Waiting on Rheumatologist....

[Alidoll66]

My GP told me in October, 7 months ago my bloods showed lupus and Sjorgens and he referred me to a rheumatologist. I have had different things wrong with me for I'm sure the last 5/6 years and it was all put down to the menopause. I'm still waiting on an appointment for the hospital and getting worried as I'm not getting any meds at all to help me and it says the sooner you start medication the better to stop organ damage, etc. How long did any of you wait on an appointment, I thought I'd of been seen in weeks, not months. At the moment I have a really sore geographic tongue and mouth ulcers and I can't even eat without pain. I've went to an optician who did a dry eye test and he said I should of been on eye drops from Oct when I was first told I had the autoimmune disorder. He wasn't happy with my GP at all and sent him a letter, GP then prescribed the drops... I've also went to the dentist twice this year already because I want to keep in top of it as well, I'm back there again in July. I've done all I can and don't know what else to do.

[Treetop33]

I'll describe what a lot of people do when they first get diagnosed and encounter delays.

We all go to the private London Lupus Centre. Dr Kaul is lovely and always helpful. It costs about £275. He writes you a letter explaining what medication you need to be on. And then the GP prescribes it. Unless your GP is particularly unhelpful, they don't mind getting a private letter so long as that doctor works for the NHS as well (which Dr Kaul does).

Best of luck!

[Lily77]

I use Hyco San Extra drops which are available on Amazon. I was diagnosed at the London Lupus Centre…..it’s not far from the Shard.

[ancoats23]

I was initially on a 15 month + waiting list - but thanks to my GP this has been expedited to 3 months - please keep pestering your GP. At the moment you will be on a generic waiting list and it will not yet have been reviewed by a medic and the GP needs to get in touch with the hospital directly. Good luck.

[hearm in reply to ancoats23]

I had to wait several months to see NHS rheumatologist when I swapped from my private one. Meanwhile my gp refused to continue providing methotrexate as he didn’t have a prescription!!

[BonnyB]

That's a long time to wait. I got my appointment within 3 weeks. I know I was very lucky as it November 2020 with restrictions.

Keep phoning gp surgery. Ask which hospital you've been referred to. Ring thst hospital.

To help relieve you in the meantime.

Buy an warming eye mask to sooth eyes

Use mouthwash regularly. Sugar free sweets to help with dryness. I used to really struggle with eating befire meds. Was so dry impossible to swallow.. have you any rashes?

Can you sent an econsort ( like an email) to your gp ? That helped me as I listed all symptoms, photos of rash and basically said what are you going to do about it? This was after months of going gp. You could write to your gp. Take a copy of it.

Hope this helps a bit. I really feel for you. I know how much these symptoms affect your daily life.

Do you know your blood results? If you can find out and post them on her someone will help you understand them so you can fight your corner.

Get online access to your medical records through gp. Make gp aware in your letter to him/ her you've requested access to medical records.

Much love x

[Wangpaupau]

If you know which hospital you have been referred to email the hospital's Patient Liason Service Team, tell them how bad you are feeling right now and would appreciate an appointment to be seen ASAP.

[MusicalFurbaby]

Hi Alidoll and welcome! Sorry to hear of your troubles and all the delays, it can be so frustrating. Yes, a long wait for a rheumy seems to be the rule rather than the exception. I am in Australia and usually have to wait 2-3 months to get in to see my extremely popular rheumy (unless it’s an emergency like I’m in hospital—then he rings me immediately). Sorry I don’t have better news, but you are definitely not alone!

[dg70]

I have been private for a few years but getting so many things wrong I need a few specialists and its getting expensive. I was on the waiting list for Bath hospital who have a lupus centre of excellence for six months. I initially got a letter and told to wait for a call for an appointment. Six months later they called and I have an appointment for May the following month. For an initial diagnosis private is quicker but careful who you choose as your money may not be well spent. I paid £150.00 initially early last year for Dr Price who is a Sjogrens expert at Swindon Great Western Hospital. If you want to start hydroxy etc then maybe an initial private appointment may be worth it whilst waiting for the nhs appointment.

[Alidoll66]

Thank you everyone for replying. I'm in N.Ireland and our health service is shocking. It took the 4th GP in my practice to actually understand what my blood results meant which is very worrying. My friend spent a fortune going private with stomach problems and they never found out what was actually wrong, so that has put me off going that route, well that and the expense of it all too. The private clinics here don't get good reviews.