consultants - again

[Brychni]

Hi all

I have just had a fairly constructive appointment with a new GP at my surgery who read the most recent letter from rheumatology and said it was 'pointless'. I had to agree!

Anyway, she has ordered blood clotting blood tests, pursuing once and for all the antiphospholipid antibodies that were found during my first blood tests. After being told that would have to be monitored nothing has ever happened so I am hopeful that I am on a more sensible track and closer to getting the best treatment.

I am considering going private again to properly look into what is looking more and more like Hughes syndrome and the consultants listed on the APS website are

Jeremy Camilleri

Julian Nash

Ceri l Rhys Dillon

You may remember that I saw a consultant (not listed above privately and it was an underwhelming experience and a bit of a waste of money. However, I have heard good things about the above three and wonder if anyone here could add their experiences, if any?

Antiphospholipid antibodies have to be tested for in sequence over a period of 12 weeks (I think) and although I am heartened by this new GPs pursuing this at last, I'm also aware that she hasn't mentioned this monitoring and frankly, I have lost all faith in the NHS consultant I have been seeing.

Many thanks

[Neonkittie17]

Good luck. 🙏🏻💗 It can be so draining to instigate and attend all these blood tests but we need to or won’t be able to resolve or improve anything.

[springcross]

I hope this new broom sweeps clean for your Brychni, it's about time isn't it - you can but hope. 🤞 x

[Marionfromhappydays]

Really good you are getting somewhere 👍

Its a struggle isn't it, I cant help with the private consultants but It seems if you want something done alot of people are going private. There's a programme in BBC I think about it tonight

[Tiggywoos]

Hi lovely I saw dr Nash privately through my insurance . I won’t lie .. he certainly didn’t go to charm school 😉, BUT he tested me for scleroderma which no one else did and he was incredibly thorough and thinks “outside the box “. That was the nurses words .

Just to warn you though the tests are really expensive but it sounds as though you are clear on what you want … which I wasn’t as I didn’t know what was wrong with me . He wrote a few letters to my local nhs hospital telling them they needed to see me (which they ignored) but that wasn’t his fault he tried .

Take care and good luck 🤞 xxx

[Tiggywoos]

As my husband always tells me .. you don’t have to like these consultants they just have to be good !

[StormySeas]

Hi thereI have APS too, it was diagnosed years ago, pre RA I think. (I thought Hughes Syndrome was merely another name for it) I know little about it, only that it’s flagged on my notes.

Not sure I had a sequence of blood tests to inform this diagnosis either…

[Brychni in reply to StormySeas]

Hi there Stormy - well it is a major cause of stroke in younger people, often late miscarriages, headaches and migraines (me), joint pain (me) epilepsy (me when I was a child). You can't take anything with oestrogen (me in my 20s and 30s could only take mini pill as the combined caused banging headaches). Also Raynauds (me).They are meant to test a few weeks apart, three times (?) Of course, no one had bothered to follow my positive result up in the space of 2 years even though I have asked several times.

[StormySeas in reply to Brychni]

Thanks Brychni, I had no idea. Hope you get some answers from him. Is it the case you think you have both RA and APS, or do you think the RA is actually undiagnosed APS?

Hope you manage to insist on more tests, and get to the bottom of things. If you’re lucky enough to live near St George’s you might even get a referral.

[Brychni in reply to StormySeas]

Hi Stormy - my diagnosis is Undifferentiated Inflammatory Arthritis which was diagnosed by ultrasound on my wrists - even though I had no issues with my wrists. As I understand it this means early evidence of any kind of inflammatory arthritis including RA, psoriatic arthritis, possibly lupus and ankylosing spondylosis. RA has pretty much been ruled out at this stage and the latest suggestion is PsA. It doesn't matter as the initial treatment is the same: hydroxyc.I also have joint hypermobility for which there isn't a pill and it appears that my skeleton is becoming totally dysfunctional and there's nothing I can do about it.

