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Plan moving forward. Will it work?

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Ulcerative Colitis
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Posted 10/11/2013 12:30 AM (GMT 0)
So finally after hospital stay I had my appointment with my new superstar GI. It went well and lasted a good 30 to 40 minutes. So here is the plan. No more asacol since obviously it does nothing. I will start tapering Pred 5mg every 5 days. Been on it way too long. So I am starting Humira as soon as my kit arrives. I believe I start with 4 injections the first week followed by 2 the next week and then 1 every other week after that. Here is where it gets interesting I think(at least t my limited knowledge). I will also be doing methotrexate injections weekly. The reason is to boost the effectiveness of the Humira. I also will be taking Zofran for nausea as well as folic acid. Interestingly enough she said my colonscopy results look more like Chrons than UC because of the claw like ulcerations. I had a ct scan though and only my colon is damaged. I will be testing my liver often as well. Any thoughts on this plan? Anyone taking Humira and methotrexate at the same time?
Posted 10/11/2013 1:04 AM (GMT 0)
i know someone on remicade and methotrexate but he has crohn's. he is pretty up and down and has to use prednisone even though he takes both of these religiously.

i hope it helps you. my doctor has mentioned trying methotrexate. sucks you have to take so many injections, but if it helps, then i'm sure you will get used to it.
Posted 10/11/2013 2:08 AM (GMT 0)
scum I almost wonder if we see the same GI...

I did methotrexate by itself at first and later to boost Remicade. It didn't work for me but I can at least report that I didn't have any side effects. The needle is tiny and no big deal (can't say the same for Humira).

Is the Zofran for nausea you're already experiencing or in anticipation of nausea from methotrexate? For what it's worth, I never had nausea, so you might not need the Zofran.

Do you know why your GI chose to use mtx instead of 6MP to work synergistically with the Humira?
Posted 10/11/2013 2:17 AM (GMT 0)
I think she went with methotrexate instead of 6mp because of my past liver issues with imuran. Yes maybe I won't need the Zofran. We will have to see. I work Sat through Tuesday so we shall see when I start it all Tuesday night. Just glad to have a plan. My former GI was Imuran or surgery pretty much as my only options so I am glad to have something to try. Hopefully if it all works I'll discontinue methotrexate later.
Posted 10/11/2013 11:14 AM (GMT 0)
I have MTX here, but I haven't taken it yet. If I lose Imuran, that's my next step. I have 1" 25 g needles. They're kinda big :-/

You may fail at coming off of Prednisone until your support meds are really working. It took me 14 months to get off of oral steroids. If the taper is too much , talk to your doctor.
Posted 10/11/2013 11:14 AM (GMT 0)
Glad there is a 'new' plan in place. Hope you get some relief soon Scum1.
Keep us posted!
Posted 10/11/2013 2:31 PM (GMT 0)
I hope it works...it would be good to get you off the pred.

q
Posted 10/11/2013 3:36 PM (GMT 0)
Good luck scum1!  I'm glad you got a new GI doc and hopefully this will be the magic combo.

B

Posted 10/11/2013 3:47 PM (GMT 0)
I'm going to wait till Tuesday to start the methotrexate since I have to work this weekend until then and don't want to take a chance on it making me feel bad. Need to earn some money to pay for all these meds.
Posted 10/25/2013 6:38 PM (GMT 0)
Did my second dose of Methotrexate yesterday. Went well again with no nausea. I am so tired today though. It really seems the next day after a shot I am wiped out. Humira 2nd dose next week then I will be done loading. Down to 25 mg on Pred. Seeing a little blood in the am but otherwise 2 or 3 trips to the bathroom with a loose/firm mix is ok I think since Humira is not kicking in yet. Really stressed at the moment also since my wife is leaving for sure. It's been years coming and she is taking care of me and will also later if I end up doing surgery in the future. She is still in the house until we get everything lined out financially but in the next few months I will be single again after 24 yrs.
Posted 10/25/2013 6:50 PM (GMT 0)
You're really in an emotionally tough situation regarding your wife, but it's good she's being supportive to your care.

