Hi. Firstly I wanted to say a general thank you to everyone who replied to my first post. The advice you offered was very valuable and it was comforting to know people understood how I was feeling.
So I went to my GP today to discuss my pred. I am about to run out!! He agreed with all of you that firstly I should not be stepping down so quickly (from 15 to 0) in 6 weeks plus I should not being doing it in short bursts (the minimum course is usually 2 years with a step down by 1 mg at a time. He was happy to give me a repeat prescription.
He has not yet received the consultants letter (4 weeks now since my appointment!) but could see my blood test results from the hospital. He was rather concerned about the diagnosis as my bloods are normal and show no indication of whatever they are looking for. Has anyone else had normal blood results?
When writing my prescription he asked about any side effects that I'm suffering from pred. I said that I am getting hot flushes. Does anyone else get these? This immediately ran alarm bells in his head regarding the menopause but there no other symptoms yet! Apparently some women can get similar symptoms to Pmr.
So now im confused. He doesn't want to change anything yet until we see what the consultant says but I need to go back in a month. I have collected my prescription so am back up to 15 mg and should feel better hopefully by tomorrow.
This is all very depressing I broke down in tears at the doctor but he was great (very embarrassing).
Any words of wisdom/ opinions would be gratefully received
Written by
Nicky1969
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Hi Nicky, no wonder you had a few tears, quite understandable.
Hot flushes can be a side effect of Pred, as can mood swings, hence the tears. It's not abnormal for your bloods to not show any signs of inflammation, lots of people have never had high readings.
Stick with the 15mg of Pred, hopefully you will feel better within a few days and then things can be reassessed at your next appointment in a month's time. Might be an idea to keep a diary of what occurs so you can discuss with doctor.
Meanwhile, if you have any other thoughts or problems then post again. Take care.
The sweats are common in both PMR itself (it's an autoimmune disorder and they often come with sweats) and in some people you can even find a mild fever (raised temperature). My sweats improved a lot at higher doses of pred but have returned at lower doses. Other people get them due to the pred - and they tend to improve as the dose reduces.
About 1 in 5 patients with PMR/GCA have perfectly "normal" ESR/CRP values - I'm one, polkadotcom is another I can think of off the top of my head. Neither of us have ever had a raised blood marker. Mine has hit the dizzy heights of 7, 4 is more usual!
Yes, there is one form of PMR that is due to hormonal problems in the menopause - but it doesn't respond quite so typically to pred.
Don't worry about weeping on a GP - it's part of the job!
I kept a detailed diary of how the symptoms improved in response to 15mg (and returned when I stopped pred) - the rheumy I saw wasn't in the least bit interested, but it served its purpose for the GP who DID agree my symptoms and response to pred suggested PMR rather than anything else. Always useful to link dose and symptoms getting worse/better - and any other factors like weather and doing too much!
Nicky, I am glad things are now sorted out. Hot sweats were the very first side effect I got, I could not think what was happening. What was really annoying is that I sailed through menopause with no problem.
I first had fatigue and sweats in my early 30s - a superb gynae put me on HRT which helped immensely. But I really don't think it was the menopause - my last period was at the tender age of 57! The HRT kept me going (I had a couple of breaks and the symptoms came back) unitl there was one scare too many and I thought it was time to stop. About a year later PMR appeared on the scene. Were the symptoms linked? I'll never know but I suspect they were.
I was on HRT for over 20 years and I was fine, I did ask to come off it once but the DR said it helped with your bones and then one day he rung me to say he wanted me to come off it I had to gradually wean myself off but then within a couple of months I had PMR I have often wondered if there was a link
Doctor originally blamed menopause for all my symptoms, no hot flushes at that stage since I was not on pred. Just for the endless tiredness and pain. It wasn't til I discovered she had written in her notes that I had mild pain that I knew we had a communication problem!! Now I am on pred I get the hot flushes I haven't had from menopause, oh the joys , still the pain is now so much better that it probably has achieved mild status :-). Like you I am in the early stages of medical intervention, frustrated by it all but getting there. I look forward to happier healthier times soon . luck and persistence is a gift I would wish for us both.
Thank you Its good to hear that others are encountering the same mis diagnosis. I was initially jubilated thinking oh that's ok it's going to happen at some point anyway, but having read others comments I realise that was short lived and probably just hopeful thinking.
Diary is most important. My rheumatologist asked for my medical records. I sat with the GP. while she trawled through the records and I said what's on the screen in no way reflect the pattern of symptoms I have experienced because you don't get to see a doctor every time a symptom rears its ugly head. Bursitis and sciatic type pain has been part of the picture. For a start you have to get to the doctors surgery and when I get to see the doctor I stick with for continuity's sake, I am not very good at remembering once a crisis has passed On my "to do" list is to make it quite clear how disabled have been on the occasions when what I now recognise as flares of my condition have occurred for no apparent reason. I too have not got raised blood markers. In spite of the required "magic" response to prednisolone i.e. from walking with a stick to bounding up and down the stairs overnight, the rheumy most recently has referred to "an element of PMR" whatever that means but I am on a maintenance dose of 5 mg because any lower and the fluey symptoms etc. return.
However, as I say, I don't think that initially I made enough fuss and then 6 years ago I was dx.with Parkinsons which confused the issue somewhat as far as aches and pains were concerned The rheumy is very receptive to my typed summary and even asks for a copy which is good because I can get rather fussed and muddled in certain situations which is down to the Parkinsons .
Hi thanks for replying. Keeping a diary seems to be the way forward. As a mum with 2 young kids my needs always come at the bottom of the list and can take months to even find the time to make a doctors appointment. A diary would be a good way for me to monitor it all.
It's good to hear that my bloods are not dismiliar to others, I'm starting to understand why it's so difficult to diagnose.
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