Pain management

[Lindafrancis]

I have had PMR for nearly years only without symtons when on steroids. Just had results of blood tests that were normal so GP unwilling to give me steroids but Iam in a lot of pain and discomfort very tired and have to wait to see reumatologist march 2018 so till then Iam to keep taken high doses of strong pain killer i.e tramodol and codamdol which probably isnt doing my liver any good anyone had similar situation

[HeronNS]

How many years? And have you been off the pred for long?

[Rose54]

Hi

Lindafrancis

Welcome to our site

How long have you had PMR and what dose of Steroids are you on at present

[Lindafrancis in reply to Rose54]

Sorry I missed the 2 out. I was on steriods for 1 year they took me of them because I lost more weight and I had two bouts of pneumonia not a good time for me.Since then I have had two separate occasions on steriods with no symtons and best of all pain free

[Rose54 in reply to Lindafrancis]

Hi

If it is PMR the only thing that works is Steroids

I was on naproxen before diagnoses and never touched the pain .

Getting of Steroids in a year is very fast

Blood test don't always show inflammation so not a good indication of how your doing .

[piglette]

Does the Tramadol and codamol work for the pain? If so it is unlikely the pain is from PMR, although from what you say it does sound like PMR. Did your blood tests ever show raised inflammation markers originally? Hopefully the rheumatologist will sort things out in March, but it is a long time to wait, a week of waiting would have been too much for me, the pain was excruciating.

[Lindafrancis in reply to piglette]

The pain and stiffness is only eased with my painkillers I have only been completely with out pain when on steroids .When I was first diagnosed I was told it was very high and I only found this out by changing my GP. I had been going back and for to my old GP and even though I was having blood tests nothing was ever said till I change my GP after 2yrs of not feeling right. I was put on steroids for a year by a reumatologist but was taken of them slowly due to having pneumonia twice and severe weight loss but the good news was pmr symptoms disappeared but they returned and my bloods raised slightly so back on a short sharp dose of steroids ok on the steroids this time never felt better once steroids finished back came the pain and stiffness but no inflamation showed in my bloods so doctor won’t put me back on steroids. I seem to be going round in circles.

[PMRpro Ambassador in reply to Lindafrancis]

Some people don't get raised bloods again once having been on pred - no idea why, just is so. I never had raised bloods at all. It does make me angry when they will only treat lab results and not the patient.

[SheffieldJane]

They haven’t stopped you cold turkey have they.?

It would be helpful to know how long you have been on steroids and at what doses, also how you came off them. All this will be relevant to how you are feeling now.

Of course no inflammation will show up in your blood tests while you have symptom control with Pred.

Where in the country are you?

[SheffieldJane]

PS what condition are they treating? ( Lindafrancis)

[PMRpro Ambassador]

Do they work? They did nothing for me so I didn't bother for the 5 years I had PMR without pred - I to had normal ESR/CRP despite textbook symptoms. It happens in up to 20% of patients - so not that uncommon.