Do you have other supports through friends and family as well?

Will your kids be staying with you or with her?

I have two friends who take methotrexate, but in pill form. They both report fatigue the next day or so after taking it.

I hope the Humira kicks in soon....how long will you be giving it before making decisions regarding surgery?

q
Posted 10/26/2013 12:16 AM (GMT 0)

quincy said...
You're really in an emotionally tough situation regarding your wife, but it's good she's being supportive to your care.

We are doing this as best and as friendly as we can. We had 24 yrs of a pretty successful marriage but its run its course.

Do you have other supports through friends and family as well?

Honestly I have 2 brothers and my parents. I'm really not that close though. Not sure why but I really go it on my own mostly. They are there if needed but I'd choose my future x to take care of me.

Will your kids be staying with you or with her?

I have a 19 yr old and a 15 yr old here at my house. It's gonna be a joint custody on the 15 yr old she will most likely stay here in the house with me but the wife will be moving close by so it is really up to my daughter as to where she stays

I have two friends who take methotrexate, but in pill form. They both report fatigue the next day or so after taking it.

I hope the Humira kicks in soon....how long will you be giving it before making decisions regarding surgery?

q

As for surgery it depends. I'm running out of medicine options. Have to wait and see. I need my health back if I'm going to get on with my life. I might try a few other things if the Humira does not work but multiple hospital stays and prednisone are just not going to allow me to get my life back on track. I'm going to want to find someone new. A sick man with a head like a basketball is not going to attract a lot of women.
On the plus side I can go full sleeve with my tattoo :)
Posted 10/26/2013 5:46 PM (GMT 0)
Looking forward to the further tattoo pics!
Yeah, basketball heads aren't that flattering, but the tattoo might be a good deterrent?

Only you know what's best for your life, and if the meds aren't cutting it, then surgery seems a good option to consider. You already will have someone to help care during your recovery...which is a huge thing.

q
Posted 10/27/2013 6:08 PM (GMT 0)
Hah im in the same situation kinda. My gf just left me and it stressed me into a little flare. Im on the highest dose of remicade/6mp and doing enemas 1-2 times a day. Im not bad right now but my heart is broken and im stressed. Started smoking again, it helps with the stress. Btw i'm a tattoo artist nearly covered with tattoos lol. At the end of the day I have family and they got my back. My kids mom is still around every day and we been split for 2 years. Pma man keep your head up bud. I'll do the same.
Posted 10/27/2013 6:14 PM (GMT 0)
Cadillac lover--just curious...does smoking help your uc?
Posted 10/27/2013 6:23 PM (GMT 0)
^^ if anything it helps with stress which in turn calms my gut. I quit smoking when i'm not flaring though.
Posted 10/28/2013 12:49 AM (GMT 0)
Well my family may have my back but not always not a good way. I'm just not that close to them. Tattoos always help me deal with the pain and stress and I got the pain and stress in spades at the moment. I like that your kids mom is still around. I think mine will be also. Now if this Humira will just start working and I can get off this pred!

Cadillac Lover said...
Hah im in the same situation kinda. My gf just left me and it stressed me into a little flare. Im on the highest dose of remicade/6mp and doing enemas 1-2 times a day. Im not bad right now but my heart is broken and im stressed. Started smoking again, it helps with the stress. Btw i'm a tattoo artist nearly covered with tattoos lol. At the end of the day I have family and they got my back. My kids mom is still around every day and we been split for 2 years. Pma man keep your head up bud. I'll do the same.

Posted 10/31/2013 4:00 PM (GMT 0)
did my last 2 loading doses of Humira this morning followed by a shot of methotrexate. Also dropped to 20 mg Pred yesterday. The Pred drop is not going so well with more trips to the bathroom. Hoping the Humira kicks in some in the next couple of days because I have to get off of this Pred
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