Hi everyone, I am new to the site and hoping I may get some helpful info from you! I saw a rheumatologist in 2014 with achilles tendonopathy and golfers elbow. I had also had a bakers cyst on the back of my knee and back/neck pain. I had psoriasis years ago on my lower arms/elbows/scalp but it cleared up and I have been free from it for many years apart from occasional small amounts on my scalp. The RT said he thought I had early onset PSA and gave me a leaflet. The last 3/4 months I have experienced very bad pain in lower spine/buttocks/neck and the achilles has never gone away and I am currently having physio on it which seems to be working. I am also very tired and ache all over like having flu. I need to get a firm diagnosis but if I go NHS I think the consultant will just put me on meds - its not good here they always rush you and donât seem interested. I could go to London and see Arvind Kaul private which would be perfect but I live in Leicester and going back and forth via train would be difficult. Can anyone recommend a good specialist in the Midlands?
Hello Adie
Welcome here! Weâre glad that you found us, but sorry that PsA seems to have found you. Our âexpertâ UK mods will be able to advise you better than I can, but Iâll give it a quick go.
It certainly sounds as if you might be a member of the PsA âclubâ. The best part of that news is that itâs better to be diagnosed than undiagnosed. If you can afford a private consult to get a firm diagnosis, I would do that. I think you will find that an excellent time and trouble saver in the end. Dr. Kaul is, I think, excellent. You might also consider Dr. Laura Coates in Leeds, or Dr. Eleanor Korendowych in Bath. Yes, itâs a long way, but if it gets you a solid diagnosis, it will be worth it.
From there, you can decide what to do in terms of choosing a consultant for the long term. Several of our members have opted to invest the time and money in travel so that they can have top notch specialist care.
As for âtheyâll just put me on medsâ, well ⌠to make a long story very short, we have a saying around here: Fear the disease, not the meds. Make no mistake about it, PsA is often mild, but it can do some serious joint damage. Please donât risk that.
Over to our UK members âŚ
Hi Seenie
Many thanks for your reply. I think I will go to Dr Kaul as its only an hour on train and Bath or Leeds such along drive and my achilles not good with the clutch on long journeys!! Just a pity no good ones nearer to Leicester! I could pay to go private here but none of the RTs have a speciality in PsA so may as well bite the bullet and go to London! Dr Kauls office said if I can get my bloods done here on NHS before I go it would save me ÂŁ600 so will ask my doctor on the 1st August.
Hi Adie, it sounds like you have a solid plan, which is great. Private or public, they are likely to want to start you on meds, because that is what is demonstrated to work.
Enhance your plan by doing some research before you get there, and make that trip really worthwhile by understanding as much as you can.
Let us know how you get on 
Hi Adie. I travel a fair way to the Bath hospital since moving to Kent. I think your plan is a good one, and possibly Dr Kaul could recommend a specialist nearer your home when you see him. Appointments donât come around that often though so a bit of travelling can pay dividends and once everythingâs in place your care should go smoothly in between appointments. A firm diagnosis is really the thing to chase right now.
As for meds ⌠nobody wants to take them. But the way I see it, PsA is toxic and the drugs I take reduce its toxicity. There are probably a lot of holes in that way of thinking but it works for me! And actually my general health has improved alongside the PsA in the years since diagnosis.
Hi everyone - thanks for all your support. Before I make an appointment to go to London I just want to see my doctor and hopefully get an mri on my back/neck. Reason for this is (according to my physio) that my achilles tendonopathy could be a result of spraining it badly a few years ago which in turn had given me the lower back/buttock pain by favouring it while walking. The shoulder pain I get he believes is from my neck where I had epidurals a while ago for two prolapsed discs. He says this explains the headaches and nausea. So just want to rule this out first as currently no problems with fingers/toes and virtually no PS for years - just get a couple of sores in scalp after going to get my roots done at hairdressers!! Anyway maybe its a false hope that its not PsA but will find out before I go to London.
Hi Adie,
Another UK member here too. Hereâs my story. Had very bad skin psoriasis from aged 13 to around 21. It lessened considerably after that and disappeared completely aged 37 when I badly fractured my shoulder. Fast forward to being 53 and I decided to have my gross bunion corrected by surgery, work had given me BUPA so why not since it was starting to hurt. 6 weeks later I had horrible foot pain which wouldnât get better. 3 weeks after that I hurt my neck and arm from a mad amount of swimming and that didnât get better either. Went to PT and lots of suggestions were made not unlike what your PT is saying. Everything ached though and I had never felt so tired. By March I was at my local rhuematologist and he said palendromic arthritis first of all and then decided it was PsA. So I spent a year having a temper tantrum about that having failed oral mxt. Then I decided to ask my GP to refer me to Dr Ellie in Bath and I saw her in March and finally feel like Iâm being properly cared for. I live in Kent and make the journey to Bath. Itâs so worth it to me. So just remember you can see people out of your area on the NHS too, so donât necessarily have to go privately.
In the year of my temper tantrum, I went from no signs of joint erosions to three joints showing signs and went from being RF negative to RF positive and that was a lesson I wish I hadnât had to learn. All of my tendonopathy is PsA related. And like you I had MRIâs too but they showed nothing. Best of luck.
Hi
I was not aware that you could be referred to a specialist outside of your area on the NHS!! Presumably you would wait longer for an appointment? Should all doctors do this? How often do you travel to Bath - just trying to gauge cost v time off work etc
Yes you can be referred out of area. If itâs a centre of excellence for PsA youâre after, that may be easier than referral to any old hospital. The reason is that their status means they are geared towards working with GPs and CCGs across the country whereas âregularâ hospitals may have more difficulty establishing long distance relationships to share blood test results etc. I know, weâre meant to have a national health service but good lines of communication arenât always automatic.
