update on reducing medication

[Main1234]

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.

[Mooka]

Sorry for his disappointment. If he goes on A A he should have calcium as well. Also get any dental work done beforehand as dentists hate it.

[Candy-rojo]

Hi,

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!

[Main1234 in reply to Candy-rojo]

Thank you for your kind message

[Chris-Bromsgrove]

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

[Main1234 in reply to Chris-Bromsgrove]

Hi Chris

Glad all is going well and in the right direction, any changes always seem a bit of a mine field.

I agree re Dexa scan we will be asking about it before any extra medication.

I guess it takes 3 months to notice any reduction changes as they say 3 months to have an effect but I’m just guessing here!

Hope everything continues in the right direction for you .

[Main1234 in reply to Chris-Bromsgrove]

Hi Chris

How is your reduction going ? My OH is also reducing following consultants letter.All ok at the moment .

[Chris-Bromsgrove]

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

[Chris-Bromsgrove in reply to Chris-Bromsgrove]

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

[Main1234 in reply to Chris-Bromsgrove]

That is really good news Chris thank you for update.

My OH received a letter from his consultant saying he could start to reduce his mycophenolate slowly. He now has 2 in the morning and 1 at night.

He had an 18 month course of RTX before his medication.

He has just recovered from flu which did not affect him as much as I thought it would so maybe his immunity is improving.

Fingers crossed you continue to progress with no hiccups.

Best wishes

[Chris-Bromsgrove in reply to Main1234]

My remission inducing drug was Cyclophosphamide, so I certainly wouldn't to go back to that again.

[Main1234 in reply to Chris-Bromsgrove]

My OH had that to start with then AZA had a flare and then RTX and finally mycophenolate