word of warning

hi everyone its very rare i do a post and besides i have been feeling very ill recently but i wanted to share my story i have rheumatoid arthritis for a number of years and up until approx a year ago had it pretty much controlled then it came back with a venguence anyway my meds were upped and cimzia added to the mix which failed in the mean time i was back and forth to gp and rheumy feeling crap with a raised inflammation level that refused to go down so rituximab was the next med to try had my first infusion not to bad besides a nagging pain down my left side went for second and pain in my side was horrendous got admitted to hospital to be told i had kidney stone so discharged with codeine and told it would pass ok so inflammation levels still not gone gone down so get called in to emergency appointment with specialist who admitted me after having my blood taken every day to try and find out what was going on a ct scan was booked and it showed i had a large tumour on my left kidney which is advanced and they have to see if i am fit enough to have surgery or i have 6 months all i would like to say is please please dont let docs fob you off and say its arthritis i thought it was my rheumatologist was stunned

15 Replies

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  • I'm so so sorry to hear this. My brother had a cancerous kidney removed about 20 yrs ago & has never looked back. I so hope that'll be the same for you.

    Thank you for telling us. & you are so right, it seems when you have RD it gets blamed for everything, by me usually. We shouldn't assume.

    Take care x

  • I hope you are fit enough for treatment soon and thanks for the reminder of the importance of keeping an eye on other things other than my RA.

    All the best

    Ali

  • I'd to read this twice, I couldn't believe what I was reading. I'm so sorry to hear you've been so poorly but it begs the question did you have any imaging done when you were first admitted & they told you it was a kidney stone? I hope you will be well enough for the op, I believe many people carry on relatively normal lives with the one kidney & really hope this is the case for you.

    I wish you all the best & thank you, it will serve as a reminder to us not to put everything down to RD & that it's fine to report anything new. x

  • What a horrible shock for you. And so frustrating if you'd been complaining about pain and the docs not listening properly. I hope that you get fit enough for the op very soon and things pick up well. thanks for telling us this, it's helpful to be reminded.

  • Sorry for your news, generally living with one kidney is possible as many people give kidneys to family member on a regular basis.

    Personally I would have thought if there was doubts a scan earlier along the line would have been performed.

    I hope your operation is done sooner rather than later. Also all goes well

    Good luck

    BOB

  • What a terrible time you are having. Its true that RA can mask so many symptoms and I would always advise anyone to listen to their own body. If in doubt get a second opinion.

    I truly hope that you get the care and expertise you deserve in getting well. Please let us know how you are doing and good luck x

  • Sorry to hear your news and I wish you all the best for a good and speedy recovery. We all know our own bodies and need to act when our instinct tells us something isn't right, even if it turns out we were wrong, better to get advice than not. Best wishes. X

  • First of all,I'm shocked at the way you have been treated.........or rather not treated. Heads should roll.

    Secondly, my daughter was diagnosed with kidney cancer 4 years ago, She had it removed, admittedly a big operation, but she didn't need chemo or radiotherapy, and so far

    r her yearly scans have been clear.She was lucky, it was discovered while being xrayed for something else. My youngest daughter was born with only one, and manages fine.

    This must have been such a shock for you, and you have a fight on your hands to get well enough for the operation. I wish you the best of luck, and will be thinking of you. I hope you have good family and friends to support you through such difficult time.Best wishes M xx

  • Yes, I read it too! It is a sad thing but it doesn't pay to trust the professionals fully and to trust your instinct. All of my bloods are abnormal but I am still fobbed off that it is the meds, yet I didn't take them for a while so how can it be? I have had terrible kidney problems and been admitted as emergencies each time but still it is 'normal'. I am sad that you have had to go through what you are now. Big hug on it's way.

  • thankyou all for your replys what angers me is rheumatoid seems to be blamed for every pain i have the same answer at the the gp make an appointment with rhematology its very frustrating when they took me in overnight they only did an xray and said stones but deep inside i knew it was more than that and that was the first ever ct scan i have had when rheumatologist admitted me i think all the doctors were shocked i know i have a massive fight on my hands i will keepyou all posted how it goes xx

  • I really do feel for you, but try and hope that you can have the op and all will be fine! My uncle had a kidney removed when he was in his 60s and lived until his 90s so there is always hope. I gave up trusting doctors years ago hence the reason I joined here. They let my husband down he passed away last year with cancer and I have had to fight to get listened to about myself. Maybe it's a way of not having too many patients to see if they get rid of a few :-)

  • Hi Meandb, I am so sorry to learn of your prognosis! I do hope you will be fit enough for surgery and all will be well.

    I have to say, I have no idea how we stop the 'docs fobbing us off' as my mother went through a similar process. She has had RD for 29 years or so and over more than the last five years she had been complaining about being unwell, lower back pain, high calcium levels etc and the doctors kept telling her it was due to her RD and hyperthyroidism. She knew there was something more sinister, I felt there was something more sinister when about two and half/three years ago she started losing weight as well. We tried everything, knocking on GP's door, various scans, private consultations and nothing, everyone we turned to we got told all Mum's symptoms were RD related - we just didn't know who to turn to until one day an astute Endocrinologist referred Mum to a Haematology consultant. This was 13 months ago and although the haematologist said at the time she didn't think there was anything sinister, she did agree for Mum to have a test for myeloma (to put our minds at rest). Lo and behold, Mum was diagnosed with Multiple Myeloma but as she was already too frail by then she was offered low dose chemotherapy for 4 months. Since then, they (and Mum) have agreed that there is no more they can offer Mum.

    Looking back at it all, I began to realise there was absolutely no medic looking at Mum as a whole, each discipline was taking care of their own speciality so the rheumy only looked at Mum's RD symptoms and the endocrinologist just from the endocrine point of view. It was not until we saw a new Endocrinologist who could see we were 'struggling' and got involved in Mum's overall care as far as she could.

    I do understand that RD and other manifestations mask and mimic symptoms of other diseases and it is difficult for the medics to pick up on everything but how does one cut through all this....

    Please take care

    Usha x

  • I am so sorry. I start rituximab on Wednesday and am nervous. However he did loads of bloods and abdominal scan that were negative a few weeks ago so fingers crossed. I hope you keep week and you get your op x

  • Hello Meandb, sorry to hear about your situation.

    I have a good news story which started similarly to yours.....

    Was having female trouble a few years ago (damn menopause) and my gp was very thorough and had my 'plumbing' scanned lol. (She didn't automatically put anaemia down to R.A. and I would be dead by now had she done so).

    Whilst there they found, completely by accident, a massive tumour bubbling over on my left kidney.

    Because it was so big they assumed it had been there a long time and was likely benign. However that wasn't the case. I was operated on successfully and they cut the overflowing tumour down into a V shape in the kidney to save as much as possible and

    that allowed them to fold those pieces down inwards and make a smaller kidney.

    (I think it's about two-thirds what it was). In the old days they whipped the whole thing

    out to be on the safe side. Thank goodness they have so much skill nowadays.

    Long story short, it is seven years in 2 months and despite incredible amount of stress

    the Cancer or it re-occurring has been the least of my problems lol.

    I am optimistic this will be the case for you. I have a good feeling.

    (My own life's a trainwreck lol but I am usually right about thoughts on others).

    I will think and say a prayer for good things for you. Smiley-face.

  • Heavens you poor thing. ♡

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