Methotrexate

[kushami]

Update: I am going to be without MTX for possibly three weeks due to my poor estimation of when to order, forgetting about Easter public holidays, and a possible confiscation of my parcel at Customs.

I am wondering whether the use this as an opportunity to have another stab at getting testing in Melbourne. Ideally I would like to have a transcranial Doppler and a SPECT scan. Both can be done at the Austin, perhaps even on the same day. Will see what new GP says.

Regardless, it will be an opportunity to see whether I regress without it.

 

[alyteetee]

Update for anyone who cares: the methotrexate arrived just fine. the package came with a letter that said it was opened at the border for inspection but no illegal contents were found. noting i only ordered 30 tabs.

 

[kushami]

@alyteetee, I'm glad it arrived safely.

Don't forget your folic acid (or variation thereof) and good luck!

 

[kushami]

Neither of my parcels have arrived. A friend has offered to have me send it under his name to his address, so it looks like I'll have to do that.

It has been quite stressful to start MTX, have it working (as far as I could tell at ten weeks or so), then not to be able to get it again. I just wish someone here would try me on it. I might ask the GP; she can only say no.

 

[kushami]

The second parcel (resend) unexpectedly turned up after showing "held at Customs" for a month! I have already ordered more, but that is fine, I will store it in the fridge and am happy to have a long-term supply secured – I think enough for 18 months.

Very relieved. Can collect parcel on Monday and will restart weekly dose of a Monday. Will start with small dose again as quite a bit of time has passed.

 

[kushami]

I had horrible trouble with side effects from folic acid for my first go with MTX, so I was dreading taking it this time. Oddly, I have had almost no side effects this time – touch wood.

What happened in the intervening two months? I don't know, but I'm now able to tolerate 2.5mg on two days spread through the week (separated from each other and MTX day), which gives me the suggested 5mg per week supplementation.

 

[cfs since 1998]

Are you sure the side effects were from folic acid?

If so, might want to look into folinic acid instead. There is a prescription strength form, which is actually used to offset methotrexate toxicity.

There was even a folinic acid trial in CFS which showed improvements (no placebo control though).

 

[kushami]

Are you sure the side effects were from folic acid?

If so, might want to look into folinic acid instead. There is a prescription strength form, which is actually used to offset methotrexate toxicity.

There was even a folinic acid trial in CFS which showed improvements (no placebo control though).

Yes, we double blinded it for two weeks. It was very, very obvious when I was taking it to when I wasn't.

I looked into it extensively, and all the various forms, even injections, are known to cause flatulence (nobody knows how the injections contrive to cause flatulence), so changing form or administration route was not going to help me, and anyway the expense and availability were a problem.

I was worried at one point that I would have to abandon MTX. If you've never experienced "extreme flatulence", you would be surprised at how disruptive it is.

Thank goodness it has settled down to a manageable level. Being a human whoopee cushion was not much fun – I couldn't sleep.