Just me AGAIN...well i had my 2nd appointment with the other doctor in the practice yesterday..the ESR result she ordered is 9...!! SO she says that means it's definately not my PMR that's causing my pain. She said the only things my blood tests had shown were that i had gallstones and that i'm perimenapausal...!! i asked how come i was labelled perimenapausal when i haven't had a period for three and a half years...she said everyone is different...she then went on to say studies have shown it doesn't just cause flushes etc but can cause joint pain as well so maybe that was part of my pain...i said i'd read somewhere a low ESR number didn't always mean it isn't PMR she said she'd e=mail a rheumatics helpline...so i asked what i should do in the meantime about my pain..!! Well it won't do any good to increase the steroid as it wouldn't be effective, and although you're on a lower dose of tramadol studies show that it's not always effective if the patient has chronic pain" then she went on to say "i'll send off that e-mail to rheumatics" as in consultation over...i said again "what have i to do about my pain" "well if you think it'll help you can raise the tramadol" maybe i'm expecting too much but i'd have thought if a doctor thought the medication you're taking wasn't doing the job there would be some patient doctor discussion to try to rethink pain meds...yesterday morning i added 100mg tramadol to my meds...it definately made a difference to the arthritis in my feet but the whole pelvic girdle was still really sore. so decided today to put my steroid up from 7mg to 10mg and it made a big difference...but i don't know what to do from there as i'm 99% sure they won't sanction an increase...i am so completely fed up...i've had this doctor in the past and she was really nice but i think after my little ding dong with the other doctor they've closed ranks...i wondered if i should ask for a referral to the pain clinic...what do you think???
Doctors have been over-indoctrinated on the dangers of prednisone! That makes it really hard for those of us who really need it. 10mg is still a low dose, but if you stay on it more than just a few days, you will not be able to go back to the 7, and that might be disastrous.
Don't know if a pain clinic would help. In the US they are trying to reduce any use of opiods, so a pain clinic might not be helpful any more. But it is worth a try.
I am much less patient then you. To diagnose my PMR I had to go to 3 different doctors... If the doctor did not resolve my problem, I moved on... Maybe it was extreme, but I gave first and second one week ... 3rd doctor listen much longer to my symptoms, suspected PMR and referred me to rheumatologists. It took me exactly 4 weeks from the first attack to diagnose.
I may have got this wrong...but can`t you ask or pay to see a Rheumatologist....I am the other way round....doctor much more understanding and works with me....It sems we all have to find the person that does that....although it shouldn`t be. Many doctors just go by what they read....not the patient talking to them.....don`t give up trying, the stress of being frustrated will only make things worse for you....as I know from experience! Good luck and keep us posted.....
Hello, have you contacted the PMR/GCA helpline they are extremely helpful with their info. Also a book by Kate Gilbert is worth reading all proceeds go to the charity. My GP upon reading said she would recommend to any of her patients who have PMR/GCA or indeed those taking steroids.
Good morning I have just read your annswer to IssyR and I have a question please. I was on 1.5mg of pred and had a flare, I increased to 7mg which didn't get riid of pain, so increased to 10mg about 5 days ago
can I reduce to 7 now or must I "come down" slowly.
Thank you
Either you have to demand a referral to a rheumatologist (who may still disagree) - which will take ages probably - or you move to a different GP practice.
She is wrong - approximately 20% of PMR/GCA patients never mount the inflammatory response (raised ESR/CRP). Has she checked the CRP too? Occasionally it may be raised without the ESR being raised but I have never had raised levels of either.
You could take this reference to her:
Polymyalgia rheumatica in patients with a normal erythrocyte sedimentation rate.Helfgott SM1, Kieval RI.
where they state about a fifth of the patients they studied had normal ESR levels.
or this professional reference from this site:
https://patient.info/doctor/polymyalgia-rheumatica-pro
which says:
"PMR can be diagnosed with a normal ESR and/or CRP if there is a classic clinical picture and response to steroids. These patients should be referred for specialist assessment.[4]"
The pain clinic isn't the real place to be either - it is a rheumatologist you need.
Studies DO show that PMR symptoms can be caused by hormonal imbalances in the perimenopause - however, they can also be diagnosed by doing hormone levels and treated appropriately. She can't use that get-out and not do anything to check that is the case.
So don't give up - even when she doesn't email the helpline or they agree with her! I can play the references and helpline game too. She be quicker googling the reference than sending the email - I searched "normal range esr in polymyalgia rheumatica" and it took a fraction of a second...
