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.
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Cobnut
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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.
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!!!
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
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!
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!
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.
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.
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.
A few years ago I had the equivalent of a private medical MOT and was astonished to be told I had kidney disease ! I went to my doctor with the findings and she said she knew😱 but wouldn’t have told me until I presented with any problems!
Hello Marijo1951Well no doubt you will now find my post written three years ago when I complained that I too had discovered that my kidneys had been affected by GCA. Nothing has changed since then. I still take a low dose of Microphenolate which is usually prescribed to transplant patients. This drug is an immune suppressant as is Prednisolone so its a double whammy. I have not seen a consultant for nearly a year due to Covid but a telephone consultation in March resulted in him telling me that the latest blood test showed decreased kidney function. He told me to get another test done but neglected to send the relevant blood form. After three phone calls and a complaint made this arrived and the test proved normal. Our GPS seem to have given up seeing people and booking a blood test is now almost impossible here in Shropshire. I ask for a form and explain why I should have a test every three months and after about a month I get one. Thank goodness for the NHS app as I can now check my results. It's six years since I was diagnosed and I'm still on 6mg of pred. The fatigue is no better and any stress makes it worse. A recent cataract operation made my inflammation readings higher especially as without the other eye being done I can't see properly having one long sighted eye and one shirt. However I'm rapidly approaching 80 years old and know the difference between me at 73 and now. I try to ignor my kidneys etc and accept the aches and pains etc. I have a patient husband and helpful family so I'm lucky. Try not to worry about your kidneys as most people's are affected as they age and a blood test will flag up any problem.
Hello Cobnut. Thank you for the update. I was first diagnosed with GCA and PMR on 31st July 2017, so I've had four years of it. I started at 60 mg of pred per day and I'm now down to 4.5 mg, plus 15 mg per week of methotrexate, so maybe I'm progressing a bit faster than you, but I still find it a slog. I'm a bit younger than you, 70 last March.
I certainly empathise with your remark 'The fatigue is no better and any stress makes it worse'. Chronic fatigue is now an everyday part of my life. I feel I'll never get rid of it. I went to the local cinema today (excellent film about asylum seekers called 'Limbo'), got home just after 3 p.m. and had to lie down for 90 minutes. My son and his family visited on Saturday - first time I'd seen them since Christmas 2019 - and it was a marvellous day. But I more or less lost Sunday, spending most of it lying on the sofa to recover, and that was from happy stress!
I used PALS for the first time earlier this year. I had a telephone appointment with my rheumatologist, but she didn't call. I tried contacting the rheumatology department, and left several voicemails asking for a new appointment. I eventually complained to PALS, emailing them on a Sunday. They were in touch the next morning and the rheumatologist rang me in the afternoon. So I now know from personal experience that they are well worth approaching.
I got cataracts quite young and had both mine done about 10 years before GCA/PMR with amazing improvements in my eyesight. I hope you have your second operation soon, as it will make all the difference to you.
I've had a number of side effects from pred, but so far my kidneys seem unaffected. I'll bear the possibility in mind however.
I'm glad you're lucky enough to have a good husband. I often feel deprived, living alone and would like a companion to turn to. At the same time I know from experience that it's better to live alone than in an unhappy partnership.
I agree. Sometimes you feel as if you are shouting in a wilderness but then I remember all the other poor souls out there waiting for NHS help. My other cataract is held up because when you take Prednisolone only a hospital can do it and not one of the private clinics doing NHS work. I suppose if we were taken really poorly we would soon get help. I think it's just having a GP to discuss flare ups etc with as when I feel in need of an increase I am restricted as to how many Pred tablets I can order so have no extra. These are trying times so it must get better soon.
I was in hospital a few months ago for a hip replacement and I fainted three times. I managed to dislocate my new hip and got a very nasty gash in my leg. They seemed to latch on it must be something wrong with my heart and since then I have had numerous tests most of which were a waste of time and I got to the point I was not interested in being tested any more!
These are trying times. I too have had tests when nothing came of them. However they are only in our best interest and I suppose you can rest assured that your heart is fine. My hips are dodgy so if I ever get them done I will try not to faint!
It was quite exciting fainting, the emergency team had this cart with a load of people round it with something making a sound like an American police car!
that's a long while to wait ...can't they see you and explain more now? I also have GCA and PMR and can't stop peeing when the pred kicks in. Lasts for about 4-5hr period then goes more normal. They have taken another urine sample but first I have heard that GCA directly affects kidneys. Hope you get answers and hope I don't have yet more things to worry about. Does this condition ever let up on surprises?
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