Hi all
Due to Brexit we are considering coming back to my husbands fair country Scotland can I ask I know in the past some of the Scots do not get all the RD drugs we get here. Is anyone on Toczilimab injections and who is their specialist. I have a fantastic specialist down here in Rochdale called Dr Bowden. But if we do move back to Scotland I just need to know what I can be prescribed.
Thanks
Shazbat
Hi shazbat
Toczilimab -My understanding is that this has been available on prescription in Scotland since 2012. Many biologic treatments are available here, as in the rest of the UK.
There are many good rhuematologists based at the western general Hospital in edinburgh and my experience has been that they are very thorough.
Bring plenty of warm clothes!!
Here in Lanarkshire Dr Munro has a great team under him from Wishaw General and Monklands. All biologics are available and all prescriptions are FREE.
Many tratement ang good rheaumatogist basis? I can not go to rheumatologist in Scotland via NHS beacuse my GP told me, he has a good experince in it and he give me the best medicines.. it is meaning a have to use addictive painkillers ONLY.
Bessy, please go back to GP and insist on a referral to a rheumatologist. If you have inflammatory arthritis it is your right to be assessed and treated by a Rhuemy. Osteoarthritis may be treated differently and by your GP. I suggest you ring the NRAS helpline for a chat about your concerns about your treatment, sounds like you may need a bit of support.
It's the Western in Edinburgh that I go to and all the staff are fantastic 👍
I couldn't agree more. I have Mr Lambert and although his social skills leave a bit to be desired, he is a great consultant and very on the ball.
Hi Shazbat, I live in Tayside and yes you could have Tocilizumab here - it's the only one I've not had (!!) and my Rheumatologist said we could try it. Am presently trialling Abatacept. But I think it'll depend on each individual health board and how they allocate funds - so don't take this as applying to ALL Scotland, becos I just don't know for sure. Where will you be moving to? I think my Rheumatologist is one of the good ones, she is very caring. Are you meaning to find one privately, becos if so then again I have no knowledge of how that works?! You might also need to take into account that everything, and I mean everything, could change drastically IF the SNP get their way and Scotland becomes independent... Who will allocate health boards their funds then?? Who will decide which drugs we're allowed? Just a thought. If you want my Rheumy's name or more info about her, do let me know. Am not sure if we're supposed to mention specific doctors on this forum or not, but no doubt someone will tell me! Take care meantime.
Hi - I'm in Tayside too and second what Scotlass is saying although I haven't met my new rheumy yet as my last one retired.
I was based previously in Orkney with Grampian and the expertise is there in these hospitals and they have a fairly new biologics suite so I imagine you would be fine there too. I know there were terrible staff shortages in the Highland rheumatology unit (Raigmore/ Dingwall) though so best do your homework about which area you choose because it is rather patchy. I was badly served by a rheumy in Fife but it's meant to be excellent for RA. Whereas he Ninewells has been excellent for me so far.
As far as I know all the biologics are available here too although they are licenced for use by a different organisation to NICE, called the Scottish Medicines Consortium. This organisation meets monthly in Glasgow to decide which drugs get to be licenced for use in Scotland. NRAS has an ambassador network in Scotland and its own Scottish patron is an eminent immunology rheumatology professor based in Glasgow - so the helpline could probably tell you about this.
I think Scotlass is right to be concerned about how things may pan out for Scotland over the next few years if we lose the Barnet formula - particularly for those with rare rheumatic diseases such as Scleroderma and Vasculitis.
But personally I would say it is unlikely to be worse than how things are presently panning out in England right now!
...Ah, I see from abannister's post that it's ok to name mine : Dr Silburn. She's part of the Rheumatology team based at Ninewells hosp, Dundee.
Totally agree, Dr Suzy Silburn is excellent, without her expertise and skills I probably would have lost my job etc. Always takes time to listen, adapts meds when required and most importantly diagnosed me correctly after four/five years of others failing to do so. Can't praise her and the specialist team enough. Just hope we can keep her in Ninewells.
