Sorry for the long post. For the last few months I haven't been good with this pain in my ear/eye/teeth that the neurologist put down to trigeminal neuralgia and gave me epilepsy tablets that have made me very tired and haven't really stopped the pain. About a month ago I had a really bad pain in my eye and ear that was so severe I thought damage had been done to my eye and also had a bad pain my my back. I managed to get into to see a doctor who gave me a week of antibiotics and steroids. I also had my 3 months blood test for rheumatoid. My gp sent a text to say I needed another test urgently as my kidney function had gone down to 55. Last Monday I managed to get to see my own gp as I have been feeling really poorly for the last month or so and she was so shocked to see how ill I was sent me straight to A & E. I spent 3 hours there and they made an appointment for me next day at ACU. I was there from 9am to 7pm. I saw a rheumatoid doctor who had me tested for giant cell arteritis as all the signs were showing for this and not trigeminal neuralgia , I went through the eye hospital for tests. When looking in my ear he said it was stipppled and had never seen anything like it and thinks I may have had a viral infection after telling him I had my second dose of shingles vaccine on 10th he put me on Aciclovir and a high dose of prednisilone. I am having a biopsy next Friday to test for giant cell arteritis as the scan doesn't always show this up. After looking at my blood test results there are alot of abnormal readings showing like platelets, creatine, triglycerides, albumin, globulin so not sure what is wrong with me. I am feeling a little better today and at least can eat without feeling sick so that's an improvement and think the steroids are easing my eye pain. I am hoping to get a correct diagnosis so can be treated properly and get better fingers crossed x
Not good: Sorry for the long post. For... - Lung Conditions C...
Not good
Oh dear Irene, that sounds really awful. I’m hoping you do get a proper diagnosis soon and will feel much better.
Sending lots of love and hugs to you. Take care dear friend. Xxxx❤️🤗
Gosh I do hope they get to the bottom of your pain and suffering Izb1, this must have been so hard to cope with along with the wrong diagnosis. I don't know what to say, it's too awful, I'm keeping everything crossed and thinking of you 💐 💐
Goodness, that sounds a lot to contend with, but at least action is being taken. I hope you get a diagnosis soon, along with the correct medication.
Good heavens, poor you! I can’t believe the neurologist got this so wrong. I really hope they’ll get to the bottom of this now and you get the treatment you need❤️
It was partly my own fault as I am too claustrophobic to have an mri scan but she did say it doesn't always show up even on this scan. To be quite honest she just wasn't bothered and just said will see you again in 6 months so am glad this is being looked into now x
Thanks for the advice Dottie i will look this up. The sad part is after all this my sister told me we never had chicken pox as kids so the shingles vaccine was totally unnecessary as you can't get shingles if you never had chicken pox, wish I had never had the vaccine, but don't think is down to that as i have had this for a long time but think my ear problem maybe down to the vaccine. Have had lots of problems and an op for sinus's so keep those clear with daily washes and gel to stop them drying out x
Yes it could be this caused the kidney drop, not sure about the other bloods being affected, although nobody discussed this with me. I think because of the pain and swelling over the ear the doctor is more inclined to it being GCA as its more like arterial problems and this has been there well before the vaccine. I just need to feel well again so am impatient for a correct diagnosis. Thanks for your input it is helpful to look at other things x
Hi Izb1,it sounds as if lots going on in your body and its a map of what you are suffering with needing diagnosis, by your explanation it could a kidney function issue ie glomeritis or leaky idiopathic issue definitely if creatine levels in blood are changed.I had ckd for 3yrs as was poorly but now all stopped and medication withdrawn after a biopsy discovery of leaking membrane in kidney but 3yrs on ramipril has managed that we'll. Good luck and hope you feel better soon.
To make matters worse I got thrush through Doxyclyline , I have been on this antibiotics loads and this has never happened before so was quite surprised but thankfully the medication is working now giving blessed relief x
Oh Mrs what an awful time you have been having but you still manage to remain upbeat with your posts and replies...Hopefully you will be on the mend soon and back to your self before long ... being in pain all the time is awful 😖
Wishing you good health very soon 🩷🧡💛💚💙
Thank you lovely x
You really have been through it, poor you. I hope they get to the bottom of it all and treat accordingly.
Hope you're feeling better soon xxx
Hi Irene, will I'm glad you are being properly tracked now. My favourite words from a nurse are "We'll sort it."I'm off to the Royal Academy of Music to play two songs, Over the Rainbow and A Nightingale Sang in Berkeley Square. I will keep your in mind as I tinkle the ivories! Very best wishes to you and hope that the weeks ahead put you on a better road.
