What would you think of this?: I was diagnosed a... - LUPUS UK

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What would you think of this?

DaftCat profile image

I was diagnosed a couple of months ago. In Nov 2018 I had bloods which showed my CTD screen at 1.6 and dsDNA at 14. These are the bloods that diagnosed my lupus. It just took some time from then until my appointment to get the results. I was sent away with hydroxy but that got changed to steroids and to have the bloods done again. This was in August 2019.

I have chased and chased the results even speaking to my rheumy who told me they didn’t have them in front of them but would write to me. They wrote to me to tell me that my vit D was low and that was it.(as an aside, my GP had already let me know that it was low and I had started supplements)

Having heard no more and feeling like I was getting nowhere with what my full blood test results were, I realised I could probably get them from my Gp. Well!! The new bloods show my ANA at 2.9 and dsDNA now 54. There’s a note on there saying ‘communicate patient: needs follow up. Standard doses of azathioprine/ 6-mercaptopurine are appropriate. ‘

We are now October. I feel fobbed off and let down. I have had to chase all this up AND arrange an appointment with the hospital so I can go back sooner rather than later. The only ones who have been helpful are my GP surgery. As someone newly diagnosed and scared I don’t feel hopeful that I will be kept well. Please tell me this isn’t the norm!

21 Replies

DaftCat I am sooo very sorry this is happening to you. If you need to, and can, change doctors. I had to change my Rheumatologist and it set me back a lot of wasted time, but in the end, was worth it, I honestly think that whereas doctors use to become such because of a desire to help

others, now a-days so many are chasing the dollar, and status. Unfortunately big pharmaceuticals and insurance companies also have too much say in our care, instead of our doctors.

Best of luck DaftCat. That’s just awful, and I’m so sorry. Where’s the compassion?

DaftCat profile image
DaftCat in reply to

Hi Brooksidecourt. I’m in the U.K. so under the NHS which I won’t knock as we are lucky to have it but I am incredibly frustrated about it all as you can tell. They say stress is not good for Lupus yet this scrabbling about trying to find answers is stressful!

in reply to DaftCat

Again, i’m so sorry.

Even though you are under a different system, don’t you think the bottomline is profit margin? Money plays too big a role in our health?

DaftCat profile image
DaftCat in reply to

Oh definitely! I agree with you there!

Hello

What a terrible time you are having, it’s bad enough being ill without having to deal with all the extra crap.

I see you say you are in the UK. But whereabouts? England?

If you are in England you have the right to a second opinion and you can chose where you go for that opinion too.

There are LUPUS UK Centres of Excellence with Rheumatologists who specialise in lupus and sjogrens. If you are within a good travelling distance of one of these, it might be worth asking your GP to be referred to one of these C of E instead?

Also, I have bloods done regularly as I’m on an immune suppressant and I always get the test results printed off at reception. You are entities to ask for these every time. I then keep track of my own bloods and know what’s going on.

I know diagnosis can be a scary and frustrating and overwhelming time all around. I would recommend looking at the LUPUS UK publications for information which may help you be proactive in your own care.

You might have a support group local to you as well.

But this online support group is wonderful and I’m glad you found it. It’s the best place to get advice from people who understand. There’s also a search facility so you can search for your symptoms or medications you’ve been recommended etc.

Good luck! And best wishes

Wendy

DaftCat profile image
DaftCat in reply to Wendy39

I have read many of the publications. They are really informative. My cousin had lupus and sadly died as part of it. I think I will explore the centres of excellence. I hear there’s one at Guys. Are there any others that you know of?

Wendy39 profile image
Wendy39 in reply to DaftCat

Yes, a few. I think 2 in London, Bath, Birmingham. Can’t remember all off the top of my head. I’ll find the list somewhere and get back to you! If you are in London you should be able to get a referral to one of them easily.

DaftCat profile image
DaftCat in reply to Wendy39

I’m not in London but from where I live it takes just over an hour to get to Victoria station

Wendy39 profile image
Wendy39 in reply to DaftCat

There are 2 in London. University College of London and Guy’s and St Thomas’. They seem to be the closest to you. I’d forgotten Liverpool, Manchester and Cambridge but they are no good for you. Hope I’ve helped. Please ask about anything you need to. Many people here want to help. We’ve all been there.

DaftCat profile image
DaftCat in reply to Wendy39

Thank you you’ve been a great help

lupusuk.org.uk/publications/

I’m sorry you’re dealing with this. Really really tough to fight for care when you’re unwell. I live in a different country so it may be different, but I’d go to the Emergency Department, ask to be started on recommend medications, and to be referred to another specialist ASAP.

