has anyone had experience of this drug that breaks the blood / brain barrier and goes throughout the nervous system? 

  • As you wait for reply’s you can put Methotrexate into the search Mag tool near the top and see the older posts and reply to see if the folks are still active on the site 

    Mike - Thehighlander

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  • HI Debbie, yes I had a type of lymphoma (double-hit) that has a tendency to get into the central nervous system, so I was given methotrexate as a prophylaxis. I had 2 different types - 3 cycles of it being injected into the spine (intrathecal) and 2 cycles of high dose methotrexate intravenously.

    The intrathecals were straight forward, and only took about 30 minutes. They took a sample of my spinal fluid at the same time to test for lymphoma cells in it (thankfully negative). The only significant side effect was a few days of bad headaches after the first one - I was told to drink coffee to help with these.

    The high dose IV ones were harder as they required staying on the ward until the methotrexate cleared my system (which took 4/5 days). They had to keep me very hydrated and my blood PH at the right level, so I was given a lot of fluid and was weeing every 30 minutes.  I didn't have any significant side effects, but my bloods showed a bit of jaundice (it wasn't visible to look at me), the doc said this is normal as the methotrexate can "tickle the liver". 

  • Thank you for responding and love your dog! Hope all is well with you now ? 

  • Yep, the last PET scan shows complete remission and my energy levels are on the up, so I'm starting to get my old life back again. The treatments did their job Slight smile

  • I’m so pleased. Enjoy your life ! 

  • Hi Debbie

    It's a year since I had my high dose methotrexate infusion.  I tolerated the drug very well, lots of fluids to protect kidneys and weeing lots!  I had a pic line witch made it easy.  I was well so my biggest problem was tollerating being in hospital and not out and about, I had 6 nights in total.  Prepare to be bored!  Best of luck, hope it goes well.


  • Thank you Irene for the feedback much appreciated. Hope all continues to go well for you. 

  • Thanks Mike that’s a brilliant idea. You are amazing xx 

  • Hello Debbie

    Like Aeolai I had 2 different types of methotrexate.
    3 cycles of it being injected into the spine (intrathecal) and 2 cycles of high dose methotrexate intravenously.

    For high dose methotrexate. I had to stay in the ward which was roughly 5-6 days per go. I was given methotrexate for a 24 hour period then the rest of the time was on a IV drip flushing it out. I was put in a private room, but depending how busy it is you might be in a shared ward. Most of the time there you'll be bored, peeing a lot, eating NHS food and giving a few blood tests.

    The intrathecal I wasn't a fan of because spine + needle, but I just got on with it. Done by professionals anyway.
    Like wise takes about 30-45 minutes. They recommend laying down for a bit after. Just drink water and coffee to prevent a headache afterwards.