Grateful for recommendations before I start the dreaded Pred. Just been diagnosed by GP. Thank you so much.
Rheumie recommendation wanted Newcastle upon Tyne... - PMRGCAuk
Rheumie recommendation wanted Newcastle upon Tyne specialising in PMR
Written by
Smokygirl
To view profiles and participate in discussions please or .
34 Replies
•
PMRproAmbassador
I can thoroughly recommend Vadivelu Saravanan at Queen Elizabeth Hospital, Gateshead.
He was patron of the NE PMRGCA charity until it was wound up last year and is very well aware of everything to do with PMR and GCA as a result.
You should contact the NE PMRGCAuk support group - they meet in Framwellgate Moor now.
Thank you so much for the info.
Pred shouldn't be dreaded! It's the only drug that works for pmr and to be totally honest most of us would rather live with some of the side effects of pred than the pain of pmr. It actually gives us back our lives even if a slightly different one.YBB
My Mum had polymyositis. Pred wrecked her bones—— mostly her spine—- she was in pain—- then her teeth went. Then she got breast cancer two years later. Her Rheumi said that 20%. Of his patients present with breast cancer within two years. Five years later she died. I am terrified!
Where was your mum looked after? I have to say - what a miserable sod. How encouraging - NOT!
We do have people on the forum who have also had BC - but some had it before PMR and there is absolutely no way that it is 20% of the community. And there is no evidence at all that apart from the first 6 months there is any increase in cancer diagnoses in PMR patients.The increase in that first 6 months is also due to the fact that PMR can be a symptom of some cancers (not usually BC though) and the PMR diagnosis is incorrect.
I am really sorry to be so pessimistic. I shall delete my post if you wish me to. I am 77 years old and frightened. My Mum did not have PMR. Perhaps that was the difference. She died 20 years ago perhaps people are more knowledgeable now.
I think this site is wonderful and you all give me hope.
She was at the Freeman.
Don't be silly - it is the rheumy I'm calling over. That is an appalling way to treat patients. And no wonder you are scared and upset.
PMR and pred is not a death sentence - as all of us here will testify. It can be a bit of a pain and you have to learn how to live with their downsides but there are upsides too - the wonderful community here and a great bunch local to you if you can get there. Where do you live? Not your address of course - just where relative to Newcastle.
I live nr Jesmond in Newcastle.
So the Freeman would be a walk in the park! But I promise you - QE has a better PMRGCA gtoup of rheumies.
The problem is I might not be able to get referred there.
We shall see. 1Brian’s reply has really given me such hope.
I feel better already!! I’ve asked a few questions in my reply to him, I would be grateful for your input
Thank you again for all your ongoing help and advice, I really am am truly grateful. Xxxx
In England you are supposed to have the choice for the first referral. Tell your GP you would prefer QE if that is where you want to go.
in reply to PMRpro
I had a New Referral Phone Call yesterday, where l was offered a Choice of Specialist within a 30mile Radius, so l could either go for the soonest appointment or for the hospital of my choice.
I’ve also had a Specialist Referral to an Orthopaedic Hospital & that went directly to them, however they did manage to book me in with the wrong chap but it was soon rectified.
Smokygirl in reply to
Thank you so much for the information.
It's such a shame you didn't appear here a bit sooner - they had Prof Sarah Mackie and Dr Saravanan speaking at the meeting today. If there were two people I'd recommend in a heartbeat it is them! Sarah is in Leeds and does research, Saravanan in at QE but I have just been assured by someone who knows that the entire group at QE know their PMR stuff. And the Freeman lags a long way behind.
You will kiss the dreaded Pred when it kicks in. Welcome to the site and the fount of all knowledge and comfort. X
Hi, I tried every alternative I could think of before succumbing to using 'pred' but upon starting it I was immediately 80% better.I started on 15mg and got his down in 10% intervals as quickly as I could without getting a 'flare-up'. Was probably on it for about a year and a half but eventually managed to do without which has been the case for say 9 months now without any major return of symptoms.
