Private consultations

[Alwynk]

Hi, does anyone know if it is possible to see either Prof Dasgupta or Dr. Sarah Mackie for a private appointment, and if so, how do l go about it please? I’ve scrolled the internet endlessly but without any success. Many thanks everybody

[jinasc]

Dr Sarah Mackie does not do private appointments. The Professor does, located in Southend Hospital. Where do you live?

I notice you are just 18 months into your journey - do you have a specific problem with GCA,

[Alwynk in reply to jinasc]

Thank you for the info, shame he’s so far away. I live in York and l always got the impression he was based in Leeds, How wrong can l be? So l had better start looking for someone nearer my home. Actually jinascl’ve had GCA for much longer than 18 months, was diagnosed in early 2018 but it’s the PMR that’s causing me the problems. My GP cannot decide whether l have it or not because the pain and stiffness l get is always in my legs, ever in the arms, shoulders etc. I have asked him about seeing a rheumatologist for months but he has just shrugged it off and said he was looking after me (!!) However today l said l was going to go private to see a rheumy hence me trying to see the Prof or Sarah. Fingers crossed l will find someone good in or near York Thank yiu

[Predsharer in reply to Alwynk]

I can’t help with rheumatologist recommendations, but I can identify with your symptoms of PMR. I had lower back pain and some pain in my hips, but mostly the pain and stiffness was in my legs, knees, ankles and feet. After two months of suffering with no diagnosis I couldn’t walk hardly, get downstairs, into a car, the bath etc. My GP was reluctant to give me Prednisolone, but referred me to a Rheumatologist privately (because the wait was six months for an NHS appointment). He said immediately that it was PMR, prescribed Prednisolone and within hours I was fine. I now see an NHS rheumatologist who agrees that it is PMR. I think your doctor is not looking after you at all, if you are not feeling confident in his diagnosis and treatment. I would advice that you insist on seeing a local rheumatologist. If you have responded to Prednisolone then the diagnosis is almost secondary to the outcome. You need some reassurance that you are on the right path.

[Alwynk in reply to Predsharer]

Thank you for your reply, it’s good to know there are others with the same leg pain who have PMR. My gp has always dithered about the diagnosis. He was correct about the GCA but never about the PMR solely because the pain and stiffness is always in my legs and never anywhere else. This has been going on for nearly 4 years. For the past 2 years l have been very slowly reducing Preds and was down to 3mgs, this was because he said my CRP blood tests were permanently reading at 8 which meant my disease was over and that l should reduce to zero asap and that the leg pains were steroid reduction pains. I got as far as 3mgs in a lot if pain, could barely walk, going upstairs was agony, totally fatigued and miserable. Then 10 days ago l had a big flare, was put back on 10mgs and to stay on them for a month. Just admit l feel loads better and my legs are at least 50% better, Told GP that as a result of this l intend to see a rheumy whether he likes it or not and am now actively searching for a private consultation within a reasonably nearby area. Have found 2 so far and am awaiting replies.

[PMRpro Ambassador in reply to Alwynk]

You would think it was simple enough to understand that as long as the patient is on an adequate dose of pred OF COURSE the CRP won't rise. It doesn't show the cause of the PMR is no longer active, it shows the patient is on enough pred to manage the inflammation. It is there being inflammation at a high enough level and for long enough that triggers the liver to produce the proteins that make the CRP and ESR numbers go up. I do worry about what biochem/physiology/pharmacology they learn at med school.

[Alwynk in reply to PMRpro]

Until now and your explanation l didn’t really understand CRP, it was just a monthly blood test. But now ……. l find it worrying that my GP doesn’t or didn’t know fully what the test results mean. I suppose the answer is in GP General Practitioner isn’t it. Knows a little about a lot . Even more determined now to find a good rheumy. Thank you

[PMRpro Ambassador in reply to Alwynk]

Beware - there are rheumies who think a normal CRP means the PMR has gone away too!

[Alwynk in reply to PMRpro]

Thanks to you PMRpro at least l know what to look out for. Very grateful

[jarn in reply to Alwynk]

PMR affected my hips/thighs and they felt like big logs plodding; no pain but felt that it might be aging. So, yes.. it definitely can affect the lower body.

[Alwynk in reply to jarn]

Thank you jarn

[PMRpro Ambassador]

As far as I know Sarah Mackie does no private work - she is only part time NHS as she has a heavy research workload. I believe Prof Dasgupta does have a private practice.