Did the 10mg do the job? You can go straight back to 7mg after just a few days of a higher dose - many people are given, say. 10mg pred for a week and just stop and this isn't really any different above about 5mg. You might feel a bit of steroid withdrawal discomfort - so dropping 1mg every couple of days might be more comfortable. A change from 10 to 7mg isn't stopping pred altogether which is dangerous and the main reason for the slow reduction.
I absolutely agree, my consultant says 'treat on symptom not bloods', which GP does of course disagree with.
Thank you Eileen, I'm still having pain in my right shoulder but have had shoulder pain for years so I don't feel that this is PMR my other pains and the fatigue seem o.k now. I will go down to 1mg from tomorrow.as you suggest. I am ver grateful for your imput.
We are off on holiday on Sunday and I am just preparing my medication!!!! I need enough for a month, you can just imagine the fun I a having sorting it out I need an abbacus! I keep checking it and re-checking it. Oh where have those days gone when I only needed an asprin...We have just had to go out to buy a bigger "carry on Case" to house the medication. If i don't laugh I will cry........
Maryx
I wonder why rheumies learn clinical decision making but GPs become so attached to their bits of paper and normal ranges?
It is the one thing I am almost paranoid about! We have a camper van - I take the toilet bag down with everything in and check it. Then the next time I take something down I look again, and have been known to request OH who drives it to stop halfway to the motorway to be absolutely sure!
Flying's a bigger pain - I daren't put things in the checked baggage! My daughter has 2 x 1 litre plastic bags with just medication for asthma and she came to visit last week for 4 nights, just hand luggage. She only got worried when the girl next to her on the train was off to London for one night - with a full size case AND hand luggage!!!!
Have you ever tried Bowen therapy for the shoulder pain? It helped my top-up shoulder/neck pain that isn't directly PMR but myofascial pain syndrome. They are often found together. Definitely worth a try.
Shoulder pain on one side may be osteoarthritis. In my case I have bone spurs on my left shoulder which may tear muscle if I move my arm a certain way. Because of that, last summer I had constant horrid pain in that shoulder, but I got an injection of streroids in it. That helped almost immediately and enormously and the shoulder has been pretty OK ever since then. At the same time I had shots in my knees which didn't help at all.
I don't want to replace that left shoulder- my right shoulder is totally replaced, because replacement usually results in more limited motion, and I need the left shoulder as it is to shut the back door of my hatchback! That sounds absurd when I write it down.
This kind of shoulder pain is different from PMR symptoms. In my case I had little cramps and tender spots all over my upper back and upper arms on both sides. That struck me as really odd since one shoulder had already been replaced; I was quite puzzled that the cramps were on both sides. Then I was diagnosed with PMR.
Eileen I have checkd out a therapist and will get an appointment as soon as we return from holiday. (I.m still checking my PILLS!!!!!!)
Thank you again for all your sound advice.
Mary
Maybe there'll be a good massage option on holiday - get them to do some gentle work on the shoulder, nothing heroic or it may make the PMR feel worse (massage can release the cytokines that form the hard knots of muscle fibres you can feel in MPS).
Where are you off to? Somewhere nice and warm with dry weather I hope!!!!!!
Yes I.m sure you're right this shoulder pain is different from PMR. Eileen has suggested Bowen Therapy so when we return from holiday I will give it a go I will oof course let you know how it goes. We will be away for a month. so hoping some sunshine will help.
We are going to Naples,in Florida.have been before and the weather has been lovely this time of year and its a good place for walking (gentle walks).
Not looking forward to the journey but I know how lucky we are to still be able to do this and perhaps some of my pain will ease in the warmer weather. Will have IPad so will be able to read the posts. Although I have has PMR for 6 years its only lately that I have been on the forum and it has been so helpful. I will try to send you all some sunshine back!
Maryx
Not bothered about sunshine - we have loads of that here in northern Italy - but a few more therms would be pleasant. It is also way too warm for the time of year - but not warm enough yet to sit outside on the balcony 
Not that we should be able to in January in a ski resort - but we went up the valley for lunch today and the outside tables were full!
Its been so dark & grey and very windy here but not cold., Daffodils are blooming in the garden,
Sounds lovely to go up the valley for lunch. Is there much snow?
Depends how you look at it! There is a few inches on slopes that aren't south-facing - they are nearly bare again! The pistes are mostly OK but are almost entirely based on artificial snow with a topping of natural but it is now 10 days since anywhere had fresh snow, over 2 weeks in some places and even then it was only a few inches. It is a really bizarre winter - there hasn't been much precipitation of any sort for the last 4 months really, nearly 3 months before Christmas with none. It has been well below zero C down here in the valley - but much less cold on the tops except for one week where it was -15C!