Blood Test Rilozole

[GillB]

The issues with my GP continue.

I make my own appointments for blood tests due to taking Rilozole, as GP is still refusing a Shared Care Protocol.

My friend is nominated to speak on my behalf. She rung up for the results and was told my serum protein levels were abnormal. They made an appointment for another test in two months.

I told my friend I needed another monthly test in March and they asked what it was for. 😡

The nurse asks me every time what bloods we are doing.

My consultant has written to them detailing what tests are required and citing all the reasons Rilozole is safe to prescribe. He has also asked them to prescribe Glycopyrronium Bromide. All is being refused.

Any idea what abnormal serum protein means?

I think it is transaminases and his letter states that is clinically insignificant unless they rise to three times the upper limit of normal. The GP has all the letters.

I have asked the MND Nurse to ring them up.

So frustrated.

[Ellie]

When did you start taking Riluzole? xx

[Doug Carpenter]

GillB - yes, the blood test measures alanine transaminase ALT.

Your consultant is right about x3

Doug

[GillB]

Ellie

3rd November 2021 but only had the first blood test and December.

[GillB]

GillB - yes, the blood test measures alanine transaminase ALT.

Your consultant is right about x3

Doug

Thanks for clarifying Doug Carpenter

[Doug Carpenter]

ALT levels tend to subside over the first few months

Doug

[Ellie]

3rd November 2021 but only had the first blood test and December.

The stated blood testing regimen for Riluzole is:
"Because of the risk of hepatitis, serum transaminases, including ALT, should be measured before and during therapy with riluzole. ALT should be measured every month during the first 3 months of treatment, every 3 months during the remainder of the first year, and periodically thereafter. ALT levels should be measured more frequently in patients who develop elevated ALT levels."

So, you should have had blood tests in December, January and February, however, as your ALT (or perhaps AST) was raised, in theory that sounds reason to have a blood test before May.

As for the ALT tolerance: whilst flags are raised at 3x ULN levels, the stated protocol is: "Riluzole should be discontinued if the ALT levels increase to 5 times the ULN."

None of this lessens the fact that you're dealing with a right jobsworth... 😟😘

[GillB]

None of this lessens the fact that you're dealing with a right jobsworth... 😟😘

Ellie thanks

You are not wrong there. I'm seeing the consultant soon so will see what he can do. He has already written them a few shirty letters.

Guess what that tried to auto correct to 🤣

[shelly21]

GillB my 2nd blood test showed abnormal ALT but last one it went down to well within normal. So like the others stated it can do this and stabilises.

Ellie put my mind at rest when I became worried.

I also sort my own blood test but the g.p was helpful in printing me about 8 blood forms. Maybe you could ask for several blood forms.

Its awful when g.p don't assist. Its all about money sadly.

[GillB]

shelly21

Thanks for the advice. Reading your posts though I think you have had it particularly hard with joined up care. I can't fault anyone else. They have all been brilliant. x

[shelly21]

GillB yes I've not had a smooth journey but my g.p is at least keeping up his end of the bargain.

Ix