Hello all. Well today I had my first f2f with the consultant since diagnosis and you can probably tell from my title that I am not happy. In fact I am really, really, really p'd off.
She was very pleasant and not at all dismissive but she didn't examine, said she agreed that if I have seen no benefit from the drugs so far I should stop taking them, which is in total contrast to what she said a year ago before I had any of these pains and that was inflammation had been seen, I had to take the tablets to stop it from progressing and that was that.
The long and short of it is that ultrasounds are not available at the moment or for the foreseeable future because of covid and that meant my condition could not be monitored otherwise she would have sent me for scans. She did say though that she agreed with the nurse that some of my pains sounded mechanical and when I asked if it was likely that I had mechanical problems in so many joints: both shoulders, elbows, wrists, heels, knees, toes, fingers she was a bit vague but said that OA was common alongside Inflammatory Arthritis. I asked what could be done bearing in mind I already do my own physio and exercise regularly she said not much, just surgery. She implied that coming off meds was a 'wait and see what happens' and that if it all becomes unbearable when the MSUS becomes available to ask GP and I would be booked in.
Contrary to popular belief OA can be widespread and when it is it's extremely debilitating and usually results in surgery. She also told me that it's cause by an autoimmune response. She said something about hypermobility but I had stopped listening by then.
I stopped short of asking if she had misdiagnosed me. She looked back at her original diagnosis letter and went on to explain what Undifferentiated Inflammatory Arthritis means and she repeated that I had a type of Inflammatory Arthritis but it was too soon to tell which one.
I came away wondering what the hell all that was about. She has referred me to a pain clinic.
So, I have now made an appointment to the tune of £200 with a private rheumatology consultant as advised by my GP just to get some proper monitoring. I've got an appointment with GP tomorrow for him to formally refer me.
I honestly don't know what to do about the pain or self management. I already do everything that is suggested and prescribed for OA and I am not clueless when it comes to pain relief meds. NOWHERE on the internet, not even Versus Arthritis is there ANY info on OA in every joint. I'm aware that she didn't exactly say that I had OA in every joint but se has basically implied that if hydroxyc. and mtx don't work then that's it, you've used up all your lives as it were!
I was in Tesco with my husband and daughter on Sunday and my shoulder 'started'. It was bad I almost cried. I'd come out without pain killers and so I went to get some paracetomol and told my husband I just had to get out and sit down somewhere. It was similar with my elbows this morning in Boots - it seems that carrying my handbag triggers it sometimes. I've got so little strength in my wrists and arms generally that even carrying dinner plated into the kitchen is a struggle. I mean this is all now starting to interfere with my life and activities and as usual and especially after today I am wondering where this is all going to end.
My appointment with the private consultant is on 12 April and I will of course keep you all posted for anyone going through the same thing.
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Brychni
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Whaaaaaaat?! Absolutely ridiculous. Frustrating to the extreme and frankly gives you zero confidence in anything that’s been done/said over the years.
Sounds very sensible to see a private rheumatologist. Hopefully they will reassess everything and come up with a proper plan.
April 12th seems like a long wait for a private appointment, though. Might be worth shopping around, unless you desperately want to see that particular consultant.
Not sure if it’s a possibility for you, but you can definitely get private ultrasounds done at the moment. Something to consider.
Will be interesting to see what everyone else thinks...but I’m fuming on your behalf! Xx
Hi L - yes, I called the consultants personal secretary that evening to make sure that I would be able to have the MSUS scan and she confirmed that. She then called back and said it was likely that I could have the scans first then the consultation which does make sense. Fingers crossed.
It makes me so sad to hear your story and the suffering that people are supposed to just manage.
I had a very similar story to you...undifferentiated inflammatory arthritis, mechanical issues, OA...then after much 'pestering' on my part was diagnosed as having RA by my new consultant and have not really looked back since then. I've had many issues with meds, but the care has been good.
A private appointment sounds like the way to go, best wishes to you and do let us know how you get on?
