Success- appointment this morning, I went in and he had BNF book on his desk doing his research!! He said that he agrees to bi-daily injections for 2 weeks!!! He wants to see me on day of last injection. He also says that blood results state low vitamin D- 42?? He has prescribed fultium tablets twice a day. Computers were down so I’m going back later for print outs for endoscopy appointment tomorrow(and for me). I’ll upload results to post later today...
Feel so relieved really do !!
Hi,
So pleased to read that you have had success.
Just curious...when he said bi-daily does he mean twice a day or every other day?
If you have neurological symptoms....
there is no time limit specified in BNF on how long every other day loading jabs can continue. It's supposed to be for as long as symptoms continue to improve. If you are still improving after two weeks then every other day jabs should continue.
This info is in BNF book Chapter 9 Section 1.2
BNF
bnf.nice.org.uk/drug/hydrox...
BSH Cobalamin and Folate Guidelines
b-s-h.org.uk/guidelines/gui...
Thank you ... yes it’s every other day. I’m hoping that after the 2 weeks he will continue but who knows. I just hope i start to see improvement. I know it’s not a quick fix though. X
You do realise SMXX that you have helped the next patient along by your perseverance.
Well done!
Thank you ... ☺️ x
Good. Raising my vit D from 21 to 73 helped me especially when it went uo from 51 where it was stuck for months. Sounds like Gp on side.
This is also good to know, I've just had a Vit D injection as I can't tolerate the tablets, I'm hoping it will work for me too 😊
So do I. Let's hope so.
I think you will recieve 3 injections a week every other day for 2 weeks. Good doctor wants to see you to monitor improvements probably to decide whether to carry on or a different regime. If you are having neurological symptoms try and carry on . I had a 6 week gap which was intended by doctor to be 3 Months. A mistake. He stopped everyvother day as I was feeling worse and he thoight me having a bad reaction. but that then changed to getting benefits. I'm very pleased for you.
Hi, yes I’m all booked in Monday, Wednesday& Friday for the next couple of weeks then appointment with him on the Monday when done.
I will try to get him to carry on as having rough time at the minute and Endoscopy is tomorrow and dreading it !!
So, are you still on 3x week??
Thank you 😊 x
No I'm on every 2 weeks at present. Hope endoscopy goes okay. The sedation will make you forget most of it I hope. When I took someone all they remembered were being told to swallow. Needed a throat lozenges after.
Well... I’m not gonna lie ... that was bloody horrendous!! No sedation (got talked out of it) if I ever had to have that again its sedation or it ain’t happening!! I’m no softy but that was naughty !!! X
I've had two endoscopy, no sedation - not pleasant but I coped, had OH stroking feet to focus elsewhere. Try not to do what I did, and laugh with relief when camera on it's way out, doesn't help 
Thing I most remember afterwards, is burping my way out of the hospital, and farting my way across the car park.......
Ha,ha ... that made me chuckle!! Not a chance I’m having that done again without sedation!! Bloody awful !! Anyway, biopsies taken and I’ve a bloody hernia!! Just something else to the list eh !! 🙄 x
couldn't make it up, could you? Glad I made you smile anyway 
Hope it's all worth it, and you get some answers
Oh does anyone know how I change my picture on here ?? Tried to change it last night and it’s just all black ?? X
On the road to recovery, finally!
Downton Abbey - Christmas Finale
Finally things are moving forward...
Finally somebody that listens AND understands !!!
Finally the Doctors and Haematologist are listening