I first saw the consultant in Bath privately, which was almost instant. She accepted me onto her NHS list and then the Bath hospital decided that local CCGs have to give approval for funding for out of area referrals, which messed things up for a while. Could be that Leeds now has the same policy, I donât know. But if youâre lucky approval should be a formality and you shouldnât have to wait too long for an NHS appointment at your chosen hospital. A cooperative and helpful GP can make a big difference too.
My appointments are going to be 6 monthly from hereon though initially they were closer together. In the early days you might reasonably expect appointments to come around every 3 - 4 months for a while. The rheumy nurse phone line is very helpful though and Bath arranges âsatelliteâ appointments in my local area for things like PT, podiatry etc. through my GP.
Hi Sybil
Many thanks this was most helpful. I have now managed to get a cancellation to see my GP later today to get the referral letter sorted. I have spoken to Bath and they will accept me NHS although I have got a private first consultation booked for 24 August like you did. Hopefully all will go well and I can start to get things under control.
Wow Adie! You are making progress in leaps and bounds today! (As if any of us can leap or bound with our condition!) Well done: I think you will find the time, effort and distance worth it. Hereâs why. Psoriatic Arthritis which is accurately assessed and properly controlled requires less frequent monitoring and follow up than disease which is only âkind ofâ under control.
I was seeing my first rheumatologist every three months. In between, I was dragging myself around, in pain and feeling awful, and seeing my GP â to no avail â for this and that in between. Nothing changed for me over the course of a year, in fact, I got worse.
In desperation, I switched to the Canadian equivalent of the Bath clinic: world class experts in this oddball hard-nut-to-crack disease that we have. That clinic is a dayâs journey and an overnight hotel stay away for me. Those experts examined, assessed and tested me to within an inch of my life. They prescribed a completely different treatment regime, and by the time I saw them again three months later, I was showing significant improvement. Then I started seeing them every six months. Now I see them once a year, and I am better than I have been in decades.
Your mileage may vary, but I do think that seeing the best expert that you can possibly get to will pay off for you: youâll get the best chance at being as well as you can be, as fast as possible. In my book that is so worth it.
Hi Adie,
the tendons in my body are painful targets of PsA. My experience is actually the opposite of what your physio is suggesting. PsA âcausesâ sprains and tendon injuries. Adapting typical gait to prevent re-injuring is something my body has become very good at. Problem is that the shifting gait also shifts the target of the PsA. Iâve had tendon issues in my knees, achilles (at the heel and at the calf attachment), with my elbows (practically daily if Iâm active) and with my hips. I know I havenât tripped, fallen, twisted or some other thing to âcauseâ injury to these tendons although the inflammation is very much related to being activeâand Iâm not giving that up.
Itâs always wise to seek counsel and even imaging if it can show damage, but know that the physio might well have the cart before the horse with this.
Fabulous Adie. I asked my GP to refer me to Bath in early January and got an appointment late March. My next appointment in Bath is next week and their nurse helpline is simply excellent. But most of all I know Iâm in the best place possible.
Hi everyone
Although I am going to go to Bath, private first, followed by NHS hopefully, I did find out something that may be of interest to you all. I had also E Mailed Dr Laura Coates (Leeds) as I read on the net that she was now based at Oxford. She has replied that she does not do private but would see me NHS if I get a referral at the Nuffield Orthopedic Centre in Oxford. So going forward and once I am stable on meds I may be able to transfer there later on as that would be almost half the distance to Bath.
Thatâs great info. and good that you have more options! Perhaps Iâll bump into you at Bath in December if you stay with them a while!
Oh, that is interesting, Adie. I looked her up in Nuffield, and the hospital has listed her as âRheumatology Locumâ. So her working there may be temporary.
When I googled, though, I got this. That doesnât sound like a locum to me, but the work sheâs doing does sound extremely interesting. Itâs people like Laura Coates who are working, largely sight unseen, making life better for the likes of us.
I should have mentioned that Iâve heard Laura Coatesâ name a lot. Canât provide one iota of detail but my antennae are twitching towards âexcellentâ, âhighly recommendedâ etc. She has been around a fair while too.
Hi all - not been too good for the last 2/3 weeks and canât wait to go to Bath on the 24th August to hopefully get something confirmed. I have recently had all my bloods done so I can take to Bath with me and doctor has pointed out that I am Vitamin D deficient and told me to take tablet daily. On doing some research this may have been caused by other meds I take daily for bile malabsorbtion unless PsA can cause this as well? Really annoying as was put on this med due to having my gall bladder out a few years ago and possible IBS - they told me my stomach pains were due to polyps in gall bladder and best to have it removed but after they took it out said there were no polyps just a bit of grit!! Anyway seems that I will get a PsA diagnosis as apart from the problem with my achilles, my psoriasis of which I have been free for over 15 years has now returned on my scalp but also between/under my toes which I did not have before. Also hip/buttock/neck pain increasing and now have started to get searing pains down outer side of left thigh especially when sitting down. Just bought some Eucerin for feet as told this is good and am have been using T-Gel for years so hopefully will keep it all at bay till I get to Bath! Like other posts I have read, my partner not terribly sympathetic and if I say I have pain just says he gets pains all the time - just a sign of getting old!! Getting very tired all the time but at least I work from home so not affecting my life too much at the moment!
Do remember to see some of Bath too. We had a lovely trip there last week and Dr Eliie was just fabulous.
Hi - yes planning on going down in morning and lunch before appointment!