Well I've spent 12 days as a guest of the local major hospital and all from a routine blood test by RA nurse. Thank her every day that she did as my kidney function was just 16%, an urgent get here now phone call and last week transferred to County Renal unit as local hospital despite many many tests are not experts and passing to the hospital which is. Acute Kidney Injury which might I stress might be linked to Ompeprazole is best hunch so far and to morrow is a biopsy which again might give a clearer picture of the damage. My point is that I put everything down to Rhumatoid and was feeling great but in reality this was a silent condition. The Lefludamide has no known link to kidney truama they said and so hopefully in due course it'll be restarted. But it is so important to get those blood tests done and not to just assume that all the ills are done to RA and those DMARDS.
I'd also say that I moaned so much about bruises from blood tests, but I won't anymore. lol
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medway-lady
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Gosh what a nightmare for you. I hope they get you all sorted and you can start back in the LEF as I know it helps you a lot. Thinking of you and keep us posted. Sarah xx
Blimey! Amd it happened suddenly, so no early warning that your kidney function was dropping? Eek...scary. I really hope damage is minimal and your kidneys perk back up asap.
I'm in the process of seeing about having my bloods checked on a regular basis because I'm on baricitinib. For some unknown reason this doesn't appear to happen by default when taking this particular med despite liver issues being a common side effect(?) Your post has certainly highlighted the importance of regular blood tests and has prompted me to get a move on chasing it up.
My rheumie nurse gave me two blood request forms, I just photocopied them, & get relevant bloods done before appointments ....saves time & catches any problems.
Our local hospital won't do GP ones so it was great the RA gave me a stack of signed requests in May so in July 89 % working by 3 November 12%. Just goes to show how quick these things happen. Worth then telling people as blood tests just get taken for granted and I felt fine and thought tiredness was a bug. I wish it had been not the past 3 weeks of awful malaise. lol x
I do hope the hospital get you successfully sorted out ...I agree we should make sure our blood tests get looked at, & not just tick boxed as OK.
I saw my Rheumy nurse prior to infusion this week & told her I was having my bloods done next week.....she said why not have it today as you are here so I did. But I thought. (knew but didn't want to argue) it was too early so I called the unit & sure enough, I have to go back next week for another test.
They have no idea yet, as its not getting better or worse and so have to wait on a proper diagnosis. Just so tired can't do anything, as the brain says make a cup of tea but body can't get to the kitchen. The NHS have been fantastic can't fault care or speed of treatment. Unbelievable speed and real care at our local and much maligned hospital. I wonder how our doctors and nurses cope with the lack of sleep and such long hours too.
Oh goodness Medway-lady what a shock for you, but so glad a quick thinking nurse acted on it. I was reading post on another site about how lax they can be with bloods out of range, especially if you are under different consultants. Wishing you the best possible outcome. X
O my goodness, that’s awful. Really hope you’re on the up now; thanks for blood test reminder x
Hope you get it sorted out asap, and you can get back on track. Good to remind us that our blood tests are not just a tick box exercise. Take care . M x
Hi just read your post and I do wish you well and hope you get it all sorted out I must say I don't always keep to the blood tests but I think I will now
So very sorry to hear this. Shat a shock fir you. I have also had a few moments saying thanks for RA..... not many! But I do say what wonderful people I have known and count as good friends in hospitals and patients that I would never have had the privilege of knowing. Please take care and i hope they get on top of this very quickly to get get on the straight again. X
Sorry to hear this ML. I hope things improve soon. It'll mean no more of the 'prazole family for you. My h has to have ranitidine & Gaviscon now, don't work as well but it's better than risking more damage to his kidneys. He needed magnesium & iron transfusions. It's the fact it's silent that's worrisome. A good reminder how important our routine blood tests are, especially for us. Wishing you well.
I do find it a bit strange that new research on PPI and silent renal pathology build up for longterm users, is not taken seriously by doctors who keep perscribing them for longterm constant use. Patients should be vigilant and ask there doctors about these new findings.
Seen the Renal Consultant today it is the Omeprazole. Silent action in the kidneys like an allergy builds up over time. Proves the point how important blood tests are but this is very, very rare. It is vital to get the blood tests done on a regular basis as this actually happened over a 2 month period ok in mid July at 89% by mid Oct 12%. Treatment is time really time at the moment ! x
Ouch, that's a shocker. Sorry that you were the one in the million this happened to. And yes, I will be extra careful in checking my kidney function tests from now on.
Thank you and so vital to remember its very, very rare. My consultant said only 2nd person he's seen with this reaction. My point really is as you know all ills can be put down to strong RA medications not the minor PPI's ! Very glad that it is a message to be aware and keep those blood tests up to date. xx
I'm so sorry this has happened to you, but glad the issue has been caught in time. Thank you for sharing and hopefully making us alla l ittle more vigilant.
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