After the appointment in the car park it was the first time I cried about it all. If she had said we can conclusively say that you do not have an inflammatory arthritis but something else and this is what we can do for you, I might have felt more in control. But as it was, she said that I have inflammatory arthritis but not sure which kind and all your joints are knackered and don't know why and all you can do is have surgery and go to a pain clinic. And all that without asking for any information from me. The only thing she seemed to seize on was that hydroxyc. and MTX wasn't working and I was right not to take them.
Ouch .. and you shouldn’t have to forgo scans having been in such pain and for a long time/waiting. You’re doing exactly as I would .. Going to see a private rheumy. xx
I'm so sorry to hear that Brychni, what a great disappointment to say the least. You've spent all that time waiting for, well nothing. It seems to be becoming common to hear of experiences like yours, not just rheumy doctors but GPs too. Goodness knows how it's all going to eventually pan out. I hope your private appointment goes well, although it seems a long time to wait but I hope you can get results with it, unlike today. xx
Where did that rheumy get their medical qualifications? Billy Smart's Circus? It's frankly outrageous to treat a patient in this way. I'm so sorry you had to encounter this sorry article and their rotten attitude. Sending virtual hugs and best wishes for your meeting with the private rheumy
I did come away wondering if she knew anything concrete at all. she didn't ask for ANY information. No examination, didn't ask for photos, didn't ask for pain score or even where the pain is. Bizarre.
I’m sorry to hear this but not surprised sadly. I had a private appointment cancelled due to covid and have had it rearranged start of April. I think the Scottish government are restricting the private hospitals at the moment . It’s just the worst that we’ve had to resort to spending hundreds of pounds just to get a treatment plan .... I really hope it’s worth it for both of us. In the meantime , be kind to yourself , lots of long baths or whatever makes you feel a wee bit better . Sending you hugs xx
Have you had bloods : Anti-CCP and RF as well as the usual FBC, ESR and CRP?
Do you have redness and or swelling ?
My first diagnosis was palindromic arthritis - my joint pain seemed mobile affecting one or two joints at a time, for relatively short periods of time, then moving to other joints, I fell over once’s as my leg gave way, my hands/wrist/elbow would suddenly become useless but only for a short while. Anyway, it soon developed into RA. I was fortunate to have an excellent, experienced Rheumatologist.
My point is that early stage RA can be difficult to diagnose and getting the right tests is vital.
Also, I had an MRI scan on my joints a month ago, and I have a friend who is a radiologist specialising in MRI scanning in England (I currently live in Scotland) so I know for certain, they are being done during Covid!
I hope your private consultation is much better for you.
Hi B - sounds very much like my patterns of pain. at the moment, as I type, it's my right shoulder and elbows. Last night I looked up exercises for various elbow, wrist and shoulder pains. When it came to elbows pretty much all the info and guides referred to 'the bad elbow' (both of mine are bad) and/or the injury to the elbow ( no injury, ever) and how long the pain has been there, if it's more than 2 weeks to see a Dr. ! well it's there all the time.
Also there is pain on the inside and outside: golf or tennis and mine is on all sides and the muscles coming off the elbows so I've come to a bit of a dead end with physio for elbows.
My GP told me that there is only one scanner and one MRI here and presumably the operator of said MSUS is held up elsewhere with covid.
That is totally disgusting. It's no way to treat anyone, let alone someone in pain. You're absolutely doing the right thing by going private for a second opinion. The NHS Rheumatology service is like a 3rd world service sometimes. No wonder you are frustrated and annoyed.
Unreal for you and I’m not surprised you’re furious. It is quite staggering to hear how things are. I think someone said about recent blood tests. It would be good to have them for when you go to see the private rheumy.
Btw ultrasounds, xrays, scans, mri’s and everything are happening as usual at Salisbury and Southampton hospital so it’s a lie that your being given. They are choosing not to do them or offer it to you where you are. Postcode blinking lottery clearly. And if it is an inflammatory arthritis then it should be treated still and the right med found... 🤷🏻♀️🤯 for you. The rheumy sounds like a complete waste of space and clearly not looking for options???
