Morning everyone. Last monday I saw a new Rheumatologist with the view to transfer. A couple of week before I saw a really good and recommended Cons privately. He said I need sorting out and need a lot of scans tests etc including a bone scan. And to see a dermatologist. I cannot get on his books because the hospital will not allow him any new Patients at the moment. He said he would write to the Cons I was due to see.
Appointment, took photos of rashes and white toe nails plus swollen joints. Also some clinic letters he did not have my notes. This included a letter fromthe oral med Cons, they think I have secondary sjorgrens and steven johnson. They where hoping to jointly treat me with this new hospital.
The Dr never asked anything about my joints or how the arthritis affected me. He glanced at the photos and didnt really look at the letters. I took my repeat prescription list, he looked and said I will get your G.p to prescribe the mtx injections with shared care.He never mentioned any of the other many medications. I have had problems recently due to vomiting awaiting c.t results, G.p thinks it may be gall bladder problem, he reduced mtx from 25mg to 20 because I couldnt get a response from current hospital. He asked me to get am exam couch, only taking socks off. He looked at my fingers, one elbow and moved my knees. My knees are swollen and causing problems and using a stick more. Didn,t examine or look at them.
He said my bloods do not tell them what type of inflammatory arthritis, he thinks it points to psoriatic arthritis. I mentioned my crp and esr rarely get high even during a flare. Again he said points to Psoriatic, I was pleased he could give it a name at last sort of . Thought I may now get sorted and get on with life. I am struggling and been off work for 5 weeks, they are talking about ill health retirement.
He then said they could use anti tnf but not yet. He looked at a Mri I had last year of my Si joints, had a bad time. Was told at the time no inflammation. G.p prescribed steroids, which I am still on. It improved after about 5 days on these. Anyway he thought he could see some inflammation, he wanted a full body MRI. ( had it this week, just whole spine and pelvis ). Then he said I will see you in 12 months !!
I was a bit shocked, I see the old Cons every 4 to 6 month and a nurse every month. At that point I asked about the fatigue that is causing great problems and mentioned my knees. Also explained about work. He just replied nothing he can do about fatigue, lose weight and do leg stretches. That was it. No blood test, no Nurse , helpline number, dermatologist or any other explanation or advice.
Thought about it all week and I really do not know what to do, go back to the old team or just hang on and struggle.
Saw my G.p who is great. He was astounded and said he has had a lot of this due to nhs being stretched. He has done a ref to a dermatologist, the private rheum wanted me on a tablet for my bones along side the ad cal and if I cannot tolerate infusions, so G.p has sorted that. He wants me to have the MRI and he will check it too, his words the Cons may have to eat his words and call you back. He wants to see me in a month, gave me another note for work he says I am not moving well and continue with steroids. Oh and this weeks extra is an infected finger so 7th lot of antibiotics since July last year. When I go back we will sit down and discuss everything.
I still have an appointmet with old rheum Spr next friday. I am so confused I do not know what to do. His last appoint said if I am not coping and cannot get off steroids he will add another dmard. I already take 3. Again I just do not know what to do. Am I asking too much being unreasonable.
Sorry for the long post, I feel better just getting it out to people that understand.
Thank you Moomie
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moomie
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I'm confused too, humour me! Is it the case that your 'old rheum' is an NHS one? And that you then saw a different consultant privately (the one whose books were full) and were subsequently passed on to a new consultant at the same hospital (privately or on NHS)? And that this last fellow is the one who plans to see you in 12 months?
Assuming I've got all that right or nearly right, the main problems with the new doctor would seem to be the rather brisk physical examination, the complete lack of ongoing support e.g. helpline, his lack of communication with you, the fact that he brushed off your fatigue and the 12 month wait. On the plus side, if he is correct in thinking it is PsA then he does sound on the ball, for example in not expecting your inflammation to necessarily show up in blood tests. This last one often happens with PsA and if doctors won't take any notice of a PsA patient unless they have high ESR / CRP that can be a huge stumbling block. The fact that he thought carefully about your MRI and then ordered another one also seem very positive.
I'm wondering about the 'not yet' bit re. starting an anti-tnf. Might that possibly be because you have other health problems that might need sorting beforehand?
Anyways Moomie, I've just had the appointment from hell at the new hospital .... and I thought it was going so well! I've decided that I'm going elsewhere. But while I was pondering what to do I realised that the one thing I find particularly difficult is communicating with a hospital after an appointment to protest / question / re-arrange / complain .... you name it, I hate it! I always feel that somehow or other I'm likely to put my foot in it and get expelled! HOWEVER .... I'm able to walk easily without a stick, I am already on a biologic that is working okay, I have a firm diagnosis ..... Your situation, frankly, is a whole lot worse. And as I recall, when I've been in a right mess I'm not so shy about speaking up for myself.