What area are you returning to Shabbat? It was an option for me in the borders. I had a great consultant there, my consultant in Edinburgh Western was good to. Unfortunately my experience of Fife is not so positive ☹️.
Interesting - mine wasn't either. The Ninewells has been much better for me than Fife although I live in Fife (just!)
There is about to be the first NRAS group meeting at the Ninewells I believe - unfortunately I'm away just now.
When is the meeting at Ninewells Twitchytoes (great name 😊) Did you transfer to Dundee ok, I'm wondering if I can even be referred back to Edinburgh, my consultant doesn't listen, I'm even considering a house move because of the stress this causes me.
Sorry - not a group meeting after all - got in a muddle over a different organisation related to Sjögren's. This is the NRAS event for anyone's interest
"Taking place in: The Gannochy Lecture Suite at Ninewells Hospital and Medical School, Dundee, DD2 1UB
Details of parking and directions can be found on the reverse of the invitation letter linked below
Wednesday 22nd March 2017
6:30pm – 8:00pm
Keynote presentation by Dr Tan, Consultant Rheumatologist
‘Rheumatoid, Psoriatic and Osteoarthritis - What's the difference?’
Q&A session with an expert panel of healthcare professionals from the rheumatology team at NHS Tayside:
Dr Tan, Consultant Rheumatologist
Dr Vinod Clinical, Lead for Rheumatology
Diane Crake, Lead Rheumatology Specialist Nurse
John Ellis, Rheumatology Occupational Therapist
Alison Knight, Specialist Rheumatology Physiotherapist
Nicola Bywater, Specialist Rheumatology Podiatrist
To view your official invite to this free event please click here
Please let us know if you would like to attend by calling Kim or Gill on
01628 823 524 or by email to groups@nras.org.uk
All welcome - You do not need to be a member of NRAS to attend.
This is an open, free event.
Do you know someone living with RA? Please pass this information onto them - this is an open invitation and everyone is welcome!"
It's very stressful I know. I came down from Orkney and the chap in Fife undiagnosed me after five years of diagnosed and treated for RA - but also told me that I didn't have a connective tissue disease - which I knew I did! His letter finally came after four months requesting I be tested for a rare and incurable cancer?! Then I saw him again last year and he was very dismissive but agreed to see me for my "inactive RA" in six months.
Moved to Tayside due to housing problem and new GP referred me straight to neurology and rheumatology at Ninewells. Got rediagnosed with primary Sjögren's or possible Scleroderma plus Sjögren's - so next clinic is CTD clinic testing for Scleroderma - but I'm already on the right drug even if so. No thanks to the Fife rheumy who said I didn't have Sjögren's and certainly not Scleroderma! I was on steroids when all tests were run by him and he knew this. Later at Ninewells they started from scratch and my ANA had turned a clear positive , pattern of Scleroderma or Polymyositis. Lip biopsy at dental hospital was 100% positive - highest score ever.
Now back up north for a few more weeks - being monitored between my old island GP practice and new practice in north Fife - just across from Dundee.
The GPs there complain that they are neither one thing or tother - officially in Fife but with Dundee postcode and five mins from Ninewells , 45 mins from Dunfermaline but their patients can't attend Tay pain clinic in Ninewells so have to go all the way to Dunfermaline 45 mins away - with dwindling public transport network.
Think very hard where you go next I would say. Can't you request to see a different rheumy perhaps? Fife is meant to have some very good RA consultants and be a centre of excellence I was told ? Mind you the Fife rheumy was recommended to me as having special interest in Sjögren's and Vasculitis. Hey ho!
Hi
Can I ask what fife Rheumy you saw it wasn’t Dr Harris was it?
Dr John McLaren
Thanks for getting back to me. I see Dr Harris but she isn’t giving me the lip biopsy and I am feeling worse she also said probable sjogrens and offered Hydroxy but didn’t seem bothered.