I had a similar but more compassionate experience on a telephone appt -with a consultant - because, however much joint pain I have my blood tests never show inflammation. MX was reduced as I was having some side effects, and she felt that it was ‘generalsed primary OA’ - although But the specialist nurse referred me for ultra sound - 6 week wait but it happened last week and shows lots of active inflammation in both hands and wrists - on a fairly’normal’ day.
Awaiting next move. (I was diagnosed Acute RA10 years ago with ‘no doubt’)
I’m as outraged as everyone else. It’s awful to send you packing with no hope like that.
I also agree that waiting till April for a private appointment seems excessive. I would be making a phone call to his/her secretary. If you don’t try, you don’t get. I’m sure your G.P. will be sending details of your blood results but might be an idea to dash off and get them done when you’re at your worst and take a print out with you. Just so they see most recent results. Good luck.
Hi E, I called the scretary who was also surprised it was that far away, although she has spoken to teh consultant and I think they want to book me in for the scan before then. It might be helpful to wait, see how I go without medication. By the 12th APril I will have been off the meds for about a month.
Sounds very much like a consultant I saw. She really upset me. We disagreed, fortunately for me she was in a bad mood and asked if I wanted a second opinion, yes please I replied. Best thing that could have happened.. Now have a good consultant who sorted all my meds. I now feel a different person and am starting to get my life back. See your GPRS and ask to see a different consultant
That’s awful not to be given any help. Don’t know where you live but here in Berkshire ultrasounds and mri are being done. You shouldn’t have to go down the private route and the annoying thing is these consultants work in NHS as well. Hopefully you get some answers and treatment. X
Hi Brychni I'm so sorry for your latest experience, it's something I worry about all the time, will they say oh we've got the diagnosis wrong just get on with your life so really feel for you. I remember you saying you were in Hywel Dda area, not sure exactly where but when I was making an appointment to see my consultant in November, his secretary asked if I'd mind moving to a later time as they had a patient driving up from Carmarthen.
I sent an e-mail to my consultant yesterday to say the pain was getting worse, I was feeling really sick, giddy & tired, to be fair he rang me and said to stop the MTX and to make an appointment to see him to try different medication possibly leflunomide, I've got an appointment next Wednesday with him at Spire, Cardiff. His name is Dr Camilleri and is absolutely brilliant and apparently one of the best, if you look on Spire's website it gives you all the info on all their consultants. I can give you his number if it helps.
Hi Garnacha, I booked the nearest at the Sancta Maria in Swansea, Martin Bevan. My husband's colleague went to Ceril Rhys Dillon after an almost identical experience. even the GP told me to 'shop around' but I didn't know where to start really! I did look for reviews but there weren't many. Please let me know how you get on with your consultant as that will be my next port of call if it doesn't go well with Dr Bevan although at the moment it is primarily it's the scan that I want in order to monitor what's going on. I'm slightly concerned about what will happen if it's suggested I go back on medication because there is no way I can afford private prescriptions. Do you know how it works?
When I first saw the consultant private I was lucky to have private medical insurance albeit only £800 for consultations, diagnostics, x-rays, ultrasound & blood tests, for anything else such as an MRI I had to contact them for approval first which didn't come out of the £800.
The consultation was £150 & steroid injection in my elbow £50 (£200 in total), then I had an MRI and follow up consultation, I had another steroid injection in my shoulder (£200 for both) and a guided ultrasound steroid injection in my hamstring, not sure what the cost of this was but I'd used up all my £800 allowance.
From my initial consultation I was prescribed etoricoxib and had to pay privately for this around £10 but only the once as the consultant wrote to my gp for him to issue, I was then also prescribed hydroxichloroquine which I also had to pay for privately for the first one then the gp took over.
