Help!

[Juejue2005]

My daughter is 20 and we suspect she has lupus as has recently had a positive anti-dsDNA test. It began with what we thought was a sun allergy about 5 years ago, where she got a rash whenever she was first exposed to the sun. However, she has had some very scary symptoms lately which are unfortunately occuring now on a weekly basis. Firstly, she is getting a skin flare up probably about once a week where her skin turns bright red and is hot to touch. Secondly, she is getting quite severe bruising. She does play football and gets bumped a lot but the level of bruising she gets is severe. A recent blood test flagged an extended prothrombin time. The blood tests were done in A&E a few months ago after a particularly bad skin flare up but nobody ever contacted her to tell her she'd had the above abnormal test results. It was only when she went to her GP (after another flare up) that they mentioned the blood results. She has been referred to rheumatology through the NHS and has had a letter saying she'll be seen in 62 weeks!!! Which quite frankly is unacceptable. She's since been to see her GP again and asked for an urgent referral but it's been 3 weeks now and she's heard nothing. Has anyone been to a private rheumatology clinic? Is she likely to get treated quickly? I have attached a picture to show how bad it is (it would only let me upload 1). Thanks

[Hidden]

Hi Juejue

Oh goodness, that’s awful, your poor daughter. You must be so worried and stressed seeing her so poorly and feeling helpless at the waiting times. Absolutely, as you say, she can’t wait over a year and as she’s becoming more ill now, she really needs treatment. Especially as the earlier treatment is started the better. Does the GP have an idea how long an urgent referral would take to be seen? So, if the urgent referral isn’t likely to provide an appointment as soon as you’d like and if you are able to self fund - yes, I’d suggest you do get even an initial private appointment. Lupus UK have details of Lupus centres of excellence on their site in case you are located near one of those - also there’s things that are helpful for a first appointment, plus there is lots of useful information on Lupus generally.

I can’t comment on a private Rheumatology appointment personally, but many of the lovely people on here will be able to help you on that score. I’ve seen another specialty privately, pre pandemic and in my area my wait time was around 7 days (guessing it’d be longer now). Once you know where or who you’d like to book with they’ll be able to advise you on wait times to help you make your final decision as to NHS or Private.

Sounds like you’ve everything documented, photos ready, blood results etc. Also, as appointments go so quickly, make sure you’ve a list of the most important points you want to make. Although, I’m guessing on blood tests and photos, they’ll have a good idea what’s happening.

I just wanted to send you and your daughter a quick message, so you know you’ve been seen. If ever you’ve questions, this is a safe space to post, someone will always be not far away, if you need.

I’ll leave you in the hands of our other forum friends, who’ll have plenty of words of encouragement and wisdom!

Let us know how you get on.

Take care ✨

[Juejue2005 in reply to Hidden]

Thank you so much for your lovely reply and for the advice. We're based in York and there is at least one private clinic nearby, I will contact them tomorrow. I just want her to get the treatment she needs before it potentially escalates. Thank you again for taking the time to reply, I really appreciate it

[ancoats23]

Waiting list at the centre of excellence in Manchester is 15 months + - but keep pushing your GP - the hospital should tell you this anyway. Private consultations are available in some areas - same medic - £250+. Hope she feels better soon from this flare up

[HealthCoachLupus]

Sorry you and your daughter are having such a hard time.In the past I have gone to see specialists privately and then after first session got them to see me through the NHS. I never knew this was possible, but during my private apointment I explained I really could afford it and I only went private due to being desperate! I'm in Scotland so I'm not sue if it's the same where you are.

For me it was around a 2 week waiting time to see a private rheumatologist. All you need is a GP refferal and then phone up to book. I used Spire in Edinburgh 👍

[Juejue2005 in reply to HealthCoachLupus]

Great, thank you so much for the info. Hope you're getting the treatment you need now

[Hamptons]

Following a flare prior to diagnosis, I saw a private rheumatologist at London Bridge hospital who said I had an autoimmune disorder and then recommended my GP referred me to my local rheumatologist. I had been through most departments by then with investigations. Sadly, the waiting lists post Covid are high and even patients under rheumatology are waiting long periods between appointments. A private consultant could at least provide a treatment plan but you would have to pay for prescriptions as well.

For me, going private just gave piece of mind as I was struggling with mobility and fatigue whilst trying to do a big job in a school. Once I had a symptom that could be seen I was keen to get it looked at so I could have the diagnosis I needed. He did not prescribe treatment but gave a letter of recommendation that got the ball rolling.

Good luck, with everything.

[Juejue2005 in reply to Hamptons]

Thank you so much for taking the time to reply. I hope you're now getting the treatment you need

[loopy-lou]

I am so sorry to hear of the dreadful time your daughter is having. I totally agree the waiting time is totally unacceptable. I have had similar in Kent regarding a waiting time of 6 months. It was the light at the end of the tunnel as I have badly controlled lupus with constant flares. The appointment ended up being by phone and was a complete waste of time. What I have done is contacted The Nuffield regarding a private appointment as a one off. I have found another rheumatologist who used to work at The Louise Coote Lupus Unit at Guy's Hospital in London. They have quoted £260.00 for a 40 minute appointment. The wait time is around a couple of weeks. In his case apparently I don't even need a referral letter from my GP. From what I understood some consultants do prefer a referral letter from the GP. I am going to take current / up to date blood results for another opinion of a treatment plan. I have spoken to his secretary who told me that he would be able to refer me to his NHS hospital list. I am hoping this will be better .

Another thing I would suggest besides asking for an urgent referral is ring the hospital at least once a week to see if they have had any cancellations.