Another option for a private consultation who I would recommend is Dr Rod Hughes in Chertsey - he also does NHS work and will add patients to his NHS list if he feels it is appropriate. He listens and includes the patient in management - a rare find.

drrahughesrheumatologyltd.com/

[Alwynk in reply to PMRpro]

Thank you PMRpro, he sounds wonderful, but again it’s a long way from York, pity he wasn’t a bit closer. Thanks once again tho.

[PMRpro Ambassador in reply to Alwynk]

Probably as easy to get at as Dasgupta. And more approachable IMHO.

[Alwynk in reply to PMRpro]

Sounds so tempting PMRpro, if only l wasn’t so housebound. My 83 year old OH is in a fragile state with Cardiac problems and first stage dementia and l can’t leave him for long. An appointment in Leeds would be do-able but not much further. Ho hum, l will just have to look nearer to home. Thank you though for your suggestion .

[PMRpro Ambassador in reply to Alwynk]

I only suggested him as you mentioned Dasgupta - who is also London area.

[RoadTrip in reply to Alwynk]

Rod Hughes was happy to do telephone appointments with me.

[Alwynk in reply to RoadTrip]

It can’t harm for me to give him a ring and see if he will take me on can it ? Thanks for that, RoadTrip

[RoadTrip in reply to Alwynk]

Worth a go. My phone consultations were back end of last year. 👍

[piglette]

This is the link for Prof Dasgupta at the London Clinic thelondonclinic.co.uk/consu...

And at Spire Health

spirehealthcare.com/consult...

[Alwynk in reply to piglette]

Spire health looks interesting, will give that a try, thank you piglette

[Kendrew]

I have seen Prof Dasgupta both privately and now as an NHS patient. He is retiring from his NHS practice but still keeping his private patients...don't know if he'll be taking any new private patients on under the circumstances though, but worth a try.

[123-go in reply to Kendrew]

Hi Kendrew. Have you any idea who is replacing the Prof? Perhaps no one!

[Kendrew in reply to 123-go]

Sorry, I'm afraid I don't. I discovered the Prof was leaving from the organiser of my Chelmsford/Southend PMRGCAuk support group but no other details were given. All I know is that significant people involved with his team and on his team are meeting tomorrow to discuss how the 'department' will move forward and how it will operate.

If I get any more info, I'll post it.

[123-go in reply to Kendrew]

Thanks Kendrew. I'd heard rumours that he was retiring and he confirmed that at my last clinic appointment. It still came as a shock though. I didn't like to ask if anyone would be replacing him-would have been in bad taste!

[PMRpro Ambassador in reply to 123-go]

Give the man a break - he's the same age as me!!!! Vintage 1952

[123-go in reply to PMRpro]

He certainly deserves his retirement. There's no denying his hard work in the field of PMR/GCA.

[Canarylady in reply to Kendrew]

Good morning Kendrew,

Hope you are keeping well and safe.

I m trying to get hold of the prof too.

I shall call his secretary.

Since I m back up in Suffolk,do you know if there s a group around my area?

I m not too sure where your based,I m near Sudbury,i m having terrible flare ups,I m still on 10mg of pred!just can’t get any lower at the moment,I m under a lot of stress,due to my mum being in ICU for the past 3 wks and I m working long hrs.

Sorry to go on.

Take care

Ruth

[123-go in reply to Canarylady]

This may help

infolink.suffolk.gov.uk/kb5...

My sister lives in Sudbury 🙂.

[Canarylady in reply to 123-go]

Good morning 123~goThank you so much for the link.

Do you get to see your sister?

😁

[123-go in reply to Canarylady]

I haven't seen her for over a year! It's quite a long drive for my husband (80): can take up to two hours depending on traffic and prostate issues are a problem 😏. I've driven only very short distances over the last few years due to one thing and another and for her to drive to us is difficult. Thank goodness for technology!

[Hirondelle in reply to Canarylady]

Hello Canarylady I live in Suffolk too and saw a private rheumatologist last month for the first time as I needed help . A bit far for you maybe but Dr Anita Weerakoon at Nuffield Ipswich was very helpful and nice. I hope you find someone. Good luck.

[Canarylady in reply to Hirondelle]

Hello Hirondelle.

Thank you so much for getting in touch with me regarding a rheumatologist at Nuffield,it’s not too far for me to get to,so I shall give them a call.

Thank you so much.

Will let you know how I get on.

Take care

Ruth

[Hirondelle in reply to Canarylady]

Thank you for getting back. Yes please keep in touch and let me know what happens. If I knew how to private message, I would send my name and phone number so that we could keep each other’s spirits up. And I do hope your mum gets better.