Well in fairness there are no systemic treatments designed for Sjögren’s apart from Hydroxy anyway. Lip biopsies are a little invasive and increasingly hard to get very busy oral medicine clinics to undertake - they can refuse. So it’s good she’s prepared to treat you anyway.
I think lip biopsies should be done though because they can obtain a lot of other important information from these. Also they can’t research seronegative Sjögren’s without diagnostic confirmation by lip biopsy and the more clinical trials and research is done the more likely they are to find a targeted treatment for us in the future.
Has Hydroxy helped you? Your right I am glad she has offered me the treatment. I was told I do have it but the negative antibodies doesn’t help confirm.
I was given it as well as Methotrexate for RA. Unfortunately I couldn’t tolerate either drug finally. Hydroxy gave me slow anaphylaxis! But this is unusual and yes it did help a lot with pain and fatigue. I’ve tried 3 others too now. However I have been untreated now for a year. I believe the disease is progressing slowly but surely to involve my kidneys, pancreas and central nervous system.
The only place in Scotland with a Sjögren’s specialist is Gart Naval, Glasgow. I’m thinking of asking for an out of area referral to see her instead of my current team - who seem to think that my pancreatic and renal problems are a separate issue.
Thanks, that sounds awful!
I am sceptical to try it as I also have Hashimotos and not sure how it will be with that disease.
Who is the sjogrens specialist in Gart Navel? Xx
I have Hashimoto’s too - it’s a common pairing I believe as the Sjögren’s often attacks the Thyroid. I don’t know if Hydroxy adversely impacts on Levothyroxine or not - I don’t think so.
Thanks for your advice, do you know the name of the sjogrens specialist you mention? I may try and see her. My Rheumy has been good but I feel she’s tied if you don’t have the positive antibodies she can’t diagnose but she thinks I do have it, offered me treatment also and diagnosed Sicca. My exhaustion is getting worse I can barely move in mornings
Dr Monica Gupta. But I doubt you would get an out of area referral from Fife. She wouldn’t offer you more than Hydroxy anyway. Dr Harris is supposed to be good but you could ask her to refer you to Dundee dental hospital for a lip biopsy.
Join the Australian Sjögren’s HealthUnlocked and communicate there as it’s it fair on Shazbat that we hijack her old thread here!
She is good she’s very kind, I just think she keeps going on about the formal diagnosis too much when she has also said I do have it. It’s very misleading. I think the guidelines are very tight but I do have positive everything else!!
I could try for the lip biopsy don’t see her now until June, I was paying to see her private in spire Edinburgh before she referred me to the NHS as I couldn’t keep up the private cost. Cost me £100s!
Do you know if Hydroxy affects Hashi in any way? I know it suppressed your immune system that worries me.
As I say you should post on the Australian Sjögren’s to ask about Hydroxy and Levo. It’s barely an immunesuppresant. Lots of people with Lupus and Sjögren’s take it with no problems and Hashis is common so many on Levo too. I think you’re worrying too much about Hydroxy but I understand you want formal confirmation of Sjögren’s. Start your own post though as poor Shazbat gets alerts for all of your questions!
Hi, I live on the West coast and my Rhuemy team are based in Royal Infirmary in Glasgow, 100miles away. The downside of living in the sticks. I've been prescribed enbrel and and don't think there is a problem with other drugs. Scotland does invest in and prioritise its health services, more so than Westminster does in England. I have been considering moving closer to family south of the border but I am a bit hesitant as I fear what is happening to struggling health service in England.
I know that another member of this community was told by an Edinburgh rheumy that she was in remission when she wasn't. She had a big fight to get back on track with biologic infusions with another rheumy in same hospital I believe. It was very traumatic for her as she suffered erosive damage and the horrible feeling of not being taken seriously or believed. So this can happen in any hospital I think - rheumies vary a lot. You could move back to the Western only to get someone supporting the Fife rheumy' position.
My battles have been a bit different to most here but very much along the lines of what people with connective tissue diseases such as Lupus go through. There are so many rheumatologists who just focus on RA but don't know enough about the other rheumatic diseases. In your case I would have thought that MRIs should be able to confirm whether or not your pain is coming from active inflammation or Fibro/ OA/ other. Active RA is fairly easy to confirm or refute if the will is there to look for it.
