Contacting

[CaviarRed]

HelloWhen you have your first appointment (I was GP referred) your Rheumatologist should give you a helpline number to call if any issues 🩷💜

[CaviarRed]

Sorry there was someone asking how to contact Rheumatologist.

[CecilyParsley in reply to CaviarRed]

It was me but I have been under a Rheumatologist for 15 years. It was more a question to find out how people in different areas of the U.K. make contact as I was being blocked by a secretary. Thank you for replying though x

[dg70]

In England you should get a rheumatology advice line number where you leave a message and a nurse or rheumatologist gets back to you within 48 hours. Mine are usually the same day. They will book you in or send you to your gp if they feel its not lupus related. Around the country the quality of help may differ and I understand in a lot of Wales there is no helpline.

[CecilyParsley in reply to dg70]

Hi there is a helpline in Wales but 7-10 days wait time in my area which is not much good in a situation whereby your GP won’t touch you and A&E have a critical illness and injuries only and an approximate wait time of 20 hours xx

[dg70 in reply to CecilyParsley]

Our Lupus group was talking about the Wales problem and that they are trying to get things up to standard there for Lupus care. It sounded awful for some, I feel really bad for you, what a nightmare.

[CecilyParsley in reply to dg70]

Honestly there is little support here. My new Rheumatologist of 2 years now is really lovely and he listens and tries his best to help but the GP` s seem to just wring their hands and certainly the secretary`s are unhelpful. I have only had one experience of the Helpline some years ago and I got a call the following day to tell me my then temporary Rheumy (who had given me 600 mg Hydroxy and when I developed macular odema said I did not have Lupus or Bechets, I just had Fibro and hysteria) had discharged me . She was quite guarded but said I should go and see my GP. My GP rang me to tell me that she had emailed expressing her concern re my treatment overdose and got a response “ I am discharging her cheers Rob” Thankfully she was furious and complained and a week later I was seen by a different Rheumatologist.

I feel certain that my new Rheumy is different and wants to change patient care but he is up against it with others who work very differently. I sincerely hope that he doesn’t burn out and move on.

[dg70 in reply to CecilyParsley]

Sounds like you are having a fun time in Wales. I am in the Cardiff Lupus group but live over the bridge about 40 mins from Bristol in England. It's so different here but I am very lucky to go to Bath which is a centre of excellence although the same rules should still apply in Wales but I heard that you are losing Rheumys all over which puts so much pressure on the system. At least a couple of ladies have said they have had to hop the border for private or nhs care in bath or swindon. I know several Lupus Uk ladies are working on getting things changed in Wales but you don't just need more Rheumatologists but ones that specialise and want to specialise in autoimmune conditions. With more fighting for care and more being diagnosed with autoimmune conditions I hope things will improve soon but that doesn't help when you need care and don't get it. 600mg Hydroxy, goodness that's a lot! I'm sitting here waiting for a call, I've had another allergic reaction to medication and my lips are huge and sores inside my mouth are agony. I'm praying for steroid treatment this time as I don't think I'm fighting this very well. I remembered its easter so I'm hoping someone calls back today or its a weekend of agony before me. I've not had oral steroids before but steroid creams always work wonders on my rashes.

[CecilyParsley in reply to dg70]

I am so sorry that you are suffering. After 15 years of suffering mouth ulcers my current Rheumy has been the only one to properly address them. He prescribes soluble Prednisolone, soluble antibiotic and Nystan liquid. I mix the three with boiled water and when it cools swill it around in my mouth and spit it out, then repeat four times daily. It helps so much. Last time he gave me a steroid injection to calm things down for me which also helped but sadly not for long . Just no one has helped the absolutely dreadful pain and swelling if the genital sores though. It seems to be always someone else’s role.

I sincerely hope you get some help before the weekend. Xx

[dg70]

I've had them too. Luckily Bath has a dermatologist who has a vulva clinic and I've just started seeing her. She would be absolutely over the moon to see you. She is dying to have a patient with vulval lupus. I may let her down as it was all candida which I had for over a year. She's desperate to do a biopsy just to have the chance of a case of vulval lupus😮😆It was the canistan to deal with the candida that triggered this latest flare. I talked to the GP today and have my first go at pred to deal with this. Hopefully it will help. The best thing I found and gentlest thing are vagisil wipes for down below when its stinging and sore. They are just so soothing, no sting and they keep the soreness away for an hour or so. I have bought the chemist shop for down below and for my mouth! What we girls deal with and half of this stuff is not on prescription.