[PMRpro Ambassador in reply to Hirondelle]

Click on Canarylady's name and her profile page will come up. On the top right corner you will see a box with Message in it - click that and a page comes up where you write just like a reply on the forum but only she can see it.

[Hirondelle in reply to PMRpro]

Thank you as usual, dear PMRpro. Just one question for you please, I have to have a gastroscope with sedation next Tuesday - should I up my steroids? I’m on 5mg.

[PMRpro Ambassador in reply to Hirondelle]

I wouldn't - unless you get VERY uptight about such things. Have you asked the medical team? Maybe take some extra pred with you just in case but it is quite a simple procedure.

[Hirondelle in reply to PMRpro]

Thank you, just what I thought but grateful for your advice. The medical team wouldn’t know- I had an hour and a half call from the pre op team nurse yesterday and she didn’t know that steroids went with PMR. I also have to take them sometimes when asthma out of control but 40mg rather than 5mg.

[PMRpro Ambassador in reply to Hirondelle]

Oh I think the medical team would know - certainly should. Doesn't surprise me that a nurse working from a sheet didn't know - but if it is done under sedation I would expect an anaesthetist to be around. And THEY will know about long term corticosteroid patient's needs.

[Hirondelle in reply to PMRpro]

I will find out on Friday if there will be an anaesthetist when I have to have pre ECG, (and MRSA as I visit my husband in his nursing home). And PCR of course. Then self isolate till Tuesday.

[Kendrew in reply to Canarylady]

Good Morning Ruth.I'm doing fine thankyou.

I'm based just outside of Colchester... so virtually on Suffolk border....and visit Sudbury from time to time. Lovely place.

There's a group meets in Woodbridge in Suffolk. The address is:

Dobbie's Garden Centre, Grundisburgh Rd,

IP13 6HX

Contact:

[e-mail]

Tel: [phone]

I'm so sorry you're experiencing such a stressful time. Having your mum so poorly and working full time.....that's going to be really tough, with or without PMR!

I can't advise you what to do medically (although others may be able to offer some further insights regarding dosages of pred, etc) but it does seem clear to me that you maybe need to consider having a chat with your GP about taking some long term sick leave if you can, or at the very least, reducing your work hours. Working under these circumstances will be extremely challenging and much more difficult for you to do what you need to do for your mum and manage your condition effectively. I'm sure you know this already and I fully understand that making the necessary changes is not always easy....but it does always help!

Unfortunately, things are unlikely to improve much if you don't make the necessary changes...as I discovered myself! My health is now much improved, and although difficult at the time, I'm now reaping the rewards.

All I'm saying is....just think about what changes you can make. None of them will be easy choices but even small changes can make a big difference!

[Canarylady in reply to Kendrew]

Hello Kendrew,

I will be in touch over the weekend as very busy at work

Kind regards

Ruth

[PMRpro Ambassador in reply to Canarylady]

Accept the dose you need with all that is going on - I have been in a constant flare of PMR for the last 2+ years because of my husband having been ill. It is an ill wind that blows no-one any good - since his death the PMR feels different and I have already been able to reduce the pred dose a bit from the 19mg I had reached at the end. Don't underestimate the role of stress.

And to be very honest, I wouldn't choose Prof D for PMR management. He is very good for GCA but PMR is a bit different.

[Kendrew in reply to PMRpro]

I have to agree with you. I have no experience of his treatment of GCA but certainly my PMR has not been managed at all in the way he's advocated in his tutorials and webinars!.....Very fast dose reductions, many other meds suggested without any investigations or evidence to support the requirement and even quite a dismissive attitude at times. I'm sure others will have had a much more positive experience though...I'm just one patient out of many!

[PMRpro Ambassador in reply to Kendrew]

You are - but there are a few patients who have reported similar experiences. You're right - it doesn't match his more public utterances. I don't like that - his colleagues would probably call it out, the patient isn't in as good a position - as you well know!

[Helipad in reply to Kendrew]

Even though the Prof is not my favourite person it’s disconcerting to hear he’s retiring especially as my 1 year being on Tocilizumab is looming .

[Kendrew in reply to Helipad]

This could be an opportunity though for someone with even more enthusiasm and desire to improve treatment for our condition to join the team. Who knows...we might be very pleasantly surprised! I know yesterday's meeting was to discuss how the department would take things forward with regard to staffing, organisation, clinical practice and current or new protocols. Fingers crossed.

[Telian in reply to Kendrew]

I use to go to the Chelmsford/Southend support group meetings up until moving 2 years ago. Wondered if you were attending then!

