The kidney connection: Hi everybody Although I have... - PMRGCAuk

PMRGCAuk
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The kidney connection

Hi everybody

Although I have not been heard from lately, I always follow what is going on in the GCA/PMR world. I thought I would share my latest happenings to see if anyone else has the same problem. Although I have had GCA?PMR for 3.5 years and have often wondered why unlike most people I attend the Nephrology clinic. Last week whilst waiting for my turn to see the consultant I was approached by a nurse who took me into a small room and asked if I would consent to taking part in research into people with rare kidney illness as I was the only one in the area with this illness. Of course I agreed but was amazed that no person had ever told me I had rare kidney illness. I have asked many doctors but to no avail. I have of course since found out that GCA can affect the kidneys and this is why I take Mycrophenolate every day. To make things worse, the clinic could not find my file so after two hours of waiting I was actually told this and then told the doctor had been called away. Thus I could not ask for an explanation. I have another appointment for the 21st January when I will.

Has anybody out there been told that their kidneys are affected by GCA and if so what does this mean. As I am stuck at 7mg of Prednisolone, I think I will stay there until I find out more.

Thanks to everybody out there and the funny letters. Please keep them up.

15 Replies
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That is truly shocking Cobnut! The answer is no no no - never. Please tell us more when you know more. Also hello, long time no see! 👋

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Thanks for your reply. I will definitely keep you all informed when I know more.

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What were your symptoms and what tests did they do? It is very rare - but they must have had a reason for suspecting it in the first place.

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I had a very severe headache, jaw problems and double vision in my left eye. I was kept in hospital for three days having frequent blood tests and a biopsy which clearly showed GCA. I do not recall having any other problems other than these. Whilst in the medium dependency ward, the doctors often had whispered discussions around me but not to me. Very strange.

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There must have been SOMETHING that said "renal" - must have been confirmed GCA and dodgy renal panels... Do hope you can find out! But how annoying YOU have never been told. I won't have whispered conversations about me - I wish to be included if you are going to be that close!!!

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How dare they!!’ Outraged on your behalf. You are the patient. You are the most important person. Who the hell do they think they are. you must be brought up to speed IMMEDIATELY XXXXX

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It does annoy me when doctors treat their patients as if they're not intelligent adults. It shows such a lack of respect. Of course, you should have been told that you had another condition - it's your body, and they wouldn't have jobs if we didn't become ill!

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I do so agree. I am not a stupid person and it's always better to know what's what. Apart from anything else I need to know what to look out for and if I'm doing anything wrong. It also explains why two different GPs stopped me taking Metformin due to my kidneys.

I shall be ready with a list of questions on the 21st if, of course, they have found my file!

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Don't forget you have the right to complain to the hospital PALS. A friend of mine had a similar experience when she wasn't kept properly informed and PALS took her seriously and helped her immensely.

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It’s shocking.

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Yes I know about PALS and how they help so many people and I will definitely get in touch with them if I do not get satisfactory answers to my questions. I think the problem started when I was discharged from hospital and not told by anyone about this added problem with kidneys. The consultant I was sent to probably thought I had been. However I think the illness and the medication they give you for it is not properly explained. I obtained most of my information from the internet which was wrong. Even when I went to see a GP he was not very forthcoming and seemed very unconcerned about the effect steroids have on your everyday life. When I mentioned the extreme fatigue, he just said isn't that the nature of the illness without adding that high doses of steroids make it worse. As for reducing Prednisolone, well I don't think you get a great deal of support from anyone except this group of knowledgeable people. So we are on our own and just go from day to day thinking either well this is a good day or not. Sometimes you feel positive and have more energy and then there are days when you drop off to sleep if you sit down for too long. Stress plays a big part. If you or your family have problems, they seem worse and keep you awake. Even having a fun packed day tires you out. But keep smiling and buy a bunch of daffodils to remind you that spring is coming and may, just may bring more sunshine. We need our vitamin D.

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Ref: 'I think the illness and the medication they give you for it is not properly explained'. and 'when I went to see a GP he was not very forthcoming and seemed very unconcerned about the effect steroids have on your everyday life. When I mentioned the extreme fatigue, he just said isn't that the nature of the illness without adding that high doses of steroids make it worse. As for reducing Prednisolone, well I don't think you get a great deal of support from anyone except this group of knowledgeable people. So we are on our own . . . '

This rings so many bells, Cobnut. It tallies with what I've experienced. I guess the reason they don't say much about it is because they don't know much . But maybe they don't care much, either - that's how it seems. I had no idea what to expect or what to prepare for, and if it wasn't for this forum and Kate Gilbert's book, I still wouldn't. It's disconcerting if you expect that the NHS is actually going to look after you. In my experience too, you are pretty much left to sink or swim, with very little opportunity for effective communication or support.

Thank goodness we found this forum.

All the best.

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Marijo I agree. I am furious !!!!

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That’s awful Cobnut!! You have a right to know what is happening in your body !! Get your list of questions ready!!

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Not good - let us know how you get on Cobnut. Give them a piece of your mind.

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