Posted , 8 users are following.
end July started with symptoms of pmr had blood tests and they don't show anything untoward off steroids and symptoms are back again Doctor not convinced by blood tests that I should have steroids am now off them
0 likes, 17 replies
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EileenH Guest
Posted
When were the blood tests done? Before you went onto pred or since? And what dose of pred?
20% of patients with PMR/GCA do not have blood markers that are out of the normal range. Normal range is a guide of what might be found in a very large (10s of thousands) population of nominally healthy people. Until fairly recently it was accepted that as people aged, their markers went up and that was normal. Now they realise that when they are going up it is a sign of low level inflammation in the body. So instead of accepting that an ESR of 35 is OK for a 60 year old they now realise it too is a sign there is something wrong. Added to that is the fact that there will be some people whose ESR was normally in low single figures - like mine at 4-7. I spent 5 years going to the doctor to be told the same as you, can't be anything wrong, the blood tests are fine. The fact I could barely move was ignored. During a particularly bad period 5+ years ago my ESR hovered around 18 for several weeks, no-one even twitched, it was normal range. In fact it was considerably raised - FOR ME.
I think it is appaling that a patient presents with symptoms that are relieved by pred but are then denied the pain relief because of a misunderstanding of blood tests and the disease. Can you see a different GP? Two in our practice turned out to be a world apart - he wanted blood marker levels to be high, she was only interested in symptoms and response to a moderate dose of pred.
Guest EileenH
Posted
Hello Eileen thankyou for the reply. The blood tests were done before Pred. When I started Pred I was on 15mg and an instant reaction to the problem. i.e. no pain etc almost perfect. I appreciate your comments and have thought of letting the Doctor see them. In fact she is dithering a lot and doesn't really want to give me steroids as I appreciate they can harm your organs. I am prepared to take the chance.
I think she my ESR was 16 but am not sure what the other reading was. Had two blood tests up to now. Will go back a.s.a.p. and maybe like you say see another doctor.
Many thanks once again for your comments they are really helpful
BettyE EileenH
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BettyE
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When I was diagnosed first mine were very convincing indeed so I got fast diagnosis so now that my last ESR reading was 2, does that definitely mean no inflammation?
EileenH BettyE
Posted
I know the woman had taught him how to use Dr Google! Hopefully he learned to make use of it more often!
No - the 20% is the proportion of patients with normal levels. "Normal" ESR is up to 20 - newborn babies have an ESR of zero and it starts to rise immediately (no idea why) and eventually should stabilise at some point although it does rise throughout childhood. If you have an ESR of 2 then there certainly isn't much evidence of inflammation! Now whether your history of pred makes a difference I don't know. Nor, I imagine, does anyone else!
EileenH Guest
Posted
"I appreciate they can harm your organs"
Probably not as much as unmanaged inflammation will! Ask her what other medications she refuses to use because they might harm your organs. Paracetamol doesn't do livers any good either, nor does alcohol. NSAIDs go for the stomach and other painkillers cause cardiovascular problems. All of them can damage kidneys. Methotrexate can damage lungs and livers. Bisphosphonates have more than one face and some are beginning to look a bit dirty. I could go on ...
If she is so terrified of pred - how does she manage patients on far worse drugs which haven't been in use for 60-odd years? There really isn't a lot that isn't known about corticosteroids.
You won't be staying at 15mg - you will reduce slowly to find the lowest dose that works and with a bit of luck that will be in the "physiological range", well under 10mg/day. Your body makes almost that much corticosteroid in the form of cortisol, it is essential to life. The side effects there are minimal. But pred doesn't have all the side effects for everybody - my bone density has barely changed even without bisphophonates, I don't have diabetes, I gained weight but I have lost it again - my doctors here admit there is no sign I am on steroids.
You know a moderate dose of pred works. And so does she. Without pred you will be pretty immobile - putting you at risk of weight gain, osteoporosis, depression, dependent on others and with a poor quality of life. I know - I've been there, I had 5 years of it. Pred gave me my life back - but I had already gained a fair bit of weight and lost a great deal of fitness which I have not managed to regain. Quality of life is a very important criterion - and she is denying you that.
ptolemy Guest
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Guest EileenH
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Just to add that my sisters Mother in law had symptoms for 9 months before a consultant (PRIVATE) diagnosed her and she is now LIKE A NEW WOMAN according to my brother in law. So you see all Docs are different. Unfortunately
BettyE EileenH
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Many thanks,Eileen. I always thought that my OA aches and pains were different from PMR but I would be hard put to explain how. If newborns are nil and I'm 2 I wonder what that tells me. ( just joking )
EileenH BettyE
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EileenH Guest
Posted
As ptolemy says - why do they start something they are then scared to finish???
Guest ptolemy
Posted
Hello there thanks for your interest. It's a funny situation as she didn't actually give me the steroids it was the nurse clinician. She only gave them to me when I said my mother had PMR and she was on Pred. Also she was going on holiday and We were going to the Isle of Man in August.
I couldn't believe the difference even after one dose. This is why the Doc is taking the result of the blood test not how I am personally(THE PATIENT) Even when I showed her all my symptoms(I had written them down) she said you have all the symptoms. Anyway we'll see when I visit Doc.
To be continued:-----
Guest EileenH
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kathy61958 EileenH
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Hi, Eileen
Isn’t it sad that so many stories of PMR & GCA mirror. My family doctor knew immediately what was wrong with me when I explained my symptoms, but he was reluctant to renew the prednisone prescription after I was pain free for a month. My sed rate was 58 and I was right back where I started. Yes, I was angry! At the insistence of a friend, I asked to be referred to a Rheumatologist. That was when everything turned around. I have plenty of prednisone now, I taper slowly and if my symptoms return, I go back up. My Rheumatologist told me that I’m the only one who can gauge the pain regardless of what inflammation markers show.
Yes, I have most of the nasty prednisone side effects but I’ll take those over the horrific pain.
Perhaps you need to be referred to a Rheumatologist😉
Guest kathy61958
Posted
Hello Kathy I note you have replied to Eileen and I agree with you wholeheartedly in one you say. What's wrong with these Doctors????
Guest kathy61958
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