Thank you Wendy39 and maye1. I’m seeing someone else at the hospital in a couple of weeks. I’m going to take all my worries written down so I can address them. What good it will do me, I don’t know!

Wendy I’m in West Sussex. I know the department is understaffed at the moment. I think this is why I don’t feel happy as I’m not reassured and nothing feels controlled. I have other illnesses and it has never been so ‘chaotic’ as this. I do keep tabs on my tests etc, I have a folder that I keep. Which is why I knew I had to keep pressing to get the info together.

I am really sorry that you are having so much trouble with lack of care due to non joined up NHS. I’m in Scotland and I too am having great difficulty with my local NHS.

The other day I had a meltdown after hitting so many brick walls I just felt that no one cared.

My GP practice is the very worst of a pretty bad lot. It’s all about the system, a national shortage of rheumatologists and finances I think - not about innately bad clinical practice.

DaftCat profile image
DaftCat in reply to

Thanks Twitchytoes. If anything my GP has been more on the ball. He texted me to tell me about my vit D levels several weeks before I received a hospital letter telling me the same. I’m sorry yours isn’t good.

I had a mini meltdown when I left a message for the rheum secretaries. Not their fault but no one else to vent to. It got me an appointment though! I’m going to go prepared and just lay it on the line.

Wendy39 profile image
Wendy39 in reply to DaftCat

You are right. You really have to shout to be noticed. I hope they listen and help you.

in reply to DaftCat

Its horrible having to fight all the way. I’m glad you at least have a good GP - the gatekeeper role is so important these days.

For me meltdown was a combination of my GP practice refusing to let me see my wonderful GP despite having a letter from a rheumatologist I saw privately 3 weeks ago to discuss. Every time I get through after up to 30 minutes wait I’m told “computer says no”🤷🏼‍♀️. If there is an urgent on the day appointment available with a GP then I have to explain to receptionist why I think it’s urgent and then I get a tut tut of disapproval whatever the reason I give!! I swear it’s giving me a phone phobia. It’s so traumatic when we’re chronically ill.

It’s become impossible for me to report horrible or worsening symptoms. If I phone rheumatology then they will pass on messages to my rheum but she usually doesn’t respond and when she does her replies are always brisk, completely not Sjögren’s centred and anyway they are preparing to discharge me with “just” Sjögren’s despite overlap CTD.

My GP practice have a new policy of receptionists not taking appointments bookings for more than a few days ahead. They are engaged each day from 8am to 8.40 and only have one appointment daily online for one GP no one wants to see because she’s horrid!

Then on top of this frustration I got a changed appointment from dental hospital that I couldn’t attend for surgery I’ve tried to cancel. I waited in phone queue telling me I was 4th in the queue etc trying to cancel or postpone as its on Tuesday. I finally got through and explained yet again and was told that there are post it notes with my name all over the university hospital office awaiting action so they would phone me back. I said no I’ll come in myself now! That galvanised them later in the day but by then I was back in bed howling in a state of liquid pulp 🤯😳🤷🏼‍♀️

DaftCat profile image
DaftCat in reply to

That’s terrible! Our GP has appointments in the morning and you have to get in the queue at 8am but they do a different system for the afternoon where you call and you go on the duty doctors list. They will either see you or phone you.

in reply to DaftCat

Well to be honest I have either been phoned by the duty dr or seen by the one who doesn’t know me and no one likes. But it’s the long waiting to get through and then the tut tutting and guilt inducing that has nearly finished off my sanity lately.

I think they assume I’m just saying it’s urgent on a pretext now because we can’t book appointments. But if a person has rare autoimmunity affecting most parts of the body - then urgency has a different meaning. Anyway I did see the coldest, most deeply hostile GP on Thursday late afternoon and she seemed to relent when she knew I didn’t want to ask for help about anything other than intense pain and blistering scab on my lip. As she thinks it’s probably a precancerous patch becoming a Squamous Cell Carcinoma plus I may have limited systemic Scleroderma progressing, I think I justified urgent even for her!

Anyway I’m not going to moan anymore as I got given pregabalin for neuropathy of my lip and instruction to go back on chemo cream so was taken seriously at last. I think you’re going to have to push every button to make sure you’re seen by a rheumatologist soon.

Hi so sorry to hear your going through this . I’m waiting my initial appointment with rheumatologist after a positive ana and a dsdna if 700 been unwell all year really . Sick of waiting now to be honest . If I was you I’d feel let down especially if it’s a flare up and your symptomatic . I hope you will feel better very soon

DaftCat profile image
DaftCat in reply to Harry19

I’m sorry about your situation Harry19. I hope you get an appointment ASAP. It’s incredibly unfair that we are being left waiting and wondering like this.

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