[Kendrew in reply to Telian]

I only managed to attend one before lockdown and that was at end of march 2020. Were you at that one? Would be funny if our paths had crossed!

[Telian in reply to Kendrew]

No, we moved October 2019 so my last one would have been summer of that year (I attended both Southend and Chelmsford) if you only attended one in 2020 then not possible.

[Telian in reply to Kendrew]

Tha last time I saw Prof D he said he was ‘getting to old for this now’. So he meant it then! So he’s keeping his private practice. Wonder if Madeleine ( his nurse specialist) will stay.

[Kendrew in reply to Telian]

She never saw any of his private patients but she was at the meeting on Tues, so hopefully she'll be part of whatever the new set up is! I guess we'll find out next Tues!

[Telian in reply to Kendrew]

Change makes us apprehensive but it’s happening and hopefully it will be for the better. Madeleine will be feeling it more than anybody.

[Alwynk]

Thank you for that information Kendrew.

[Gin13]

Hi Alwynk, there were problems getting my diagnosis because I was told PMR doesn’t go past the hips and I was completely debilitated almost overnight. I’m 62 skied, played golf, marathon on 55th birthday and now I can barely walk 100 metres.I originally asked if I had Rheumatoid Arthritis (because my Mum did), told definitely not. PMR was ruled out because I still had pain whilst on steroids. After 10 long months of numerous blood tests, X-rays and scans I got my diagnosis last month after a PET scan, I have Polymyalgia onset Rheumatoid Arthritis. I have pain everywhere apart from my feet, even in my rib cage, my knees particularly bad. I actually had more faith in the young Registrar than the aging (past retirement age) established consultant.Good luck with getting your diagnosis.

[Alwynk in reply to Gin13]

Thank you Gin13, it’s been such a relief to off load and get such good advice. I’m determined to get to the bottom of this and have a proper diagnosis. Then l’m sure l will feel more positive once l know what l am up against.

[Gin13 in reply to Alwynk]

BTW I was immediately given an injection of Intromuscular Deposit-Medrone (pred didn’t agree with me) and put onto Methotrexate. My mobility is much improved although I still have pain especially in hips and knees. It’s early days with treatment but I’m positive once the Methotrexate kicks in I’m going to be up and running again 🤞🏻🤞🏻I’m really trying to be positive now I know and make the most of life.Hopefully some of the tips here will assist in your diagnosis 🤞🏻😊

[Alwynk in reply to Gin13]

Mmmm, wonder what tests l will have ! As long as l get a diagnosis, that’s the main thing 👍

[Gin13 in reply to Alwynk]

I think some of the people I saw were quite happy to write me off at 62 but I told them I’m an active person and this isn’t me, I can’t accept this….. I know I was lucky to get the PET scan, I felt so strongly I would have had it privately if they didn’t do it. You sound a strong person so keep with it, nothing worse than not having that diagnosis x

[Alwynk in reply to Gin13]

Thank you for the advice Gin13, will definitely stick to my guns, enough is enough.

[SusyTe]

Hi Alwynk. Just thinking maybe your nearest support group might be able to help you with finding a private consultation. X

pmrgca.org.uk/author/yorksh...

[Alwynk in reply to SusyTe]

Thank you SusyTe, have looked on website but there is nowhere nearer to York than Ilkley that l know of and that’s a tad too far away for me. I don’t think there is a group in York, and l really am not in a good place right now to contemplate starting one. My OH is in his 80s and is very frail and slowly dementing and needs a lot of care.No wonder l’m stressed out and flaring!!!

[SusyTe in reply to Alwynk]

What I really meant was if you contacted them they might know of someone you could see privately nearer you. I would have thought they might have that sort of information. You could drop them an email to ask for recommendations. X

[e-mail]

[Alwynk in reply to SusyTe]

Aaaah, l see, sorry l misread you, ……. yes that’s a great idea, l will do that. Thank you

[sampete]

Is Derby Royal to far for you? Have heard good reports of Dr Nicholas Raj if he is still there.

[Alwynk in reply to sampete]

Too far away sampete but thank you for your reply

[PMRpro Ambassador]

I can't remember the name now but there is/are some very good rheumies in the relatively newly formed East Suffolk and North Essex NHS Foundation Trust which was formed on 1 July 2018 through the merger of Colchester Hospital University NHS Foundation Trust and The Ipswich Hospital NHS Trust.

esneft.nhs.uk/

Maybe someone on the forum can vouch for someone there? The website actually mentions polymyalgia - which is unusual! And one of the listed rheumies appears to do the ultrasound diagnosis in GCA.

esneft.nhs.uk/service/infla...