Good Luck.

[amyamyamy1]

I have systemic lupus. I was very unwell and although I had been referred to a Rheaudmatolagist they cancelled the appointment two days before. I contacted a private Doctor, I had to pay for two initial appointments but he diagnosed me and tested me. As I have no private health insurance I have been under the NHS for about 8 years for my condition. I was so grateful for his expertise as I felt like I was literally dying on my feet and could hardly walk or move my hands. It was worth the financial investment without a doubt.

I now manage my condition with methotrexate, steroids, hydroxychloquine and mepacrine. I have flares still but I can manage them by resting up and looking after myself.

I hope this helps you. X

[Nellons]

Hi, for my daughter we went private initially and then that consultant saw her through the nhs route. So we only paid once. By going private it got our foot in the door to continue with same consultant but through nhs . Hope this helps.

[Turquoise-1]

A Dermatologist can also diagnose Lupus & other diseases/conditions etc.

My GP referred me to both a Rheumatologist & Dermatologist when I first consulted her regarding skin rashes & other symptoms. I have SLE (Lupus).

Rheumatology appointment came soonest but I have also seen a Dermatologist who has recently done skin biopsies to determine the precise cause of the skin & scalp issues I have.

I too have black bruising which GP initially suspected Leukaemia, but blood tests did not confirm; He decided it was possibly caused by Naproxen or Lupus related…..still none the wiser.

Whilst awaiting Dermatology appointment I booked a Private referral with a Dermatologist at my local Nuffield Hospital. The availability was within 2 weeks, it was £195 for 20 minutes. The appointments are quite straightforward to arrange directly with them, but they did ask if I could provide them with a referral from my GP.

I ended up cancelling the Private appointment as my NHS one arrived which wasn’t too far away.

As a retired Paramedic I suggest she goes to A&E again as I’d say she needs medical attention due to the risk of sepsis. Request an on call Dermatologist or Rheumatologist see her, be it Senior/Junior Registrar/House Surgeon/Consultant or Advanced Nurse Practitioner. I know it’s a pain waiting at A&E but she looks as though she’s suffering terribly.

Also, her GP should be able to expedite the Rheumatology referral.

All the very best to you both xx

[Mctd]

Yes, yes go private! I had to in the end and it was the best thing I ever did! I didn't get anywhere with my GP, they didn't seem to know what was going on and Lupus/MCTD was never considered... I saw the consultant twice and got a diagnosis and treatment. It was such a relief.

[whisperit]

just to add a little to what others have said:

When I was first referred for a rheumatology assessment under the NHS, I rang the local rheumy department to check on the waiting time and which consultant I'd be seen by.

The answer was "about 8 months and Dr X". I asked if Dr X also worked privately. They said yes, but I'd have to speak to his private secretary for details.

That was easily done, and I arranged to see Dr X privately the following week (!) for around £200

On the day, he diagnosed me and wrote a script for Hydroxycholoquine and steroids. He said from then on, I'd be on his NHS list and scheduled a follow-up on the NHS a few months later.

As you might already realise, direct calls to specialist departments and/or consultants' secretaries are often the best way to sort things out.

Hope all goes well x

[Juejue2005]

I'd just like to say a huge thank you to you all for taking the time to reply and for all your advice! My daughter is now booked in privately. Unfortunately she still has to wait until the end of May but still, it's miles better than waiting over a year! 😊

[redredblue in reply to Juejue2005]

Hi,

I see you've had loads of great suggestions from others so I won't add to it. I just wanted to say that if she is diagnosed with Lupus, she's welcome to message me anytime. I am also 20 and have had lupus for 5/6 years & I know it's all very overwhelming when diagnosed and is nice to have someone of the same age to chat, or vent, to.

Hope it all goes well

[Juejue2005 in reply to redredblue]

Hi, so sorry, I missed your reply somehow. That's such a kind thing to offer 😊 thank you xx

[Juejue2005]

Hi, just to update you all, my daughter received an NHS rheumatology appointment a week before she was due to attend her private one. So we went to the NHS one. The consultant explained that a test they'd subsequently done, which is more sensitive for lupus than the dsDNA was negative.

I have attached a list of the results considered by rheumatology.

She also said that because her flare ups lasted minutes/hours rather than days, it wasn't consistent with lupus.

We explained to the consultant that the flare ups happened after any exposure to the sun and when my daughter becomes too hot but also happened randomly too. She didn't see this as significant. We showed her loads of pictures of various flare ups, which she asked her senior to look at too. The consensus was that the issue was not their domain and decided it was more a dermatology issue. They discharged from rheumatology then and there with no further investigations.

She has now been referred for a dermatology appointment and, you guessed it, the waiting list is 12 months + all the while my daughter is still struggling with this, with no answers.

We're now left wondering whether to 1) seek a second opinion from a private rheumatologist or 2) arrange a private dermatology appointment. Does anyone have any advice on this please?

Also, I don't feel I mentioned all symptoms in my original posts so here's what's she's experiencing:

- Skin flare ups (as pictured) where the skin is extremely red and hot to touch.

- a sun allergy which causes the above flare up, plus itchy hives

- fainting episodes - less frequent than the rash. Tends to occur when standing or too long or when too hot

- regular episodes of a rapid heart rate whilst resting (120+ sometimes) and a heart rate of over 200 when exercising - this is being investigated separately through cardiology

- recurring chest infections - 4-5 a year

- severe bruising (as pictured) - she's had to quit sports for this reason

We mentioned all of the above at the rheumatology appointment.

Any advice much appreciated 😊 thanks

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