So what I think I'd do is to compose a letter to the new doctor. You could thank him briefly for the positives and point out that you are beginning to feel considerably more optimistic (you may not be, but it can help to sound like a glass-half-full type) I would then say that I would however like some clarification about a few points, especially the long wait for another appointment and the possible timescale he envisages for starting a tnf. He is clearly a 'PsA aware' doctor, so some reference to the NICE guidelines for treatment, risks of joint damage (and hence your concerns) etc. would not go amiss. I'd be happy to help with any of that & the LWPsA site would undoubtedly be a good source of further ideas / info. as well.
Thank you poster for your positive guidance and thoughts. Yes you are correct I did want to see a cons in particular so paid private. The new one is nhs and worked or trained on the Leeds rotation so is aware. Old Rheumy is a different hospital. I know it's complicated.
I am so sorry you had a bad consultation and feel you need to move. It is an awful situation you do not need this upheaval. Why cannot Dr s just listen care and communicate anymore.
My G.p says he calls them baby Consultants now. Appointed young not got enough experience in dealing with Patients in a caring manner.
I would be interested to see his letter back to myG.p. Not sure if I will be copied in. I think I feel optimistic but just do not feel looked after. So many things going on. Strangely enough spoke to Rheumy Nurse I use to see . She was gob smacked at the length of time. Her thoughts similar to yours 're diagnosis. She also knows him and said she would never see him due to his brisk manner.
Oh what a mess !
I will try to have a look at the site you suggested. In the meantime I think I should cancel my old rheum appointment. Do not want to cancel altogether yet because their O.T are going to help with the work problem.
Do hope you can get a solution to your issues. It does make you mad doesn't it.
Thank you for wise words and advice. I am going to digest it now.
Just another thought Postie. How much influence would a dermatologist have ? No appointment as yet though. You have made me feel more positive. Thank you.
If your psoriasis is really bad you might qualify for biologics purely for that. I'm not a frequent visitor to dermatology, I had a year of psoriasis in 2015 but of course by that point I was already on treatment for PsA. All I know in terms of influence is that they are meant to look out for signs of PsA in their psoriasis patients and refer to rheumatology if necessary. Whether they'd be able to chivvy rheumatology along .... difficult to know. My rheumy played it the other way round, chivvying dermatology when my skin was bad.
Optimistic but not looked after .... yes, I can see that, sounds like that pretty much sums up your current dilemma.
It's not very encouraging that your rheumy nurse sees that consultant as overly brisk, you'd kind of hope he was just having an off day but doesn't seem to be the case. 'Brisk' on its own can be okay but the wait and just leaving you in the dark to such an extent is really very confusing.
I saw a rheumy nurse. I've seen the consultant once so far and she seemed fine. But apparently I'd have to see the nurse next time too .... and it was dire. She didn't seem to know anything and proper examination / explanation, anything really did not seem to be within her remit. So basically I'd be in the hands of someone who doesn't even seem to have read the Arthritis Research UK pamphlet on PsA .... It's odd because rheumy nurses at the last department I attended were very good and were able to refer to the rheumatologist very easily. This lady seemed to be floundering on her own. Honestly, I'd be better off consulting the bloke who comes to read the meter, at least he might not be so grumpy! So I am off to the other centre of excellence for a private appointment next Monday with a view to transferring to their NHS department thereafter.
I do feel for you. It's not as if you're on your own, clearly you have some very good people watching your back. But the lack so far of a really good rheumy you can trust is a real problem. You will get there I'm sure.
Link to NICE guidance on the treatment of psoriasis:
Section 1.2.2 is about checking patients for PsA and referring them to rheumatology
Then there's this:
1.5.2.3
'In people with both active psoriatic arthritis and any type of psoriasis that fulfils the criteria for systemic therapy consider the choice of systemic agent in consultation with a rheumatologist.'
(So looks like dermatology would or should at least consult your rheumy if they think your psoriasis needs biologics.)
And again:
1.5.3.2
'If a person has both psoriasis and psoriatic arthritis, take into account both conditions before initiating or making changes to biological therapy and manage their treatment in consultation with a rheumatologist'
I'd conclude that the opportunities for dermatology to prompt or chivvy and generally liaise with a rheumy arise when PsA hasn't yet been diagnosed and then when biologics are being considered. I've not yet found any guidelines etc. about them giving rheumatology a kick up the bum at any other time! But that doesn't mean it doesn't happen.
Thanks postie great advice and link. Sorry I didn't say I have not had psoriasis. Had rahes that had been passed off as vasculitic first time and a rheumatoid rash last time. Nails not sure. I do have photos though to show them.
Crikey the Nurse sounds no good at all. Like your comparison to meter reader :). It must be so frustrating when you had a good team.
Good luck with your consultation next week.
I will have a good read in the morning. Falling to sleep now.
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How do you manage your psoriasis?