Oh that is brilliant and gives me hope. When I get my appointment with the Rheumy I am going to ask about starting on 13.5 mg. which is ,20 mg for every kg of my body weight. My own GP said 15mg and will not budge!
So far I haven’t started on Pred at all.
I find I am having days when I am in horrendous pain and stiffness and then, days when I am almost normal. Does this continue after you start Pred?
Also I find that food affects me——- sugary things kill me , as does stress but if life is going smoothly I am almost normal.
Thank you so much for your reassurance xxx
Hate to bring in a downer - but 1brian is male. Their journey is often very different from us ladies 
Try keeping a diary of what you eat or do and how you feel - often you can find a pattern and for many of us, not eating sugar and simple carbs does make a big difference.
Oh right! The opposite sex get away with so much!!
I do a diary anyway as I am a target member of Slimming World.
I shall add on to that, Thankyou.
What are your thoughts on the lower start dose? Has there been any info from the group on that?
Not always I hasten to add - but very often!
The recommended starting dose is the lowest effective dose in the range 12.5-25mg - if you start at the low end you may have to wriggle upwards and that takes time too.
I would accept the 15mg - for everyone it is a dose that is more than they are likely to need in the long run. Everyone is different in how they respond to pred: we all absorb different amounts, anything from 50 to 90% of the oral dose. We all have different disease activity so some need more than others, and and and ... You need a higher dose to find that improvement and then you find YOUR dose. It is quite likely you could reach that 13.5mg within a month anyway - but if it isn't enough for some reason you will take some time to identify that, then you will have to try more, It could take as long to work out what you need.
OK. I shall take your advice. Thank you again.
Another question. I have always walked a brisk mile every morning. Has anyone here tried the little weighted bolero jackets to help with their bones. Should I get one and do they help maintain bone strength?
Post it as a new thread - more people will see it. But HeronNS is your lady there. Here's a link to her story:
Lovely Dr. Walker now at North Tyneside general hospital
I was referred by GP to Dr Goff in Northumbria, but had the option of rheumatology at Newcastle or Northumberland. Good luck x
Thank you so much. It seems you can get referred to specialists who are quite far away from where you live. Thanks again for the info.
Theoretically, if you are happy to pay the cost of getting there, in England you can ask for referral to anywhere in England. Whether you will be accepted is another matter but you can always ask. That doesn't apply in Scotland or Wales.
Another question to my new guru! You mention to another person that you take yoghurt in the morning before pred and no omzaprazole. What sort of yoghurt ? Does it have to be live ? Can it be fat free?
Also my pain is much worse at night. Will the morning pred cover night time pain?
I don't - I'm on a variety of pred youtake at night but lots of people do. Most of us would say natural unsweetened (add your own flavouring to escape the evil sugar and additives!) and I personally use Greek yoghurt because it needs no sweetening and even fat-free is decent. But when you cut carbs when on pred, you don;t have to worry about fat-free,
Just like to tell my experience, just as part of the mix! I don't know how much difference there is in the experience of males and females.As far as diet goes I found that nothing made any difference except I did read something about b12 which is to be found in yeast extract. I'm not sure if this along with a very long hot summer had anything o do with me getting a lot better.
Not what you're looking for?
You may also like...
Rheumy wants to put me on Methotrexate- any advice?
He thinks that I need to start on Methotrexate so that I can cut down the pred. as it seems that I...
NEW RHEUMY STATES IM TO YOUNG HAVE PMR,NOW WHAT?
do welcome not having PMR so what is it ? I have been ruled out by oncologist, general...
My rheumy wants me off of prednisone as soon as possible
First of all, thanks to everyone who replied me, and gave me valuable advice on my previous post....
What kind of diet do you recommend as a PMR patient?
My mum is 88 with PMR and I want to advise her.
Crohn's, GCA and PMR...want to have my cataracts removed
