I was diagnosed in oct 18 with pmr and referred to rheumy at the same time. I saw rheumy today and can only say I must have been extremely lucky to get him. He was happy with gp's diagnosis and his treatment. He was also happy with the taper he had recommended but changed it slightly to an even slower taper!! He was extremely strict about watching my diet (guess my relationship with the fridge is iver) and even mentioned that he had to take steroids and hadn't been too good with his diet and now had to take tablets for diabetes. He's given me an open appointment so that if I have problems I can just ring his secretary and I will be fitted into his clinic. His opinion is that as long as I am happy he doesn't need to see me and if I am not happy he needs to see me not the gp. Thanks to Blearyeyed who has helped me with what to expect and what to ask for at my appt. The picture is of my grandson learning to skate.
1st rheumy appt.: I was diagnosed in oct 18 with... - PMRGCAuk
1st rheumy appt.
That sounds like good news, I'm so pleased for you! And a rheumy who really knows what it's like to take steroids.
I think most of us are fighting that relationship with the fridge, I know I am.
Best put your ears away until Easter, and then allow yourself a holiday nibble! Take care xx
I have had to replace my chocolate ears so many times the local sweet shop has a deal with Cadburys!!
Who is it? He sounds a treasure!!!
And PS - forgot to say - a doctor who knows what taking pred really is like!!!!!!
Yes let us know who it is as so many of us need to find a good Rheumy!
I.assume he is also available privately as.well. our local Nuffield health seems to be where most of our consultants go for private work so if anyone wants to see the guy privately that might be where to start.
This gods name is Mr Menon and he's based at St Richards. And guess what ?the average of 60/70 is total rubbish apparently because a great number of his patients are low 50's He was really good and acknowledged being strict with diet is really hard. That was the only thing he insisted was important in all of this other than doing a proper taper. He reckons that taking the taper at his rate will take well over a year if nothing goes wrong and he prefers that a taper is taken slowly and doesn't yo yo up and down because it is discouraging to the patient. I have been really lucky with not only my consultant but my gp as well.xx
Wonderful - persuade him to write a paper...
Will email him suggesting it especially as he has had steroid use experience himself and he has acknowledged that one is affecting younger people than most rheumys seem to think is possible
Whereabouts are you please. Country I mean
I am in the UK.
What advice did he give about diet exactly?
No chocolate, sugar, fruit juice, jams, crisps, biscuits Lots of veg, fruit, use canderel or other sugar replacement
Basically he wanted me to cut as much sugar out as possible. I am sure pmrpro and Dorsetlady have.posted on diet somewhere on the site. For me cutting out chocolate is the hardest part, but will definitely give ot agox
Thanks! I have done this...except I still have one square of very dark chocolate and a glass of grapefruit juice.
Watch the juice as I was told yesterday fruit juice is loaded with sugarxx
He sounds wonderful, and the fact that he has taken steroids too! You've won a watch there. Lovely pic of your grandson too
Was going to say: he looks a bit young for a Medic (but then I read-on further..) 
Sounds like you have a Gem of a Rheumy - look after him!
MB
Oh I am definitely keeping this one close.x
Hi.
Can endorse everything you have said about your Rheumy. Saw him for the first time four months ago and am due for next appt this comming Tuesday at Bognor.
He was very good. I did go in expecting to fight for everything and didn't have a thing to moan about at all.
Chained up in the shed with the crocodile so we can all come and visit him !😂😂😂
That bloody crocodile is to blame for everything wrong in my life!! It deserved being deflated. Can you imagine going into the shed and been greeted by a 6ft crocodile every time. It just sits there staring at me!! Even the cat hates the thing.
Thought garden sheds were husband's territory?
Our shed is normally inhabited by OH but as the crocodile took for ever to inflate last summer we decided to leave him up and shove him in the shed. Trouble is the bird food is in there plus plant pots so I have had to wander down there a few times. The neighbour start to shake when the shed is open and they can see the damn thing after last year's antics!
Definitely a keeper.
I have been very lucky.x
They start them young now Mark.
Just like Police Officers...?
They do seem very young. My SIL was 30 last year.andmy daughter organised a party and the guests were either police or re-enactors and I can honestly say the police all looked about 15! Unfortunate they also acted like 15 year olds and drank the bar dry whilst .competing with the re-enactors to drink as many shots as they could!!
Hang onto him for ear life!
Lovely photo of your Grandson.
I did wonder if they would give me a penguin if i went and I was told in no uncertain terms by grandson and daughter I would not be with them if I did have a penguin!!
They are no fun , we all had a go , have a picture of my whole family from about five years ago in a line with penguins between us , must find it!
Pre PMR/ GCA !! Told you I should never be let out in public! 😋🐧🐧🐧
I would probably have collapsed laughing if I had seen you all with a penguin. Youngest and her mad partner would probably have allowed me a penguin and joined in but there is no way eldest and grandson would have been any where near me.!!
😂I can just picture the look on their faces if you appeared with a penguin 🐧
It would be stunned at least!
Stunned would be an understatement with my family. They would run a mile in different directions😆
Love the penguin. In Amsterdam at Christmas learners held onto the back of a wooden chair on the ice-rink. I could never skate but suppose the chairs handy if you need a rest!!
I can only skate in a forwards direction, if I need to stop I hurtle towards the barriers. A chair.would be very usefulxx
My thoughts exactly.
If we fell over there would be no getting us back up without a crane to hoist us off the rink. Think i will stay on dry land thanksx
Ditto...x
How wonderful!! Love to read posts such as yours outlining positive connection and treatment with your doctor. Imagine being able to talk about pred tapering with your Dr who “gets it”. This collaborative relationship will serve you well moving forward.
Your grandson is a cutey-pie. Great he’s learning to skate. Maybe he’ll grow up to play hockey and travel to Canada.
Apparently he is going to be a fireman like grandad, a policeman like daddy or a soldier!! His.mummy does not like any of those options for her precious son!! I did suggest he became a barrister like nanny and was told he didn't know enough information to be one!! I am sure there is a compliment somewhere in there!!
Exactly , he knows who has all the Smartz in your family , even with Pred Head!! xx
I feel guilty that I have been so lucky to get a decent gp and then a rheumatologist as well. I was dreading the appointment after the horror stories on the forum. I just wish everyone could have the samexx
Oh you loopy fool!!
Don't feel guilty for getting the help you deserve , you are giving us all hope for the future you barmpot!
We are all looking at your experience and are really glad that things are getting smoother for some. Oh , and booking tickets by the bucket load to Bognor!!!😝
I know it's illogical and it's all governed by our post codes essentially but it doesn't stop you wishing every one could have the same.xx
We could work on him to share his info with his colleagues - they won't listen to us but they might listen to other docs. I was part of a go-to-meeting discussion about the criteria for assessing success of treatment for PMR the other night and we got onto talking about the dissemination of knowledge to other medics...
He is definitely one of the ways forward with getting doctors more educated over pmr. It's fine these doctors saying how we.should.do certain things whilst on the pred and giving ridiculous tapering plans but they have no idea what its like
In reality. My rheumy was more interested in my diet than tapering which was fine by me. Diet I can manage doing a silly taper I can't. After your post yesterday I am emailing him to ask if there is anything he can do about education amongst other rheumies and gp's. Will let you know what he says.x
Well you could always to to Butlins! It used to be a dump but its apparently got better since building hotels. But I dont live in Bognor!!
Butlins!! Don't you think I have been through enough. Bognor was mentioned as a spot we might be able to catch and kidnap your Rheumy , so I might have to go and search him out there , after I recover from my near ' death by dustbin' !!😋
I refuse to encourage you in your stupid antics with a bloody wheelie bin. You shouldnt have been outside at 4am let alone fighting with inanimate objects.
Yes consultant has a clinic in bognor. He appears to have two open clinics as well but not sure how this works. He is also definitely at Nuffield doing private.
He's worked out that mummy and grandad are the soft touches, daddy and nanny are stricter and need to be treat different!! He's obviously worked it out, cheeky little sod. There is also a difference between aunt and uncle, with uncle being the stricter one but uncle is also the one who will buy him games for his switch snd Xbox so he needs to be extra well behaved for him. He doesn't need any help from nanny, he's doing fine in his own!!
He's learning fast - one step ahead of the game already - he'd make a good Barrister!
