London lupus specialist

[Haylz2109]

Hi All me again, Hope you are all as well as you can be.

So little update from me been on and off steroids since the start of this year they help a lot started hydroxychloroquine 4 months ago and thought it was helping however due to being on steroids for the first 6 weeks we realised once I finished them that they were actually the ones helping not the hydroxy.

Numerous new symptoms such as ulcers in the nose, decaying teeth, rashes and random bruises.

Managed to get an urgent appointment with my rheumatologist which was today she's now advised to stop hydroxychloroquine and referring me upto a lupus specialist in London called Dr Cruze as she explained the next course of medication will be harsher so she wants him to give a treatment plan that she can then follow here. She is also sending me for a heart scan as my heart rate keeps jumping and she wants me to have a steroid injection to last 6 weeks whilst awaiting the London appointment.

So sorry for the long post but just wondering has anyone had the steroid injection? Is there any cons to it?

Also has anyone got any advice for when I do see the specialist in London?

Just having a really rubbish time atm with symptoms 😔 thanks in advance if you got this far and for any responses 💕

[hildebeast]

Dr De Cruz is such a lovely doctor. He really listens and helps so that is great you are seeing him. Make a list of things you want to ask him. I had steroid injections while I was waiting for diagnosis and it was fine for me. Hope that's helps. Xxx

[Haylz2109 in reply to hildebeast]

Thank you for that 💕 that's such a relief to know, hopeful for what can be done going forward now 😊 xx

[CSLO]

Well you can rest assured that you'll be in the safest of hands. Prof de Cruz is a truly excellent doctor. His opening words to me were, 'Tell me everything'. He is kind, calm, reassuring and unhurried. He really knows his stuff, everything is investigated thoroughly!

My advice to you would be to prepare, write everything down in bullet form so you can stay on track and also to give him as much info as possible. Take your notes in with you and print him a copy off too! Tell him that you didn't want to forget anything. Consider when symptoms first started, what symptoms you have and include things that you may not consider related, they so often are.

List any questions you may have as well. It's far too easy to get distracted in consults and leave the room kicking ourselves that we'd not mentioned something important. I always prepare for a consult as if I'm doing a business presentation. When we're organised we're less emotional and nervous too.

I have the Depo Medrone injections normally 2-3 times a year and they are a gift from the Gods!! I take immunosuppressants but when the going gets tough the injections just calm everything down for me. I was told that they are also kinder than taking steroids in tablet form, though I haven't had to do that so I can't speak from experience. I have no ill effects from the injections but as they are slow release all symptoms gradually improve over days, they even help with my fatigue. I actually find that they help me for far more than 6 weeks. They calm a flare within about a week or so and then things can remain calm for a good while afterwards, sometimes 4-5 months.

Please don't be anxious about the jab or the consult, he'll take care of you.

All good wishes to you.

[Haylz2109 in reply to CSLO]

Thank you for that 💕 that's so good to know, definitely helps when you have a dr willing to listen! Thank you for all those points I will definitely make sure I take notes in with me as I know I'm only having the 1 appointment with him so I won't want to forget or miss anything. That's really good to know, I'm currently on tablet steroids which I've been on and off numerous times so hoping that when I do need the injection it will last me until I need to see the specialist however I've no clue the wait time as I know they have to get funding etc first so could be a while. Glad to hear that they do help you longer too so at least maybe able to go longer between doses 😊 that will definitely help and make it easier for me than forgetting if I've taken a tablet.

Thank you for all that I really appreciate it, hopefully it'll all go well now 🤞🏻 xx

[Symone1]

yes had steroid injection before, no issues with it

[Haylz2109 in reply to Symone1]

Thank you for that information, that's good to know xx

[BonnyB]

It's sounds like you are going to get great care, I'm pleased for you. Sorry to interrupt on your post but which hospital is he at and does he see private patients? X

[Haylz2109 in reply to BonnyB]

Thank you! It's no problem at all he's professor D'cruze I believe and all I know is he's at the lupus centre in London. If you type it into Google it comes up with a contact for him and he does see private xx

[BonnyB in reply to Haylz2109]

Thank you x