I've been avidly following this forum since mid November & have already been greatful for advice on another post I wrote. I've been for my rheumatology appointment today & would be interested in your thoughts.
To give a quick insight into what's been happening - i haven't felt "well" for nearly 2 years but as I'm 53 I've put it down to the menopause. My GP early last year was really good & did some blood tests & also referred me to another GP in the practice who specialised in rheumatology, as my aches & pains could have been rheumatoid arthritis. It was decided it wasn't and it was after all due to my age.
Fast forward to November 2016 - one evening I had the most awful pain in my left eye, like I had a piece of glass in it. The following day I had a severe headache, went to the pharmacy, who sent me to an optician, who sent me to eye a&e. There was a little bit of swelling on the optic nerve but nothing serious but I was sent to have blood tests. I went back the following week for a follow up & was sent to normal a&e to be admitted. My ESR was 32 &CRP 50.4. I had a ct scan which showed I had a sinus infection & was put on antibiotics & steroids. Since the. I have had an MRI & left temporal lobe biopsy plus more blood tests.
I felt pretty good after coming out of hospital but since a couple of weeks before Xmas I've gone downhill again. My shoulders hurt, my hips & elbows are sore on the bone & I wake up every night with numb hands but the worst thing is the constant headache going from one temple to the other & behind my eyes. My eyes feel like they are straining all the time & seem very sensitive to light. My vision just doesn't seem "right". I feel exhausted too.
Results today - MRI & CT normal apart from showing a sinus infection. Blood test shows inflammation down. Anca test normal. Biopsy negative
Rheumy said not GCA but possible PMR. To be in the safe side he has referred me back to opthamology to check my eyes & also referred me to neurology for my headaches & the fact I have a tremor on my left hand that pulls the little finger & ring finger over to the side.
Rheumy sent me for blood test straight away to check for inflammation plus he's included a rheumatoid test. He's prescribed a months worth of Pred (15mg a day), which I'm not to take until he calls me with blood results as if there isn't inflammation I won't need them.
I'm pleased the results are normal/negative but so disappointed I don't know what's wrong.
I'm sorry I've rambled on but had to get it off my chest!
Written by
Mandrose
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Hmmm - 1 in 5 patients with PMR don't have raised inflammatory markers. Mine have never been raised - 15mg took me from barely able to walk, stomping down stairs like a toddler and crawling back up on hands and knees to normality in 6 hours. One group trials their patients with possible PMR with one week at 15mg - if the symptoms resolve to 70% overall quickly and then return in a similar time frame when they stop they take that as highly suggestive of PMR. Other things tend not to respond so clearly.
Sounds crackers I know - but hopefully the ESR/CRP will be raised and he'll let you try the pred at least. Personally, I don't greatly care what it is I have as long as they've ruled out nasties and the pred works. I'll take being almost pain-free!
Thanks PMRpro - I was feeling a bit sorry for myself but hearing how difficult it was for you at first, makes me realise I just need to be patient, as I'm sure whatever it is will be diagnosed & treated in the end
Not totally convinced by Rheumy's thoughts. Negative biopsy doesn't necessarily mean no GCA. Suggest you monitor things closely especially any deterioration with your eyes. If he does put you on Pred you should notice an quick improvement on the pain and fatigue side, so let's hope he goes down that route.
I'm having exactly the same problems and all my tests for GCA were negative. I have the piercing headaches and terrible shoulder and neck pain and just feeling exhausted all the time. I have been put on amitriptiline for a while to try and ease the headaches which has helped a bit but I find it makes me more tired as it is an antidepressant. I too am 53 and in the last 3 years I've developed all kinds of problems with my joints and worst of all my kidneys.
Just because the tests they do are "negative" does not mean the patient doesn't have a vasculitis. The TAB is negative in more than half of patients and ESR/CRP are not raised significantly in about 20% of patients. Why can't they think outside their box?
Though if you have renal problems - another vasculitis might seem more likely since you potentially have the fatigue of autoimmune disease.
However - have you had your back/shoulder/neck muscles checked out? They can cause quite awful head and neck pain.
Yes, my sister is a physio and whilst there is some muscle tension around my neck a shoulders she can't explain the persistent pain running down the sides of my neck near the carotid artery. She does seem to think there is some vascular connection especially after all the kidney infections I have had over the last few years.
One lady was told she definitely didn't have GCA (on the basis of a negative TAB). She insisted on being investigated further - and a PET/CT scan was done showing considerable vasculitis in the thoracic arteries, especially the aorta. Her symptoms had been mainly in the head and neck.
Perhaps time to get a bit stroppier? Or at the very least insistent...
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