Kidney failure

I have recently had to come off all my rheumatology meds because they have caused kidney failure.... Known as Acute Kidney Injury stage 3. I had a,long spell in hospital because of this and am now home but my kidney function is only at 40% and not improving. My meds also caused gastritis and an inflamed and ulcerated oesophagus despite taking 30 mg lansoprazole twice a day and me being very careful not to take them on an empty stomach. I was on weekly methotrexate injections and 800mg ibuprofen 3 times a day plus nefopam at night. I was only taking ibuprofen at this dose for a month before My kidney function took a nosedive, it all happened very quickly and was only picked up by a routine blood test

My rheumatologist is struggling to come up with a new treatment plan as all NSAIDs are not an option. I'm allergic to all opiates and opiate based meds, allergic to infliximab and intolerant of gabapentin, pregabalin, amitriptyline etc. I have inflammatory arthritis, osteoarthritis, ankylosing spondylitis and fibromyalgia.

Any ideas where I go from here? I'm aware a lot of the rheumatology meds can hit the kidneys quite hard and there is a,lot of debate between the gastroenterologist,rheumatologist and kidney specialist as to whether I can go back on methotrexate. Are biologics a possibility?

I'd be very grateful for any advice please, my joints are beginning to flare now I'm off the meds and im worried they will get really bad but I'm also very concerned about my poor kidney function. One consultant says one thing and the others say the opposite!

Comments

  • jamieA
    jamieA Member Posts: 659

    Hi @Moon

    I am really sorry to hear this and I hope things can improve for you.

    I was taken off NSAIDS and amitriptyline last June after suffering an incidence of atrial fibrillation and tachycardia. I was referred to a pain consultant who prescribed me capsaicin cream and Ralvo lidocaine patches which I felt worked for me. However it appears you can't get capsaicin cream in the UK at the moment so I use the Ralvo patches sparingly when I need them. I was put on the biosimilar of adalimumab Amgevita last July and I've found it to be a really significant help. I rarely have to resort to taking painkillers now.

    Hope things improve for you soon.

  • stickywicket
    stickywicket Member Posts: 27,686

    Hello again,

    I'm sorry you're having such a tough time but pleased the consultants are talking to each other. It's understandable that they'd disagree as they each have their own areas of expertise and concern but, hopefully, some agreement can be sorted.

    I'd definitely blame the NSAIDs. They did for my stomach many years ago - ulcers, erosion and hiatus hernia. I haven't missed them.

    I see from NHS that most people do make a full recovery from your type of kidney problem and I do hope you will be one, even if it takes some time. As for meds, I think there are still plenty of options. Have a look here at my favourite medical site.https://www.hopkinsarthritis.org/arthritis-info/rheumatoid-arthritis/ra-treatment/

    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • Moon
    Moon Member Posts: 28

    Thanks both for your replies, I have seen a pain specialist in the past but even they were struggling to come up with anything that I'm either not allergic to or won't affect my kidneys

    Sticky wicket. You kindly replied to me on a previous post where I said I was struggling to cope with my health issues plus my home situation, you'll be pleased to hear we have started the ball rolling for assisted living where our daughter is concerned. She is being very mature about it all and is actually quite excited. I'm so glad we have started this now especially after this latest health setback. Whilst it seems one step forward and two steps back I am confident all will turn out for the best eventually

  • Hi Moon,

    Thank you for posting on our on-line forum, I am really sorry to hear that your previous treatment has caused you so many issues and really hope it can be resolved soon.

    It is good to hear that you consultant is trying to come up with a treatment for you and it may be worth speaking to the consultant about the biological treatment, but because we are not medically trained, we cannot say if these drugs would also cause a problem for you.

    Biological therapies are a relatively new class of medicines. They stop or block cells in the immune system from triggering inflammation, and so target the underlying cause of diseases. They tend to work more quickly than conventional DMARDs. I have attached a link below on further information on one of the biological treatments available.

    Other alternative treatment for an inflammatory condition, which is a complementary treatment that scores highly for this condition is fish body oil, I have also attached a link below.

     


    Best wishes

    Chris

    Helpline Advisor

  • Hi Moon,

    Further information that may also help would be to possibly get a referral to a pain management programme and some informal peer support about what other people have been offered in the same situation whether this can be provided through your consultant, hope this also helps.

    Best wishes

    Chris

    Helpline Advisor

  • Moon
    Moon Member Posts: 28

    Thanks Chris for your reply

    I have seen the pain management team and met with others in a similar situation but because of my history of meds allergies they are at a loss as to what to recommend.

    I also have an Ileostomy which rather muddies the waters too! My latest kidney tests show they are only working at 40% and currently showing no signs of improvement which is a concern. What is so frustrating is the kidney specialist recommends certain things which may help the kidneys but the gastro docs disagree as they are bad for my gastritis and stoma. Add in the rheumatologist's thoughts and it throws yet another spanner in the works! It's so difficult trying to find a balance between all the different specialists as they are only expert in their particular field and not used to dealing with multiple major issues

    I will certainly look into the fish oils

  • Hi Moon,

    Once again I am so sorry you are going through this difficult process and hope in the future things will change for you, please keep us up to date to what is happening. Also if it would help to talk things through with an advisor please do call our Helpline on this free phone number (0800 5200 520) it can help to talk things through.

    Best wishes

    Chris

    Helpline Advisor

  • stickywicket
    stickywicket Member Posts: 27,686

    I'm pleased to hear things are moving re your daughter. It will take a bit of getting used to all round . But that's only to be expected and I'm sure it will be in her best interests.

    As for you, all I can think of is this https://www.uclahealth.org/allergy/drug-allergies . Probably easier to access in the USA and probably only available privately here but it might be worth asking your docs what they think.

    Good luck whatever you do - or don't do.

    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright