Hi all. I’ve recently moved from Kent to near Boston, Lincs and need to start looking for a suitable rheumatologist.
I have private insurance but it doesn’t seem to cover chronic conditions requiring monitoring so I’d prefer to use the NHS if I can. I’m happy to travel about an hour or so by car, so Lincoln, Peterborough, King’s Lynn - or even Boston!
I’d love to hear any suggestions based on good experiences. Thank you 😊
I fear that Lincolnshire is a bit of a desert for rheumies as far as previous experience has shown! But maybe I'm wrong!!
Welcome to Lincolnshire. I live in Woodhall Spa and have had PMR since 2019. Ive never seen a Rheumatologist all done through GP who more or less left me to do my own thing as regards reducinc pred ! Useless ! But last year we got a new health practitioner who is wonderful.. keeps check on me and makes sure my levels are ok and does regular blood tests etc. Having a flare at the moment so in daily contact re pred dose. However the more I read on this wonderful site the more I learn I’m not alone and try to keep calm about going up again. What will be will be. At the moment I’m on 5 mg but seems I might have to go back to 6 if pains dont settle. I hope all goes well with you. It would be nice if we could have a group in Lincolnshire as in some other parts of the country but I don’t know how to go about it.. take care..
Thanks Elmadon. It’s really great to hear you are in good hands with your health practitioner. I’ve signed on at a GP surgery and although I’ve not seen anyone other than the receptionist I’m getting a much improved vibe on my last place!
I like the idea of getting an informal group together, I wonder if there’s many of us lurking in Lincolnshire…!
"I wonder if there’s many of us lurking in Lincolnshire…!"
Put up a post and ask.
I would love to have a group in our area too as there are a few of us within easy travelling distance...Lincoln, Boston, Woodhall Spa, However, I don't drive any more, go everywhere by taxi, and have got bad knees and osteoarthritis on top of everything else so not terribly mobile. However, a monthly get together at our local Garden Centre, Woodthorpe, (look it up,) for a coffee morning or lunch, and a look at the flowers and plants, might be a possibility.
Hi Elmadon, PMRpro suggested that we open a second group called Lincolnshire PMR Support Group, which I duly did, and have had quite a bit of interest in. I hope you are still interested in having a get together, and I'm hoping you are still keen on the idea of a get together at Woodthorpe. Funnily enough the two people who have contacted me to say they are definitely coming are from a Facebook PMR group that I belong to, one from Stamford, one from Louth. So, if you can make it to Woodthorpe on the 15th of March I will be sitting in the restaurant at 12 pm wearing a bright purple Jacket and hoping you will also come along as it would be great to meet you. Pris80
I will be there. Can’t say what I’ll be wearing but I’m sure I’ll spot you. Thanks for organising. See you there.
😊👍
Hi, I live in Lincoln.
I had PMR for over 4 years and never saw a rheumatologist. I did have a phone consultation and at the time we were both happy to let my GP manage it.
I was on Prednisolone for around 4.5 years when I was diagnosed with large vessel vasculitis.
I am now seeing a rheumatologist at Lincoln county hospital.
She is a lovely lady but I am not confident that she has much experience with LVV, but although she is very approachable and listens to me when I see her, I would prefer someone who has experience with my condition.
I’m interested and hope you don’t mind me asking, what symptoms them to discover that you had LVV? Or was just by chance?
after struggling to reduce prednisolone I was feeling weak in the legs very fatigued and generally unwell. It was when I found I had no pulse pulse in my left arm that I was given a pet CT scan .
While waiting for the results I became very unwell. Sleeping all of the time. Unable to do basic things even struggling to get dressed and loss of appetite that I was admitted to hospital. There they checked the results of the pet CT scan and diagnosed LVV.
It seems I had had it for some months but the low dose of prednisolone had been keeping it at bay.
Gosh that sounds awful. The reason I asked is that I have a sneaking suspicion that I have undiagnosed LVV. The rheumatologist is convinced the symptoms are completely unrelated to PMR and has referred me to a neurologist! Neurologist disagrees with the rheumatologist , so in a game of ping-pong at the moment 🤦🏼♀️. I’m patiently going through the process of the investigations that the rheumatologist wants to make. Once she’s done her thing, I will wait and see what she says and will take a second opinion if necessary. Thank you for sharing.
It really does seem to be potluck. I can’t remember why the rheumatologist referred me for the PetCT scan but she herself was surprised when LVV was found.
I certainly didn’t suspect it because at the time I didn’t know there was a connection with PMR and LVV. Since my diagnosis I’ve realised that it’s relatively common for longstanding PMR to morph into LVV.
I was extremely lucky because I went to the gp and happened to see an excellent Locum. He thoroughly examined me and he immediately suspected some kind of vasculitis.
He referred me to the vascular clinic but told me to go straight to Boston Pilgrim Hospital if I deteriorated.
A few days later I was desperate and my husband took me to BPH and I was admitted the same day.
I’m sure if it hadn’t been for the locum things would have been very different.
I wish you good luck. It’s such a minefield.
Thank you. I’m glad you got yourself sorted. Sounds like very lucky.
HI Tappo, I am interested in starting a Lincolnshire PMR group. If you would like to join me, I will be at the Woodthorpe Garden center at 12 pm on Saturday the 15th of March. I'll be sitting at a table in the cafe wearing a purple jacket. Do come alonalong if you are interested.
Hello there. Just want to say most of the knowledge I have gained about PMR has been on this site. So good to hear others stories about this terrible thing. Often stops me worrying to know there are others like me.
welcome to Lincolnshire. I’m living in Sleaford, had pmr since 2017!! At the outset my doctor was great - then she transferred to Woodall Spa. Only seen a clinician once re this condition since but she did arrange a DEXA scan for me (which apparently should have been done at the outset) and pass me on to a doctor who had no idea so I just manage myself with the help of this wonderful site. I do think I now have the signs of osteoarthritis, but getting an appointment to clarify is like pulling hens teeth!! Good luck
I wonder if your GP is now at my surgery in Woodhall Spa. I haven’t seen a doctor face to face for years! Luckily we have a wonderful health practitioner who looks after me.
Dr Moran. She diagnosed immediately and because she was about to go on holiday, arranged a blood test within 10 mins. She got my results, called me and said she had arranged my prescription and written instructions would be waiting for me at the pharmacy. I saw her on her return from holiday to confirm I understood the condition and how to control pred etc. which I did, but she apparently moved some time later 🙁 hope you get to see her 🤞
Hi Elmadon, I've taken the bull by the horn. I will be at Woodthorpe Garden Center at 12pm on Saturday the 15th of March. I'll be sitting at a table in the cafe wearing a purple 💜 puffajacket. If you would like to join me I'd love to meet you. I've invited Baroness Betty too. Pris
HI Deyazlex. I am trying to get a Lincolnshire PMR group started. It may be a bit far for you to come, but I will be at Woodthorpe Garden on Saturday the 15th of March at 12pm. I will be sitting in the cafe wearing a purple jacket. Do come along if you are interested.
Hi Baroness Betty, (great name), and welcome from another person who moved to Lincolnshire.
We came to Lincolnshire in the 70s, which is a great county, famous for its big skies and amazing sunsets. Then we moved back down south, but came back 20 years ago.
I live in the small town of Alford, not far from Boston, and have had PMR for 9 years. I have never been referred to a Rheumatologist, and I believe there is a long waiting list to see one in our area. I have always managed with our local doctors surgery who have had a series of practitioners over the years, all with varied opinions about how PMR should be treated. I have learned more about my illness from this site than from any doctor, and at times have had to fight to get the amount of Prednisolone I need. Now having done a slow taper to 5 mg over six months I am sticking with this dose until I get my promised second knee replacement, and then might look at reducing further.
I hope you grow to love this county and enjoy your time here.
My rheumi is Dr Sharma based at Peterborough City Hospital. I see her once a year as I am on DL's slow taper and this group gives me confidence to manage the bumps along the way. I explained about the group and my tapering plan which she approved. I have to contact her shortly, ahead of my next appointment in May, when I get to 3mg of pred and she'll arrange a short synatchen test. I find her empathetic and approachable.
Dear SudsSuds, I am interested in starting a Lincolnshire PMR group. I don't know if it might be too far for you but I have suggested Woodthorpe Garden Centre as a place to meet. I will be there sitting at a table in the cafe at 12pm on the 15th of March, wearing a purple jacket. Pleas come along if you are interested.
Thank you to everyone for the lively Lincs natter. Like everyone else I really value the knowledge and support we all get here from fellow sufferers. Maybe I’ll wait to see what’s on offer at the GP surgery before worrying about a rheumy.
Meanwhile, shall we set up an informal group? I’m happy to coordinate (if I’m allowed to post an email address?) I can set us up either with email or WhatsApp, with a view to arranging a get together…
Set up a new group email address for yourself - then you don't need to advertise your personal one, which is discouraged. I think you can probably do it via PMRGCAuk Support Groups if you ask but you might not want to go that far just yet, up to you. You can do it via Chat on the forum for up to 10 particpants. Or put up a new post and ask for people to say they are interested and message them your contact details via Chat - because you need email and phone nos for WhatsApp.
Hi again Baroness Betty. I have taken the Bull by the horns! I will be at the Woodthorpe garden centre sitting at a table in the cafe at 12 pm on Saturday the15 th of March wearing a purple puffajacket . If you or any of the others would like to join me I'd love to meet you! Pris.
Have you replied to the others too? DL and I see everything because we follow every post, but many people never return to a thread to read later replies or "Save" a thread. Either reply to everyone individually so they get a notification (even that doesn't work if they haven't signed up for that) or start a new thread with a clear announcement!
And well done you - hope it turns into a date!
If you'd like to extend the invitation, then start a new post with "Lincolnshire lunch get together" or some such title and see who turns up. The charity will sort out an email address for you if you decide to become a support group. Our Yorkshire group started 8 years ago in a cafe in Ilkley! ....and we continue to meet in a cafe in Ilkley, as well as in Leeds, York and Sheffield!
There have been several new groups set up in the last year. You can request leaflets from charon@pmrgca.org.uk - putting a leaflet on the table or a back issue of NewsWire will identify you in the cafe, as well as your jacket! 👚
Have an enjoyable get together. 💜
I will be at the Woodthorpe Garden at 12pm on the 15th of March. I will be sitting at a table in the cafe wearing a purple jacket. I hope you will be able to join me. I thought I had already sent you this invitation, but now I can't find it, so sorry if you get this twice . I know you are suffering from a flare at the moment so you may not be able to come.
Elmadon and I have already started talking about this...you will see from my my reply to her what my suggestion was about a venue, and she is in favour of it. I would be happy if you were to organise it though, not my forte. Look it up and see what you think.The food at woodthorpe is super, well worth a visit, and about half an hour from Boston. if we all met there on a specific date, wearing something purple so we could recognise each other among the crowds, we could exchange emails then,
p.s. I also moved from Kent, where most of my family live.
Depending on whereabouts in Lincoln you are, hospitals in Nottingham might also be doable for you.
Hi Baroness Betty, I hope you are well. The meeting at Woodthorpe on the 15th of March is definitely going ahead. PMRpro suggested we start a separate page called Lincolnshire PMR Support Group which I duly did, and have had a few enquiries through that. Funnily enough the two people who are definitely coming contacted me through a Facebook PMR group that I belong to, one from Stamford, one from Louth. I think there may well be quite a lot of organisational and record keeping work to do which I know you said you would be happy to take on. I hope you will be feeling well enough to come along on the 15th. Pris80
Checking in: Rheumy diagnosis GCA
Rheumy Suggestions
First Rheumy visit.
Good rheumy in Northern California?
1st rheumy update