Thank you Greenthorn , like lots of people at the moment we are left on the sidelines to cope on our own until something goes wrong and much as I didn't want to go to A & E I'm glad I did. Keep those ivories tinkling x
Stopped the epilepsy tablets over a week ago they were making me feel awful. Think the steroids are helping and Amytripyline are helping me with sleep as its painful to lie on my right side x
I have been on Methotrexate to suppress my immune system for years but you never know if it's connected, glad yours was found and meds altered. Thank you for your support x
Oh my Irene. I had no idea what giant cell arteritis was but now I do after looking it up. You have been through and are going through such a horrendous time. I'm really sorry to hear it. I am glad they finally seem to have a better grasp on what is going on. The drop in kidney function could be the medication you are taking. I have kidney impairment due to the anti rejection medication I am taking. In fact many transplant patients eventually end up going on dialysis or having a kidney transplant. I try to drink a bit more water as that helps. Once you stop the medication your kidney function may bounce back though. I hope things just get better from here on out. Sending you much love and please keep us posted!
Cas xx 🐶🙋
Thank you Caspiana, I am just taking what the hospital gave me at the moment and have stopped everything else and must admit to feeling better. It must be a worry for you to have this rejection in your thoughts. I think you have done so well and hope it continues. I think once the biopsy is done it will confirm it one way or another and i can move on and get the correct treatment. Will keep you updated x
Oh no lovely Irene 😘 That's all sounding horrible!! What a rubbish time you're having 😢 I really hope they figure things out soon and help you the best possible way!! Don't worry too much about a single kidney function reading...there are lots of factors that can affect it. They'll need to check it over a couple of months...unless it suddenly keeps dropping quickly dramatically! Mine is actually quite improved from years of it being thirty something, to 50 now.
Sending you lots of love ❤️
Dee x
Thank you Dee, think it was the gp that was more worried than me about my kidney function I was more naffed that they have cut backs at the surgery and are now using the old big needles that really messed up my vein after three times of taking bloods, my arm was a right mess. Did you find out why your kidney function was so low ? Hope you are ok miss you in site x
Ouchie...poor arms!! ...you reminded me of having arterial blood gases in hospital...they're always a bit ouchie. I'm glad your GP seems on the ball! Hopefully they'll work things out soon!
My CKD is caused by my rare auto-immune thing...IgG4 disease. It's affected my pancreas and kidneys and when i first got sick, my gallbladder, bile ducts, and liver too. Gallbladder is out (back in 2000) and my liver is basically ok these days.
I'm doing ok. It's been quite a stressful Yr...I started off in hosp, and my mum's been in 3 times. Things with my dad haven't been great and it's been really stressful. But I'm doing ok...just trying to keep on top of it all.
🌸❤️🥰😘🤗
Aaaw so sorry to hear things are not good, stress can't be helping you and coping with so much at home won't be helping. Will send up a little prayer for you and hope things pick up soon x
Hope they get u sorted Izb1.so sorry yr having such a tough time.Dotties right,keep a note of what does + doesn't work,dosage etc + any new symptoms .get well soon x
Thank you Pat, not really sure what is working but glad I am feeling a little better and able to eat x
Oh Irene what a lot to deal with! Hope you get a proper diagnosis soon and start to feel better🤞. Take care xxx
Thank you Nula, kept telling everybody I was feeling really poorly but not sure anybody believed me, think it was a good thing I went to A & E. The taxi man had to tell me where it was its oIver 10 years since I took my mum there and it has moved ha! x
Hi Izb1,
First you Kidney Function of 55 is CKD Stage 3 a - I am 43 and CKD Stage 3a the same as you. Stage three is moderate but you can live a full life term with that.
I take epilepsy tablets capsuls (Gabapentin) for numbness and pain inn my fingers and thight, I don't like them but GP says nessessary.
You are going through a lot all at once, in particular the pain in your ear/eye and teeth must be painful.
I am going though a battery of tests at the moment , when it all come at once, then it makes us feel bad and even scared at times.
