Asking up top, so anyone might see this. How do you make ginger tea? I have never used fresh ginger, so it's new territory for me. Tep mentioned ginger beer and candies for nausea, but to the extent we can, we're supposed to limit sweets and soda, because sugar is inflammatory.

Thank you Steph and sarameg. You're the people I remember talking about it, but my memory has been Swiss cheesy lately, because I've been so hyper-focused on everything going on here. I may suggest he take it on Friday nights instead, just based on Tim's nausea experience. Thank Tim and his great hair, for me.

Did his doctor prescribe leucovorin with the methotrexate? It also helps prevent side effects, including the white blood cell count getting wonky.

He didn't, but they draw blood ahead of the Remicade infusions to track his Remicade levels, his inflammation levels, etc., so they can tweak meds and supplements as needed. White blood cells are a key part of what they monitor, so I'll keep that in mind.

Right now, our hope is that he'll only have to take the methotrexate for six months. That is, that's the initial plan, but Crohn's has reminded us plans are just fungible commodities.

Regarding the biotin, I'll ask if it is okay to add it. In addition to the usual pre-Remicade infusion blood tests, yesterday, they also drew blood to check things like his vitamin D and B12 levels. The part of his intestines he had removed is where B12 is absorbed, but some supplements can be inflammatory in the gut, so we're only adding as needed/permitted.

My son has great hair, but he's also already got the high forehead that's a forerunner to a receding hairline, and he's only 19, so I know that will be important to him. Thank you for mentioning it. I knew it could be a side-effect, but it slipped my Swiss cheese, because I was mostly thinking about nausea and mouth sores.

Dr. C (the fellow) was for adding the methotrexate, but didn't seem fully on board and left it up to us whether we'd add it right away, or only add it if he developed Remicade antibodies, but when Dr. V (the attending) came in, he looked right in my eyes, dropped his voice and said, "I STRONGLY RECOMMEND he take the methotrexate." That didn't escape my son's notice and was enough for both of us, even though usually, we're the ones saying, "Do we really need that med too?"

Remicade is the best med for the way his Crohn's manifests, and has worked well for him, except on the parts of his gut which were already too ravaged by the disease, but those were removed during surgery, so we'd like to keep him on it as long as it works. All of this is preventative maintenance right now. He's in surgically-induced remission, so we'd like him to stay there.

Teppy, you mentioned anti-nausea meds. Are these prescription or OTC? (Do any names come to mind?) BTW, we run every med addition by his doctor (including things like Benadryl, Claritin, and the Flintstones Chewable vitamin the inpatient nutritionist recommended post-surgery), so don't worry that we'll go take something just based on a recommendation.

One of the goals aside from keeping the Crohn's at bay is to stay off Mercaptopurine (6-MP) if possible. Remicade increases the risk of lymphoma, particularly in young men my son's age. Methotrexate can increase it a little more, but 6-MP seems more of a risk to his age group, so we'd like the methotrexate to do its job, and then we'd like to be able to eliminate it, too.

Sorry for all the gut talk early in the morning, Buffistas.

Happy Impeachment Hearing Day!

I can ask a nurse today, who I believe is on methotrexate or tried methotrexate. And is also a nurse! She too has RA, so no real thought's specifically for Crohn's, although she is a nurse.

Thanks, Sophia. Good morning.

RA's not the same as Crohn's but all of these auto-immune diseases are cousins. And the meds don't care what you're taking them for when they give you side-effects.

Crohn's has a heredity factor, but no one in our family (out to my son's great-grandparents, aunts, uncles, cousins, or DH and My aunts, uncles, cousins -- and that's a lot of people -- DH is one of 9 kids, his mom was one of 10, his dad was one of 6, my mom was one of 6, my dad was one of 4) has had it. DH has gout (as did his father, and a few others in the family). I think there's some RA on his side. On my side, it's just osteoarthritis.

Congrats, Maria! Relax and enjoy your time off.

As far as ginger tea goes, I use minced ginger in a jar from the Indian grocery store because I am lazy and it is tasty. Just maybe a teaspoon with some lemon and honey. Easy peasy.

So Laura, do I just pour boiling water over it, let it steep for X minutes, then strain it out (or use a tea infuser, which I don't think I have anymore)?

Cindy, methotrexate is one of the drugs they injected into my spine yesterday. (The fluoroscopy went fine, by the way, and they said that all spinal injections from here on out would be done that way, which is a huge relief.)

I will also be getting a high dose of methotrexate intravenously as part of Cycle 2 of my chemo, in a couple of weeks (Cycle 1 lasts 21 days, and day 5 starts this evening.) The hospital pharmacist on my oncology team came by for a consult last night and was so wonderful. He stayed for an hour and a half and went through every drug I'll be taking and when (which are many, and it's complicated) and what to expect from each one. I took three pages of notes. Here's what he said about methotrexate (keeping in mind I'll be receiving a very high dose):

Mainly for this drug, I should expect my blood counts to drop to almost nothing (which is paradoxically good, but means my immune system will be severely compromised (and this is a side effect of several of the drugs I'm taking), hair loss (also a side effect of several of the other drugs), turning my pee bright orange, and mouth sores, which are only a concern because my platelet counts are so low that they don't want me bleeding at all.

I'm going to post this now, because with all the interruptions here it took me 45 minutes to type!

As for anti-nausea, they give me a lot (don't know how many mg) of Zofran, a low dose of Zyprexa (an antipsychotic that is an anti-nausea med at a low dose) and a ton of steroids (which helps kill the blast cells and also helps with nausea, apparently) about a half hour before each chemo infusion. It's a lot, but I welcome it all. ::wide open arms:: If they can inject all of this stuff in me without me getting horribly nauseated, I will be thrilled.

Cindy, to answer your earlier question, I have been to London, Paris, etc. I would probably like to go somewhere more off the beaten path if we do Europe, like Scandinavia or Greece or somewhere else I haven't been to. I am compiling a mighty list from everyone's suggestions, though!

Ginger tea: you can just slice some off and steep it in the boiling water like anything else. Delicious!

In the therapists office waiting room. I typed up a big post of things to say, but lost it!

What Jesse said on the tea. I use an infuser from habit.

It sounds like you have an excellent medical team, amyth.