Understanding Rheumatologist deptartment
Posted , 8 users are following.
just wanted to share with you all, I received a letter to change my next Rheumatologist appt, I rang the department to make sure I would be seeing the same consultant, whilst I was on the phone the nurse gave me a telephone number of the specialist Rheumatologist nurses, if I had a flare instead of going through my GP they would deal with it. I did not know this existed I thought I would have to go through the GP. Does anyone else out there know about this. I was comforted knowing that I would get the correct advice as they have access to my file.
1 like, 14 replies
EileenH margaret89358
Posted
Patients should be given access to a rheumatology specialist nurse practitioner - they know far more about rheumy problems than the average GP and tend to be far more practical than doctors! But it usually means calling their number and waiting for them to call back. I had one from Bishop Auckland because the specialist wanted to put me on sulphasalazine and I had to be assessed. I rang to discuss something - I'm waiting yet for the call back!!!! 8 years!
But I do know people who have fantastic relationships with their specialist nurse - just a lot of hospitals haven't the funding for one. But they are a lot cheaper than a consultant so no doubt they will increase in availability.
pauline36422 margaret89358
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margaret89358 pauline36422
Posted
brenda69464 margaret89358
Posted
Thankfully, everyone here is knowledgable about the disease (first hand) and more than willing to share what they have learned and experienced.
Thanks everyone!
EileenH brenda69464
Posted
Anhaga brenda69464
Posted
I'm in Canada, too, Brenda. Nova Scotia. I've received good care (once I was diagnosed which took a while) but the disease is very isolating. It's been mentioned before that we Canadians suffer from too much geography. Certainly true in the case of PMR support, or lack thereof. Thank goodness for the UK ladies who have contributed so much to this forum, and actually got the healthunlocked one started, and more!
brenda69464 Anhaga
Posted
As I said earlier...I am most thankful for this forum and everyone helping out!
I used to be afraid, and most ignorant about PMR; but in a short few months have received a lot of information and support from everyone here!
I have learned to have a much more positive outlook,how to cope, as well as what to expect.
I also live with MDD, PTSD and anxiety issues so this added to the mix WAS scary..............but............no more !
Smiling and happy.
BettyE margaret89358
Posted
linda17563 BettyE
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Yes, Betty, my sister has excellent support with RA at the N&N, can ri ng practise nurse at any time. She came with me last week to see my useless rheumy, and was shocked how little he knew or was concerned about how much pain I'm in, she told him I had the same symptoms as her, he replied, I'm zero negative, she said so was I, but I have it, and went on to say, my sister is now in more pain than me.........he ignored her!
I dread going back next week to see him, it's pointless, he asked me to up the pred from 9 to 11, saying if it's PMR it will get rid of your pain when going that high........I am still in lots of pain😕
BettyE linda17563
Posted
When I was first diagnosed with PMR (1999 ) my GP prescribed 30 mgs. I was pain free 100% in four hours which was wonderful but when I had it again same GP said he would not be so aggressive this time and I started on 15. The pain took a bit longer to go and it took 5 years with lots of ups and downs. I've always wondered whether hitting it with 30 first time was what made the difference. I always mean to add up the total Pred. I took on each occasion. Wouldn't prove anything, of course but so many doctors seem over exercised about about Pred. levels. Has anyone done a comparison of long term effects differences between PMR and GCA patients, I wonder. My friend who had GCA ( but not PMR ) was on 60 for quite a long time and it was years before he got to zero.In his late seventies he came through a multiple by-pass op. and lived well into his eighties.
To say categorically that 11 will be enough to make you pain free if it's PMR is just rubbish. It might be for some.
Maybe you'd be better with your GP. Mine did refer me to RH. dept. but they were so chaotically badly organised I asked if he would let me just stay with him which worked fine. I wonder if I'd seen the consultant whether I'd have been hustled onto too low a dose?
EileenH linda17563
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EileenH BettyE
Posted
" I've always wondered whether hitting it with 30 first time was what made the difference"
I do wonder if that is why they have revised the recommended starting doses up a bit. After being pontificated to on another forum that "the pain goes in 24-48 hours if it is PMR, otherwise it's not" I asked one of the research Professors about long she gives patients to respond. She said up to 1 to 2 weeks - and then raises the dose rather than say, not PMR. She also looks at a lot of factors before choosing the starting dose.
But I agree - I think a higher starting dose is better, They could easily start with 30mg for a weeks and then drop rapidly to 20mg.
linda17563 EileenH
Posted
Yes, I know Eileen you are right, so after next week, he won`t be seeing me again......I feel quite lost really with no-one seeming to know the answers, which writing this down seems ridiculous.....and makes me very low......
?In the new year, I will be looking into getting another rheumatology appointment, I think it will have to be Prof Dasgupta.....nearer for us.....husband hates driving!!....this is why I have hesitated, but he can see how much I am restricted and in pain.......it can`t go on, even tramadol doesn't take it all away......and don`t want to take too much of them anyway.....
sandy08116 margaret89358
Posted
Not only are they more qualified (in vasculitis), for me - it is free. In NZ, doctors charge but hospital care is free.