I know, it's shocking, I am still on my biologics, so in remission while on my meds, no account has been taken of the X-rays confirming joint erosion by my last consultant. It drives me nuts, which as you know results in flare ups caused the stress of the whole situation. Anyway rant over for the day, I hope things settle down for you, have a good day, when the lady reads all these posts I think she may want to stay in Rochdale lol 😊
I'm sure it's as variable in England as Scotland but less competition I suppose.I felt mine in Aberdeen (including neurologist) were ranking together over me - then this reoccurred in Fife - "can't tolerate meds so we take the wait and see where this goes approach". But then I got to the Ninewells and, by that time off all meds my bloods were able to speak volumes quite confidently. Not yet met a new rheumy - also under neurology - but they have all learnt that I can hold my own and am to be believed! X
if Shabbat had seronegative Lupus I would advise to stay put as Scottish rheumies have agreed that this doesn't exist! But RA and PsA are pretty well managed in Scotland I would say.
Hi Shazbat
I attend Forth Valley Royal Hospital. Very happy with Consultant I see - Dr Blyth. Had psoriatic arthritis for 14 years and now on Benepali/Etanercept Bio. As long as you meet the clinical threshold meds are available.
Thank you all for your replies. We are selling up here in Rochdale and we have decided to buy a nice static home so I can really look anywhere in Scotland. It's sad what is happening down here with Brexit, we still have available to us all the biologicals and they are charged for so are free to the patient. I will be sad to leave my specialist because he has been fantastic and fought for my biologicals as this is my fourth and under nice rules 3 is supposed to be the limit.
So once again thank you all.
Shazbat
We here in Scotland get the same drugs as else where i have been on Tocilizumab for 6 years i attend the Western General in Edinburgh which is very good x
Hi I live on the west coast off Scotland and also travel 100 miles to Paisley for my treatment and my Ra consultant Dr Hutton a lady who has helped me a lot and I'm on Benepali and Mtx at the moment which is doing the business, hope you get fixed out soon👍
I can thoroughly recommend Dr McEntegart and Dr Wilson, based at Stobhill hospital and Glasgow Royal infirmary. We have fantastic Rheumatology Specialist nurses, and a great helpline, response same day ,or at latest next day. So important when you need advice and positive help.
I have had tocilizumab prescribed, unfortunately had severe life threatening reaction to it, but you should have no problem.
There is also an NRAS group which meets monthly in Glasgow, open to everyone, you don't have to be a member.
Glasgow has world leading research facilities in rheumatology.
If you want any info that I can help with, please pm me, I am sure you enjoy living in Scotland, I have lived here for 46 years, and could never envisage moving back to England.
Best wishes, Mavis xx
Thank you so much Mavis I recall about the new Research facility. I have been great on this drug, it was Cimzia that make me very ill I ended up with nodules on my lungs and could barely breath. Everything sounds good in Scotland and has answered all my questions. Thank you to everyone.
Shazbat
I am based in the North East of Scotland and my RA is supervised by Dr Black at Aberdeen Royal Infirmary. She has prescribed Cimzia for me, this gives you some idea what is available.
I would suggest caution about any moves to Scotland until the situation is much clearer. There is no certainty about the level of funding for Scottish Government and it's services in an independent Scotland.
Hi Shazbat, sorry I haven't been in touch I am in a agony at the moment with 2 compression fractures in my back. I am on morphine based medication on top of all my other pain meds. My rhumey called me wednesday to see how I was after seeing me last week and said she will discuss changing my injections as she feels they are not giving me enough pain relief. I will be in touch soon hopefully this new med will kick in soon. No fun at the moment.
Take care, Sue xx
Rheumatology review: Scotland
Changing Rheumatologists
Appointment with rheumatologist
To contact Rheumatologist or not
F2F with rheumatologist 