By the summer the pain was back in all areas so went to see my husbands chiropractor, he was really good and tried acupuncture, electro therapy and exercises for me to do, nothing worked and again it got worse, in November he suggested I have a private x-ray on my elbow, this was £110, from this it was recommended I have a guided ultrasound steroid injection in my elbow at a cost of between £300 - £600!, (I rang my insurance company as I thought perhaps they'd pay for the injection but when I told them it was an ultrasound injection they said they'd cover it all) when I had the ultrasound injection they could see there was inflammation all around my elbow joint along with a calcium build up and a spur, the doctor said that I needed 2 injections but I was only booked for 1 as they didn't realise how bad the inflammation was, he said to make another appointment for it but I didn't as I'd made another appointment to see the consulant the following week.
When I saw the consultant I had to pay the consultation fee of £150 but the insurance paid for the steroid injection (£50), this was when he diagnosed psoriatic arthritis as he examined my scalp at that appointment and found I had psoriasis in my scalp, when he asked if there was a family history I confirmed that my mother has psoriasis on her scalp and my son has it really bad on his legs and trunk of his body, this was when he prescribed me with methotrexate but, I had to have a chest x ray first which also cost me £110.
Because of the MTX and having to have blood tests every 2 weeks initially, I had to pay for all of this, MTX in my normal chemist cost £9.50 but in the chemist near where I live they charged me £19! The blood tests were £191 x 3, it was so annoying as my insurance year starts from 01/12 each year and I thought the insurance would pay for the blood tests but they said as they were just routine this wasn't covered! (any excuse to not pay eh) I can't remember if I ended up paying for 3 lots of MTX or 2 but.......
Anyway, in January the consultant said my bloods were stable and I could go on shared care with my GP, this meant that I didn't have to pay for the MTX or blood tests anymore 😀.
I e-mailed the consultant this week as the pain hasn't improved after 16 weeks of MTX and I'm assuming due to the increased dose over the last 6 weeks I'm feeling more sick, giddy and more tired than usual, he rang me and said to stop the MTX and to make an appointment to see him as he's going to give me different medication, when I asked such as what he said possibly leflunomide, to be honest, I've been reading up on this and I'm slightly worried reading all the possible side affects and how it stays in your system for up to 2 years when you stop taking it and sometimes you have to have it washed out of your system. I'm not sure if whatever he prescribes whether I'll have to pay for it again initially and if I'll need further blood tests until I'm stable that I'll also have to pay for again, I read somewhere that with leflunomide you have to have blood tests every 2 weeks for 6 months! (I'll be living in a tent if that's the case 🙄) although if it's like MTX I'm assuming it'll only be until I'm stable and then the GP will issue it.
I'm wondering if he thinks I'd be better off on biologics which I understand are really expensive as he's asked my GP to add me to the NHS list, (I found out this week this hasn't been done!!! from the consultants letter sent on the 20th January to the GP) I'm really angry as I've lost a whole month or more, the consultant said the wait is at least 12 months anyway!
Hope what I've put above doesn't put you off but at least you've got the info, even if you just see the consultant once it should help in getting a proper diagnosis if they look at your previous history.
Take heart, I had a similar experience with the first rheumatologist I saw who even wrote to my GP implying that I exaggerated the pain. Then I went to another rheumatologist privately and showed him the letter from the previous rheumatologist. He advised me to complain and wrote to my GP asking him to refer me on the NHS which he did and I have not looked back. Funny thing is that 3 years later, I received notice of a follow up appointment with the useless rheumatologist! Needless to say, I declined. It is very demoralising when you are treated so badly but hang on in there, there is an answer for you. xx
I am so sorry and so angry on your behalf! Honestly words just fail me right now. I really do hope that the appointment with a private rheumatologist is a far more productive one for you. Health care does seem a real postcode lottery and really ought not to be this way at all. I am so sorry you have a bit of a wait to see the private consultant too. You have already been playing the waiting game for so long. I really do hope that things start to change with your health care for you. Please do keep in touch with us and know you are in my thoughts. I feel utterly useless but always here to offer a listening ear at the very least. x
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