, I had no idea it was kidneys then my face and feet swelled up so my husband rushed an appointment with my rheumatologist the next day to find out i had stage 4 lupus nephritis that they didn't pick up on yet all the signs were there, if it had been left another week things could have been a lot worse.

If caught earlier I wouldn't have needed chemotherapy, I could have just taken mycophenolate tablets.

Please get this looked at it can be life changing if not diagnosed early x

[Leenie0811 in reply to Northernd]

Wow thank you so much for your information, I'm so sorry you have had to go through chemo! I haven't had any vomiting but the pain does sometimes make me feel sick but if anything it interferes with urination or bowel movements. I know it is so much different to my endometriosis pain - we all know our own bodies don't we? x

[Northernd in reply to Leenie0811]

Yes we do x

[Northernd]

Kitman1 was one.of the great people in here that reassured me and answered my worries while I was in hospital getting treated for it, if you have any concerns just ask theres loads of people going through or been through what your going through, you're not alone 🙏🤝❤

[Leenie0811 in reply to Northernd]

Thank you so much, I will keep posting on here with updates. I didn't realise how serious the kidneys were in all this x

[Northernd in reply to Leenie0811]

Neither did I. X

[Roarah]

You should mention the blood to your gp. A lot of non lupus issues can also effect kidneys a urologist might also be recommented. Hope you feel well soon.

[Leenie0811 in reply to Roarah]

Thank you I have an appointment with my GP tomorrow so hopefully I can update x

[Paul_Howard Partner LUPUS UK]

Hi Leenie0811 ,

Our factsheet has some information about these different blood tests if you still want to learn more about them - lupusuk.org.uk/wp-content/u...

[Leenie0811 in reply to Paul_Howard]

Thank you so much paul x

[miccika1]

For blood in urine go to nephrologist. Positive ANA means you have autoantibodies but doesn't say which ones. That's why they need to do a FULL panel for you. Ask your rheumatologist to do the full pannel not just the two that came negative. This will show which exactly autoantibody is positive for you and what autoimmune disease you have. There are many. For example anti RNP will have you in MCTD bucket, etc...you can search online for detailed explanation for each

[Leenie0811 in reply to miccika1]

thank you for the information miccika1, they took blood from me before I left my last appointment so hopefully they will do the full panel and I can find out when I go back. I am still waiting on a letter from the specialist but he wanted to see me in 4 months time so it should be anytime now x

[Northernd]

That was also a key indicator for me frothy urine

[Northernd]

I'm also down to 3 tablets per day mmf and 5 mg prednisolone per day with regular kidney function tests now every 6 weeks, was every other week but function has been steady for past 3 months 🙏 so appointments fewer 😅 thank you Sue and you too x 💕🙏👍

[Leenie0811]

Thank you so much for the information I've been keeping an eye on my urine and sometimes it can be cloudy, I have an appointment with my GP tomorrow (finally) so I am going to get all the information down about the problem.

Its like I have a UTI and then when they send the sample off to the labs it comes back no infection! The GP says the dipstick test shows white and red blood cells - its like a never ending circle but I can't cope with the pain anymore. Fingers crossed tomorrow it all works out! Thanks again, Leenie x