Update on my Dermatology Appointment, with my Knight, 13th September

Well, I finished my steroids (2nd 5 week course - got me through the summer and my holiday in Italy - made a world of difference to me this summer!) last Tuesday 13th September and am now up to 3 grams a day on the Mycophenolate Mofetil. I had to wait 2 hours to see my Knight in clinic. Appt was 4.40pm and I went in at 6.40pm. He couldn't believe that I had waited to see him. But that appt was so important to me. It was his last day working for my NHS area health board and therefore he had a very busy clinic. I spoke to a nurse whilst I was waiting and she told me that they hadn't managed to find a replacement Consultant Dermatologist and that the clinic was going to be run by the lower grade doctors in the Dermatology Department. So I knew that I had to just ask him if I could see him in Cardiff instead. I am more than happy to travel to see him. (He said he could see that, as I had waited 2 hours to him that day). I trust him and have faith in his ability and knowledge of Lupus. He explained that he had tried to move some patients with him, in order to lessen the burden on my NHS area health board but that they blocked it and he didn't agree with their objections and was following it through. I told him I didn't want to be left in the care of anyone else. I said that it was nearly 3 years since my diagnosis of SCLE and that he was the first doctor I had seen that understood the disease and got me and my symptoms. I said the others didn't understand and didn't understand my medication at all. I said this is a chronic condition. I need a doctor long term that can help me. He thinks the best thing for me to do is ask my Rheumatologist to refer me directly to him. Then it wont seem like he is "poaching" me. I hope my Rheumatologist agrees!!!!! In the meantime he told me that there is a GP at my other hospital, a GP with a specialist interest that can monitor my bloods on the MMF etc. Then I can hopefully sort out appts with my Knight in Cardiff when I need a review or more serious help etc. I really hope that my Rheumatologist will cooperate with my request and refers me to him for his list in Cardiff. And that no one blocks it. Came out of the appt at 7pm and it was 7.40pm byt the time I got home - shattered!!! I have everything crossed! Why is nothing easy????

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  • Thanks so much for this news Wendy

    You INSPIRE me

    WAY TO GO πŸ‘πŸ‘πŸ‘πŸ‘πŸ‘πŸ‘πŸ‘πŸ‘πŸŒŸπŸŒŸπŸŒŸπŸŒŸ

    Can't wait for your next news bulletin....

    In the meantime: πŸ€πŸ€πŸ€πŸ€πŸ€πŸ€πŸ€

    πŸ˜˜πŸ€— coco

  • Thank you coco! 😊 Xx

  • I hope everything works out for you. When my new primary care doc listened to my extensive list of complaints (I was tired of health-care professionals looking at me like I was a nut! So I pretty much kept it to myself.) he actually took one and a half hours with me! He parted me out to dermatologist, neurologist, orthopedics...I have a tumor on a finger...AND a rheumatologist!!!!!!! Thank goodness he listened! A doctor about ten years ago checked me for Lupus. Multiple joint pain, constant blood in urine, positive ANA that than it would be negative back and forth same with ESR. FINALLY I WAS TOLD LET'S PUT THIS ON BACK BURNER, YOU DON'T WANT LUPUS ANYWAY!!!😢

  • It took five months to get into rheumatologist!

  • Thank you for your reply. I agree it can be very frustrating. Luckily for me I have a diagnosis - from bloods and symptoms - from November 2013. Thus diagnosis is SCLE and no one has questioned it. It was actually backed up by a skin biopsy in January 2016 as well. My problem is that my rheumatologist doesn't seem to know what to do with me and luckily for me I started seeing a dermatologist this year - first appt punch hole biopsy on the nape of my neck in January 2016 - and he understands lupus, my meds and my symptoms - but he has now left my hospital. It always feels like one step forward and two back. I get frustrated that rules and regulations and paperwork etc all get in the way of patient care! Rant over. I am also waiting to see a neurologist and Orthopeadic surgeon. Waiting lists between 30-38 weeks. Good luck with your doctors.

  • HURRAH: glad you got in with this good medic! (But, ARGH: on the back burner....NONONONONO....glad those bad years are in the past)

    Yikes, McLaughlin: I had a tumour in my finger too....haven't met anyone who has my type: chondrosarcoma (a rare tumour of the cartilage, whichis a connective tissue of course πŸ˜‰) is this your type of tumour? 😳...all medics told me this was arthritis...for 14 years, while it grew & grew + became malignant....finally was recognised & given emergency amputation...

  • Barnclown, you never fail to amaze me. You've been through so much. x

  • πŸ€— that's the nature of infant onset lupus: I've had nearly 63 years to get through this stuff πŸ’ƒπŸ’ƒπŸ’ƒπŸ’ƒ

    Am with you in spirit wendy: that's a lot of waiting you're doing....counting on you being here on forum as much as poss: hoping you'll rant as often as you feel the urgeπŸ˜‰πŸ˜˜πŸ€

  • I have a 2nd MRI on my back and head on Monday. I guess this is to try to establish the cause of my syrinx and to see if it has grown. But no real explanation. If I get fast tracked to see Neurosurgeon I guess I'll know it's more serious than they originally thought. I am VERY anxious. X

  • You'd be V unusual if you weren't V anxious...I would be too in your shoes....and I'd be talking my anxiety down as much as poss here on forum with friends who REALLY understand....it's so important you're getting close attention from these consultants via this imaging....and, whatever this leads to, we're here beside you each step of the way. Courage. πŸ‘­πŸ‘­πŸ‘­πŸ‘«πŸ‘­πŸ‘­β€οΈπŸ€

  • I went in for pre-op visit last week. The surgery coordinator is going to call so we can get date set up. I will let you know the results of my pathology report when it comes in.

  • πŸ€πŸ‘πŸ€πŸ‘πŸ€

  • Hi Wendy

    Fingers tightly crossed that your Rheumy will refer you to Knight Dermy and you can stay with him!. I know how important it is to be able to stay with medics that understand and are willing to treat. They have to be stuck to like glue. Sounds a good plan that he recommends that GP who can oversee MMF. That's important too!. Hope it's starting to work. Looking forward to your next update Wendy. X

  • Thank you misty14. How are you doing? x

  • Hi Wendy

    I'm a bit flarey as I've reduced the steroids to 9mg daily and body doesn't like it!. Thanks for asking. Glad the extra steroids got you thru, hope Myco soon kicks in. X

  • It's so difficult isn't it. That elusive balance with meds. I've been off the steroids for a week now and I've napped the last 3 days in a row. Fingers crossed the MMF kicks in very soon, been on it now for 8 weeks but the first 3 were only 1g a day and I've slowly increased to 3g. Wish I could stay on the steroids long term, but without any side effects! I hope you feel better very soon. Best wishes. x

  • Hi Wendy

    It can take years to get the balance of meds right!. I so agree with you about the steroids, spend so much time worrying about the side effects but feel torn because they're very effective. I hope the extra dose MMF kicks in soon, should do and it's a good drug. Fingers crossed X

  • Hi hope all goes well with you being able to go with doc heading to Cardiff. Still working on getting back to rheumatology, I live in hope that someone may understand that lupus is not just about a rash. I hope your feeling OK since finishing steroids....working away from home so wishing you well ML

  • Thank you! Let me know when you are home and we will arrange that coffee. x

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