Has anyone experienced any auto-immune disorders after long-term dialysis?

Hi everyone, I'm new to this group and have been doing this a long time- 25 years in fact. I keep very well generally and work etc. However I'm currently experiencing a terrible rash and itching which is not phosphate etc. related, and all standard renal blood results are good. I've had a full anti-immune screen done and await the results anxiously.... does anyone know anything about this type of thing? I consider myself quite knowledgeable in the dialysis field, but this has thrown me a little.

Thank you :)

11 Replies

  • Hi again Nicolala

    I had the same problem when I was on PD, very dry skin and intense itching and I used to wake up to find I had scratched my legs until they had bled while I was asleep. My bloods were also fine and then I saw a post about using Nutregena Norwegian formula cream and it worked for me. It was amazing how much just sank into my skin and disappeared every time I applied it.

    My theory is as dialysis removes water from you blood your body can't supply enough to your skin so it goes dry and itchy and prone to rashes. But that's purely subjective.

  • Thanks Fred. I do have dry skin problems and have to moisturise regularly. This is a bit different to anything I've had before. I'm on steroids for it since Saturday and drs have taken an auto-immune blood screen. I will definitely try the cream you suggest. I've used nutrogena products before and they are good ☺thanks again x

  • I'm not sure about autoimmune., although with my last viral infection which caused my white cell count to drop right down, the haematologist reckoned my bone marrow was 'slow to respond' due to many past operations and suchlike.

    As for dry skin, heamo for the past 10 years almost, I try to avoid processed products (both in food) and on the skin, using a good brand such as Weleda (I used their birch scrub this morning and my skin is lovely and smooth)

    Also discovered Bodhi and Birch..

    Given the heat we're having in the UK it might bring some symptoms out that wouldn't normally occur.

    Hope those results find an answer..

  • Hi Nicolala.

    Suggestion only -

    Ask for a full print out of all your bloods done and their ranges too and pop them up on the Thyroid Uk forum site (on here, Health Unlocked) where many people let down by their Doctors do this daily. Members will help you forward, too many auto immune patients are being over looked/missed by their Doctors and told their bloods are 'normal' and that nothing is wrong with them, ??? yet they still have presenting auto immune symptoms and gut issues.

    My Mum is a Kidney dialysis patient, she has Hypothyroidism (Low thyroid) she was lucky to be diagnosed, but has never been given enough medication to help her recover, (now sorted ourselves and Mum is doing amazing) I too have Low thyroid, again under medicated, but luckily have learn't all about it through Thyroid UK and have been helped to understand how to get myself well again.

    Also vitamin deficiencys and low iron problems can cause life threatening symptoms, but not always screened for and Doctors will rarely give out advice on vitamins and nutrition to heal yourself, but again we get to learn about it all.

    Hopefully you are not on a statin ? and do let a Doctor push you onto depression pills as many of us are, prescribed depression pills are not good for auto immune diseases.

  • Hi Coast walker

    Thank you so much for your reply. The things you mention, I have so many experiences of. If it doesn't present in renal bloods, they wash their hands and leave you to it.

    I take very little medication generally- I'm convinced that's why I have done so well on dialysis for so long. I have refused statins.

    I am still waiting for immunology results. If they show nothing, back to my GP, who is very supportive luckily. I will certainly get a copy of my blood results and start doing my own investigation.

    I hope your mum continues to be well. Thank you again.

  • Mum is fine 'now' thanks :)

    Good you have had the experiences so know what I am waffling on about

    ;) :)

    Yes you are right about renal bloods, :) though Mum is trained up to ask for a printout of those too, for me to look at, always good to compare each month, Mum has many many H and L's

    (I expect you know we all have a right to our own blood results, many don't, I didn't.)

    Do remember your printout of bloods, I am a good one at telling others, then go and forget to ask at the end of my appointment.

  • Do uou have access to renal patient view? It's an online system where all your medical history and blood results can be found. If your mum's hospital use this system, you will be able to access current and previous blood results and other information. You need a secure login, which the renal unitl would set up.

  • Thanks for that information Nicolala, might look into that as Mum is 'on line. '

  • You can find it on Google search and have a look.

  • Thanks Nicolala.

  • I was on dialysis for three years and developed a very bad rash once I got to the unit and started dialysising. It turned out I was allergic to the cleaning fluid they used to disinfect the bed. I ended up bringing in my own sheet and covering the bed which helped a lot.

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