This morning I attended my appointment at Guy's hospital in London. The travelling wasn't as bad as I had anticipated. I decided to park at Stanmore station and get the train straight through to London Bridge.
It was going to so well until my train was declared defective so i had to get off an get the next one. The only problem was that meant I had to stand up for 12 stops! I then took a wrong turn out of the station so had a bit of extra walking.
I eventually found the hospital. I saw a consultant called Dr Sanna, he was very nice. We discussed what had happened since diagnosed. I must admit thinking back to 3 years is very hard. He had a look at my arms and knees ect.
He said I have a very mild form of lupus. I have always said this myself as my main problem is joint pain which is from my rheumatoid arthritis. He agreed with the treatment from the hospital. He has told me to take 4 vit d caplets a day, 1 hydroxy and has given me more steroids to ween off slower ! I then had bloods done and he said he can see me in 6 months just to see how it is going.
I am glad I went as he told me that even in hydroxy doesn't give me much benefits its good to take to help prevent further lupus damage. He was very good with saying that the steroids 5mg is a big drop and we need to avoid a flare so i am really pleased he gave me more and reducing my 2.5mg instead.
It has gave me peace of mind that my hospital when they can be bothered to actually see me are giving me good meds to help. So now it is just a waiting game to see if the leflunomide + hdroxy will help. He said it can take 3 months. I've been on leflunomide for nearly a month now. So having the steroids is key for the overlap period in between. I think i next time i will have some lupus questions to ask. I wasn't really sure what was going to happen at the appointment so I wasn't to prepared. I was worried about the travelling!
Written by
LouLamb
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Thank you for sharing your experience. It is great to hear that you feel reassured following your appointment and I hope that the specialist care will help you more in getting your lupus as well controlled as possible.
I'm sorry you had a bit of a nightmare with the trains. Do you have one of the blue 'Please offer me a seat' badges? They are available for free for people living in Greater London and South East England and you can apply at tfl.gov.uk/transport-access.... If you aren't living in one of these areas I have a supply in the office and if you send me a private message or email me at paul@lupusuk.org.uk with your address then I can pop one in the post for you.
Well done with coping with such a big day and tough travelling. Not easy seeing a consultant we don't know but so glad it's given you peace of mind that locally your getting the right treatment!. I didn't know you have RA so I'm specially pleased that he said your lupus is mild because there both tough conditions!.
I'm really pleased too he said to reduce the steroids slower and has given you 2.5 mg tablets. This is how I've done it and it's much kinder to the body !. Do hope the new drug works soon for you . Keep us posted!. Rest up now, job well done. Xx
Well done Lou on getting to London in that lovely red car, I’ve been driving for many years and don’t like driving in London, especially near London Bridge which is a nightmare.
I’m glad you made some progress with your condition and next time you can ask more questions, keep a diary in a notebook and then you can always use it to jog your memory and look efficient when doctors see you.
Slower release on the steroids sounds good.
I have a badge which says ‘please offer me a seat’ when you are travelling.
Keep well I expect you’ll need to take it easy for a few days.
Glad it went as well as it did. I have problems with travelling too but I've found that once I've done a journey once it gets easier, so hopefully your next appointment won't be so traumatic. Good luck.
So glad all went well for you , i hope you are not too tired today 😀. You seem to have a doctor that you can trust , best wishes PS I really hate travelling as well, it’s exhausting xx
Well done Lou and it’s good to look ahead about the travelling times. At either end of the day, and especially going home time, most commuters are tired and understandably grouchy . I drove in London many moons ago and it was really bad then. Wouldn’t dream of it now,
I’m glad you had such a positive appointment with a doctor who understands and explains x
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