I'm honestly so sick of it all. I suppose I never thought in my wildest dreams that I would ever be 'ill'. Here I am, most days really feeling like my life is not worth living. I'm in pain all the time and health care has been clunky and disjointed, expensive and for the most part hit and miss.

I've noticed that in my appointments I don't get 'examined'. the only person who has laid hands on me was the accupuncturist the other day who told me that the huge lump on my shoulder is typical of an serious injury (have never injured my shoulder) or hypermobility and she felt my muscles and confirmed that indeed the pain in the side of my neck is connected to the shoulder issue. All the other consultants and GPs I have seen just look at me, nodding and making little noises. I find it so rude, especially when the consultant I saw privately made daft jokes and stupid assumptions. Paying for someone to take the piss is the limit.

There's no joined up thinking.

I can do very little and now spend most of my time at home doing housework and even that is difficult with my bad arm.

Sorry, but things are not improving and I am feeling there is no hope on the horizon. xx

[StormySeas in reply to Brychni]

Goodness, you poor thing. That sounds terrible, worse in fact - infuriating, especially the bit about the private consultant taking the piss. The very least you expect is care and consideration. That's appalling. Trouble is when you're at your lowest ebb, you don't have the energy to make a fuss about things like this.

I know how you feel about life not being worth living. I spent a few years like this at the start of my treatment, which also felt disorganised and disjointed. Initially they thought I might have lupus, but I was diagnosed with palindromic RA and RA 🤷‍♀️. I also have psoriasis, but apparently not PsA. (I asked how come that wasn't my diagnosis but the consultant said it didn't matter as treatment is the same.)

I don't know what to say really, only to encourage you to keep going back and back to the GP until you get some more help. I think that saying your life isn't worth living is the key. That seemed to be the point at which my consultant finally took some more action. Do you have an NHS RA consultant? RA departments sometime have a help line where you can bypass GPs, have you tried that? I really think you have to persist until you get some help - sometimes it's only if you shout loud enough that anyone hears you.

Hang in there Brychni X

[Garnacha]

Hi Brychni

I'm under Dr Camilleri, I first say him in January 2020, the only thing I'd say is he arranged for blood tests and an MRI which was covered by my insurance, but only arranged for the MRI to be from my waist down when I was also in a lot of pain in my left elbow and right shoulder.

I paid to see my husbands Chiropractor in August as due to Covid I thought I may not be able to see Dr Camilleri, who suggested I have a scan of my elbow and a guided steroid injection, on the scan they could see I had a big build up of calcium, inflammation and a spur.

I saw Dr Camilleri again in November 2020 as the pain was getting so much worse and gave him the results of the recent scan, he examined me again and following discussion on family medical history and seeing I had psoriasis on my scalp said I had psoriatic arthritis.

To be honest he's been amazing, when things have gotten really bad, I've e-mailed his secretary and 9 times out of 10 he's given me a ring to discuss the problem and what I can do, eg. increasing the medication and writing to my GP to tell them of any changes.

Using information I've read on this forum eg. triple therapy and saying to him about it he agreed to introduce a third DMARD (so on Hydroxy, MTX and now Leflunomide).

I contacted him again recently and again he rang me and said he needed to see me, he's increased the dosage of Lef from 10mg to 20mg, I mentioned Sulfazine, hes said for me to give the increase in Lef 3 months and if no improvement we'll substitute it for the Sulfazine (I know that's not the correct spelling 😂).

Sorry I've waffled on 🙄 but I do recommend him, although it's irrelevant, he has only got one arm, the other finishes at his elbow, it doesn't affect him in anyway even giving steroid injections but just so you're aware.

Deb x

[Brychni in reply to Garnacha]

Hi Garnacha - I've DMd you. x

[Emye343]

Hi Brychni,Both my sister and my brother have been diagnosed with Hughes syndrome. I was tested for it but came up negative. My sister had 5 miscarriages but I didn’t realize that was connected. The only treatment they received was heparin shots before long distance flights.

[Emye343 in reply to Emye343]

Oh, my brother also had a major stroke in his early forties - I didn’t realize that could be connected either…certainly explains a few things.