I hope you get things sorted out very soon, in particular you face pain. that must be awefull.x
Thank you Ern. I think the epilepsy tablets have caused the kidney drop, I take Gabapentin for the pain and these don't bother me at all, just make me a bit tired. I am just taking one at night now that the other tablets have kicked in. Hopefully once I am diagnosed properly then things will improve x
I take gabapentin for neuropathy.they really help with pain from neck,down arms and into scalp x
I was given them for neuropathy - They do help my nerve pain, except from spine. I take morphine for that, it works but has side effects, x
They don't help my spinal pain in mid- lower spine either.but neuropathy is unbearable without gabapentin x
Dear Irene, I'm so sorry that you've been suffering this awful pain. i hope the doctors can get to the bottom of it soon and that things will be better for you. xxxx
Oh my, you really are suffering at the moment aren’t you, I hope it doesn’t take too long to get you sorted out with a firm diagnosis & treatment, sending hugs to you & wish you well very soon 🌷💐🌺😊 xx
Thank you Looplorre just need to get back to normal x
What an awful experience. Hoping that you get a correct diagnosis and appropriate treatment at last.
How awful, I know what it’s like being wrongly diagnosed but the pain you are going through must be horrendous. I really do hope they get to a correct diagnosis and very soon, hoping it’s not GCA but something they can treat and quickly. Here’s to a very quick recovery.
Good luck and take care
Wendy xxx
My gp said that as it is swollen and tender over the top of my ear and the pain is there all the time it sounds more like an artery and think she maybe right. The hospital are treating me for GCA at the moment with high dose steroids for a month until the biopsy on Friday, fingers crossed I can get a definite answer after this x
I’m so sorry to hear you have ad to go through this. I have a different type of vasculitis and most of us have to wait a long time to get a diagnosis. There is a PMR/GCA thread on HU and there’s a lot of very knowledgeable and helpful people on there. There’s also a section on vasculitis U.K. on GCA. I would stick to these sites as there’s a lot of rubbish on the net. Good luck on Friday. I hope the steroids improve your symptoms quickly.
Thank you Mooka, I will wait until after my biopsy and see if it GCA or trigeminal neuralgia before I go any further. I still can't lie on my right side as its still painful but it has eased alot since I have been on abs/steroids. I think the fatigue I am suffering at the moment is making me less inclined to look things up which may not be a bad thing x
Sorry to hear you've been having such an awful time but it sounds as though someone might be sorting things out for you at last. Like Cas, I didn't know what what arteritis was until I looked it up. It sounds very nasty until under control, but then manageable. I hope you soon reach that stage.
Sending virtual hugs. ((((( ❤️ )))))
xx Moy
Good luck with all the testing. If it does come back positive for GCA I'd recommend joining that board (I'm also a member there as I have PMR - polymyalgia rheumatica) and GCA and PMR can go hand in hand, unfortunately. I was diagnosed with PMR in November 2022 and initially started on 15mg prednisolone which did absolutely zip against the pain so that was increased to 30mg. Started tapering after seeing a rheumatologist (if you can see one asap, that might be helpful) and he sent me for various tests which included a lung x-ray, which was when they found my 4cm tumour (benign, removed April 23) and reason I'm on this forum as I'm still on a trimbow inhaler for COPD.
PMR pain is mostly in the hip girdle area, shoulders and upper arms although it can also affect hands/feet and can be mistaken for RA hence why seeing a good rheumatologist is a great idea once diagnosis has been confirmed.
Thank you, yes I will join that board if confirmed GCA and get the glaucoma clinic to check my eye as I have a large black spot that has recently come to light. I did go through the eye hospital but think I may need something for my right eye as the laser treatment didn't work on this eye. I saw a rheumatologist in ACU when at the hospital on Tuesday and he was the one treating me x
what is your dosage of the prednisone? You should check out the pmr and gca site. Sounds like gca to me. I have PMR.
They have put me on 8 per day for 14 days then 7 for further 14 until biopsy results x
if they suspect gca you are usually start at 40mg. You don’t want to lose your eye sight.
The biopsy can miss the gca so they usually do an ultrasound of the veins.
Did they check your inflammation markers in your blood?
They did an ultrasound at the hospital on Tuesday although not always reliable if showed negative but the doctor assured me that the biopsy would show if any signs of GCA so waiting that. He did say that 35 mg would be sufficient of Prednisolone and it seems to be working , I am sure if it proves i have GCA they will adjust this . Thank you for your support x
That’s good. I misunderstood your first comment on how much you were on. Glad you are feeling better.
I hope you get sorted and start to feel better
Thank you Germantara, will keep you all updated x
Hi
How could they miss so much and have you in pain so long? I hope you are getting the treatment you deserve now. And you are getting better everyday I hope they get to the bottom of it soon. And give you a bit comfort , wishing you well.
Eian
So sorry to hear you are having such a difficult time recently it really does get you down and obviously the waiting and thinking does nothing for your worries and anxiety. I hope your medication is kicking in and helping you to feel better until you have your tests. Brian
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