I had my appt yesterday to discuss how well the steroids worked and start my Mycophenalate Mofetil.
I was disappointed to see that my Knight was not in clinic - it was written on the board to greet me. My stomach sank. I ended up seeing the Prof who I wasn't at all impressed with back in September last year. Anyway, he asked had the steroids had any effect on me at all and to which I replied, a huge positive effect and gave him the details. No fatigue, no naps needed, no headaches, no aches, no pains, no diarrhoea, no skin problems, great hair, skin and nails and I was happy. He asked which immune suppressant I wanted to start I said Mycophenalate and he said fine. He couldn't find the dosage in his books and I gave him the info my Knight had given me at the last appt. He ended up prescribing 1g a day and told me to come back to see my Knight in mid August - before I go on holiday for 2 weeks and my Knight leave the NHS Trust where I see him. He said you aren't on the hydroxy as well are you? To which I said yes. And how long have you been on that, he asks? Since November 2013, to which he looks puzzled. He asked me how long we intended to be on this for? How am I supposed to answer that?
What am I going to do without my Knight? Prof said my Knight might increase my dosage. But I couldn't tell he really had no idea what to do with me. He even said, it's not for me to question why he is prescribing you this......I thought there might be a "but", but he kept quiet. He asked me exactly what inflammation I had and pointed out my bloods done on 1 July were all OK. I asked him about whether my Rheumy had told them about the results of my MRI and he found the letter and said yes, Syrinx Cyst - that was it.
I asked him if the Mycophenalate would have a similar effect to the steroids and he said "well it's to reduce inflammation". I asked if it would give me more energy, which the steroids had done and made me fell human again and he said, no they wont help that and they wont make you euphoric - like the steroids have! Cheeky git.
Anyway, all complete lack of knowledge of lupus and the meds aside, I walked away with a prescription for 3 weeks and I am seeing my Knight on 9th August - I phoned this afternoon to check myself. So I am happy for now but I am worried that when my Knight leaves, this man will be looking after me and he appears to have no idea - what if he takes me off the immune suppressant and only relies on bloods???? What am I going to do? Afraid already. I need to get my kNight to write a very thorough handover and treatment plan, at the very least.
Taken 2 tablets so far - 500mg last night and 500mg this morning. Fingers crossed!!!!!
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Wendy39
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Where's he going? You might be able to "follow" him if it isn't too far, it can be done. Though the favoured destination at present seems to be NZ or Oz...
No where so glamorous! Cardiff I believe. Approx 1.5-2 hour drive from my home but it would be worth it and my husband and I have already discussed it. I need to ask him on 9th. I finished work today - notice period worked - so travelling to appts in Cardiff wouldn't be so bad in that respect either. Fingers crossed. Thanks for your reply.
I would put up with the travel - good doctors don't grow on trees! The only problem might be as it is in Wales and not England - the NHS systems are separate but England may be a bit more helpful than Wales are the other way round!
Then it SHOULDN'T be a problem. I know that patients are transferred with a consultant if they move to not too far away. How far is too far is your decision.
The other side of the world is always more glamorous isn't it?!😃 I wouldn't mind the chance to see Cardiff...or anywhere outside of oz for that matter!
Hi Wendy Found your post amusing and scary if you know what I mean. Like the term knight, good idea about the handover letter. so glad you are feeling more energetic. Fingers crossed about the new meds… ml ☺
Meant to say I called him my Knight after my second appt with him, when I took my husband. I have only had 3 appts with him ever. 1st appt in January he just did my biopsy. He listens and is very down to earth and isn't hung up on bloods. He has never ordered any for me! And he gave me hope by saying that he could see I was a 2/10 and he wanted to get me back to an 8 or a 9 / 10, but that I couldn't expect 10/10 with lupus. And if he couldn't do it, he would send me to London for them to sort me out. All sounded great to me. But now he is going. I'll let you know if he agrees for me to follow him. x
That appt Wendy was just too much effort expended on your behalf...shouldn't be like that...well done getting through it and hopefully the DMARD will kick in quickly.
Wow: you've done well despite this lazy man....am so relieved & hopeful for you Wendy...and looking forward to updates re how you do on myco + hydroxy 👍👍👍👍 go for it!
You've got some great replies, so nothing for me to add 🤗
So am just sending you a gentle hug + pat on the back: this was an important appt and you managed it really well despite your knight being away 👏👏👏👏
Great to read your news that you've been put on Mycophenolate. It is a good, well tolerated immunosuppressive, just watch out you may get diorrhea but as your body gets used to it it should settle. It may not happen to you anyway!. It can take up to 3 months to work which is why doctors use steroid injections or tablets to get you thru. Also you are at an increased risk of skin cancer so take extra care and high SPF which I'm sure you do!.
I also agree with the other correspondents that if you can travel I'd stick to your Consultant Knight. He is like gold dust because he'll treat you without bloods evidence!. The one you've just seen is the opposite and you were lucky he was willing to prescribe Myco, bet it was touch and go!. I 've had to travel miles on my diagnostic journey for years to stay with understanding Consultants and it's been so worth not having the stress and worry of whether I'd be treated or not!. Hopefully the treatment working will allow you to do this, fingers crossed!. X
Just picking up your message, yes let us get together for tea/coffee, have not figured how to private message will work on that. Yes saw dermatology and he was hopeless putting it mildly. Room full of folks (not sure who was who ie nurse, student nurse and another chap I have no idea who). I have since gone back to my German GP who makes me laugh and I have on her request written a letter to outline my current problems/concerns for a referral to Rheumatology, not sure if they will be of any help. I then came down with three days of migraines following a 5 day trip with my daughter, don't know if it was travel or tooth problems or both... Thinking of heading to London (may take some time) to have a chat with the Prof. there.
I dared to go into the light today with some friends well covered UV clothes, hat, etc..50 factor, we will see if I react to this, really feel better for it, was feeling a little down yesterday and my lovely daughter hugged me and said to my husband/her dad, be nice to mum as she is low on serotonin being out of the light, how kind she is (17)..ML
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Anger after receiving letter from Rhuematologist
Cortisol causing havoc……… and I don't seem to be able to see my consultant, and my GP won't treat me as she wants me to see the consultant!
I neeed your guys advice !! ❤️ 
Think I have got lucky or unlucky 