Apparently he doesn't know enough to be a barrister!! He's going to be one of these, fireman, Police nan or a soldier!! His mum is not impressed with any of them!!
Oh yes he does!!
I am not altogether sure whether he thinks i know a lot and he can't be bothered to learn stuff or whethet he is thinks he is too clever!! He got a guitar some months ago (need to speak to grandad about appropriate presents) which he has spent hours plucking and strumming. I innocently suggested I would look out for a teacher for him and I was told in no uncertain term that he didn't need one as he could play already and then proceeded to make a god unearthly noise just to prove his point. Even better than this is is in his year group they learn to play the recorder en masse!
OMG the recorder - can hear it from here! Your grandson reminds me so much of our youngest son, so matter of fact - at 7 years old he had a transistor radio bought one christmas and I found him with it in pieces on his bed - scolded him for 'breaking' it. He said he only wanted to know how it worked and put it back together - working perfectly - he couldn't understand my panic. As he got older he built his own computer and there's little he doesn't know - not his trade just a past time and self taught. Photography is another. Some just have that intuitive nature but do need the brain to go with it - sounds very much like you have that with yours - nurture it... and funnily enough my son played the guitar, without lessons, was in a band many years ago - still loves his music - he often asks me what music I enjoy listening to and the next thing he's burnt me another CD for the car! These are only hobbies.
He has already started taking things apart to see how they work. He adores lego and building kits. Strange you mention photography as my father in law was a professional photographer and out of his 4 children only OH had the same talent. Our oldest didn't acquire the talent but youngest daughter seems to have and is really quite good. Our grandson has a camera and he seems to be following in the footsteps. Isnt it strange how our children get their talents, sometime seemingly from nowhere. Its so much easier to watch our grandson growing than it was our daughters as we can do it from a different view point. We are loving itxxx
Lovely. They can come from way back too. Think there are hidden talents in us all but we don’t always believe in ourselves enough to do anything about them. I never had the opportunity - too many kids, not enough money. It was something special in him. The best thing too is he has such a nice personality no show or anything - can mix with the best - if he chooses! You have something special there tooI believe.
Not just an academic genius then , I am liking this young man more by the day! xxx
So pleased for you .
The perfect outcome from your appointment, I think we will all be moving to your area to meet your Rheumy too.
Can't stress how happy I am that you have found such a supportive unit of medics to help you in your recovery.
And now you can feel free of any even minor anxiety about how you will be treated in the future. It's a great feeling to have you diagnosis and treatment secured.
Hugs Bee x
That’s great for you. To find a great doctor
Hi
So pleased for you. My rheumy kicked me into touch once she knew I had fibromyalgia, I would like my go to send me to see a rheumy (hopefully not that one) to see if I have pmr. Love and hugs Lynne xxxx
Has your gp diagnosed pmr? Or is everyone just blaming the fibromyalgia? You need to see someone who can say its either, or, both. X
No, she hasn't. I was there this morning but there wasn't time to discuss it, as I needed her to sort out my foot, leg, bum and back pain. She said it's sciatica!! Hope you are ok. Love and hugs Lynne xxxx
Oh well fingers crossed it's sciatica but if you don't get any relief you need her to start looking for whatever it could be.
Thank you. I just seem to be getting one thing after another!!! Xxxx
Hi, I was diagnosed August 2018. Glad you found a dr you like! Struggling with side effects of the steroids!! How slow of a steroid taper does your good dr suggest?
Thanks, Roxy
He has me alternating 15mg to 12.5mg for 6 weeks gradually building up the days of 12.5mg. The same applies to 12.5mg to 10mg. After I reach the magic 10mg he wants me to do 1mg every 4/6 weeks. If needed I can drop this to 0.5mg per 6 weeks depending on how I feel. Like he said it will take over a year even without any hiccups but he finds it more successful. Hope it's of help with your taper
So pleased for you. I'm due to see my rheumy for the first time, next month. She is the one my physio recommended seeing if I could, and it's just luck that I've got an appointment with her. So I'm hoping she is as good as my physio says. I'll be posting on here when I've been. Hope I'm as lucky as you Yellowbluebell. Good luck with the tapering by the way. What are you on now?
That’s great news Yellowbluebell. I agree with PMRpro, ask him to write a paper. We need consultants like yours to help nudge others stuck with misconceptions. By the way, a friend of mine had an emergency op at St Richards recently and said the care was fantastic. So good to hear positive stories about NHS.
I’ve got no complaints about my Rheumatologist, although I see the Registrar, not the consultant. However, the letter he sent to my GP was riddled with typos and the GP it was addressed to retired a couple of years ago, wasn’t the one who referred me, or the one in the practice I’ve ever been registered with, so goodness knows who will read it, if anyone does. Certainly not joined up healthcare here!!
Hope everything goes well with your taper and the fridge door stops winking at you 😜. Damm that Easter Bunny!!! Xx
Might have to break the chocolate ban for a day or two over easter!x
👍🏼 🐇 🍫 xx
How lovely and encouraging- so pleased for you!
The taper off the preds does seem to be the problem - I have been given a half tablet which seems to have helped
As.i am only just starting my taper there are others on the forum like dorsetlady and pmrpro who can help with taper plans. I am.sure i have read somewhere that even a half tablet can make a difference when tapering.xx
Don't understand what you mean "I have been given a half tablet"?
Its a two and a half mg so can cut down in lower amounts
Is there a 2.5mg? I hadnt realised there was. Rheumy said about 1mg tabs but not 2.5
medicines.org.uk/emc/produc...
if you want plain pred. Enteric coated has always been available as a 2.5mg (brown) tablet, 5mg (red) and now a 1mg (yellow) form.
Thanks mine are just standard ones and in just cut 5mg in half. Once at 10 doctor will.prescribe 1mgx
It is a plain pred tablet? I'd rather have 1mg than cut a 2.5mg tablet twice.
Still on 27 and a half mg so not thinking about 1 mg yet
So pleased for you! I was diagnosed in Dec18 and put on 20 mg Pred, reduced to 15 mg after a week but up to 17.5 mg after a month for 2 weeks and now on 15 mg again. I’m seeing Rheumy next week and would like to know more about your slow taper. Also your diet - what is he advising?
Looks like the housing market in Bognor is going to flourish!
See my response on the diet below and also noosat has posted a healthy diet as well. The big thing is cutting the sugar.from the diet.x
Keep a watch on calories as preds increase appetite
It is carbs that matter much more than calories.
He sounds a treasure!! Hang onto him !! Xx
On the walk from the station to Chichester Theatre I have often looked in the estate agents' windows - wondering if I could afford to move there. Well, closer to there than South London, anyway! I will look more carefully next time I'm there because your and your GP sounds as if they would be worth moving for.
To be honest i think I would considering moving as well after hearing everyone's stories of useless rheumysx
That should have been 'Your rheumy and your GP'.
Fantastic ,what a positive experience .Well done that Rheumy !
FANTASTIC
I'm jealous - I want one like him, Good luck xxx
Good diet! As little processed food as possible. NO SUGAR, which is a leading cause of inflammation. Lots of organic veg. and fruit. If you cannot get organic, frozen is next best as it has been washed multiple times before freezing. Walnuts and others are good in diet. I just had a Bay's English muffin with a scraping of butter and vegemite for breakfast. The muffin my one daily processed food weakness. Lunch will be a large green salad with nuts maybe a little chicken. Dinner to-night, not sure, probably some soup or scrambled eggs. A treat could be a piece of dark chocolate at least 70% or yogurt with pineapple. Hope you do very well with this physician. 
This.looks great, thanks. The one thing rheumy said was important in this journey was eradicating sugar. I am very weak willed so this is going to be a very bumpy ride!x
you are lucky finding this rheumy. Would it be an idea to make a evaluation list for all gps and specialists, specially the ones working in the uk? You can go to the most suitable one straight away. Hope you get used to the low carb soon.
I doubt I will ever get used to low carb, it's a form or torture for someone who was a size 8 and ate what they wanted.
It's a good idea to have an idea.of where the good rheumys are but not sure how it would work on the forum. If you can think of a.way to do it I am sure.people would love a list.xx
In Holland we have this care map zorgkaartnederland.nl sorry in Dutch where you can red about the experiences of Dr. and the quality of the contact and so on. It must take a lot of time to put it up. in the UK as well or perhaps it exists already. Poor you about the way of eating, I needed some weight loss anyway.
Clone him! In 13 years GCA, never saw a Rheumy, but had an outstanding Neuro. I received a birthday card this week, which said;I followed my heart....and it led me to the fridge!!!!!!!! Lovely pic of your grandson. x
Hi You must be nearish to me I was being looked after by Dr Menon I live in Petersfield- was diagnosed last June!!how much Red are you on at the moment??
Alternating between 15mg and 12.5 for the next few weeks. I am in chichesterxx
I was yo young last year and had to go back to 15mg but now got down to 7mg using a very slow taper!good luck- I liked Mr Menon but am with another good rheumy in Guildford as I work there
Sounds good to me Yellowbluebell I have a good Doc too see him every 4 weeks and he will explain all I ask him until I finally grasp what he says . I see specialist in 2 weeks time hope they are as patient and helpful as he is we need all the help we can get with this illness best wishes to you 😊😊
I am glad you have a good gp as well. Hope your specialist is good as well. Keep us up to date xx
This Rhemy sounds terrific. Mine is too but I wish I had known I was at risk of diabetes. You are forewarned so can work around it. Do you have regular blood tests?
I don't have diabeties so I don't have blood tests. My rheumy has diabetes brought on by his diet whilst taking steroids. If you think you have diabeties see your gp who can arrange tests.xx
All of us on pred are at risk of steroid-induced diabetes and all of us should be looking at minimising the risk with diet. And we should have regular blood tests - every 6 months is probably enough unless anything starts to change and then more often makes sense.
Thanks. I assumed as long as I had no signs I was ok to not have blood tests. I will now ask for bloods to be done in march. Is it easy to go from being ok to diabetes in a short time?
Not usually - you would usually note the Hba1c starting to rise from where it was at diagnosis. As long as it remained stable infrequent checks would be fine but any rise should be a prod to look at your diet, not really any more. Restricting carbs is often enough to keep it in check and some people have had Hba1c levels at high pre-diabetic levels, have cut carbs and got it back down again.
Thanks. Will start reducing the carbs as rheumy ordered and will have a check on bloods in March which will be 6 months from diagnosis.x
Time now o reduce my carbs then. It’slike my body’s craving them though
It does - once you cut them a lot the craving usually fades. Once the peaks and troughs of blood sugar level are evened out, the cravings should improve.
Starting today. Thanks.
I have the feeling giving up carbs is going to be one long battle for me. Any suggestions what to replace carbs with?
Other food... ?????
But what do you want to replace? I don't replace/substitute, I eat differently.
You can eat all the above ground veggies you like, some below ground ones (not potatoes, parsnips etc), Restrict fruit - lots of sugar even if it is called "healthy" so counts for carbs for weight control and BS if you eat the wrong ones. EAt whole fruit if you do and no fruit juices.
verywellhealth.com/fruits-t...
This site is a really good introduction and has easy to remember images showing what is high carb and what is not plus ideas for recipes.
You can get loads of info without paying...
Once you start to reduce the sugars you will also find your taste changes over time and you will start to find things too sweet. Some people find that they then find the PMR improves because of the reduced sugar intake and they feel it when they lapse. Think positively - "I will feel better".
Thanks. I ave never had to watch what i eat and although I eat lots of fruit and veg I also like potatoes and bread. My biggest prob is sugat but rheumy did say about stuff like stevia. Hopefully like you say in will find things too sweet once i cut down.xx
Careful with artificial sweetener - because it makes food taste sweet it can cause the body to release insulin anyway as a reflex action. There is less sugar available for it to work on so then there is excess insulin floating around - and that is what leads to insulin resistance.
Don't try to do it all at once, try to restrict the sugar so things slowly become less sweet and you will miss it less. And instead of "white" carbs, use wholegrain flour and brown rice and so on. Cut down on the portion size too - don't suddenly try to eat loads less. If you think you are hungry - have a drink FIRST and go away and find something to do for 1/4 of an hour by which time you may have forgotten. Often we aren't hungry but thirsty I found using the 5:2 diet helped adjust portion size.!
What a happy post - great for you! Lovely picture - reminds me of my own children when they started skating (many years ago) though then they didn't have such a fun helper.
I want to.have a penguin helper but apparently i am too old!!
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