OH went to see consultant and reducing medication ( MMF) was discussed as we thought. He was initially diagnosed 7 years ago.
before deciding reduction of medication bloods ( not sure what they will be testing) to be taken and a review appointment again in 6 months so no decisions until then.
routine bloods now every 3 months.
Consultant did mention she would like him in andronic acid .. he said he would like a bone density scan before deciding which I personally think is the way forward. He takes vitamin D daily, keeps fit and generally does ok.
Guess rather an anticlimax we will see what happens in 6 months.
Written by
Main1234
To view profiles and participate in discussions please or .
Sorry about the anticlimax but look, how great is it that he’s generally fit? It’s what we all want to be.
Zoledronic acid infusions are fine. I’m due to have one yearly. I worked in the cancer area of the hospital and once every 6 months or so we’d have our former Chemo patients in for their Zoledronic Acid infusion. It was almost like a spa treatment day for them: they were the survivors and this was helping their bones. It’s definitely something to be celebrated. He’s clearly doing really well and I hope you’ll see in 6 months how far he’s come!
Hi Main1234. I've only just seen your post as my notifications have suddenly started going into spam. It's good that your OH is still being considered for MMF reduction and hopefully the bloods will be fine. My consultant cut my MMF dose to 250 mg twice a day (from 500 mg) without waiting for latest blood results. That was six weeks ago and so far so good. My next bloods are due in December, so fingers crossed. Usually you are given a Dexa scan before starting you on AA. Seems daft to take AA if it's not needed. Chris
Hi Main1234. Yes, likewise. It's all going okay at the moment. I'm due for a three month follow-up appointment in December so fingers crossed that the blood results will all be okay. Glad that all is well with your OH. Chris
Hi Main. I hope your OH is still doing okay. Just by way of an update. It's been three months now on reduced Mycophenolate dosage. I saw my consultant last week. Physically I'm okay, no noticeable changes and my latest bloods are all okay. A slight increase in white cell count (namely Lymphocytes) which is to be expected. I don't know if there has been any change to the ANCA reading as it never appears on the system. Anyway the upshot of it is that I am now off Mycophenolate completely. It feels rather weird no longer taking any medication after do so for the last 12 years. So it's now fingers crossed that I remain in remission. If not, plan B will be Rituximab. Chris
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
GPs Practices - Return to Normal? not convinced!
Update
Nerve pain with MPA
Update Of Today 
