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12-30-2015, 12:37 PM   #91
DanaBanana
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DanaBanana: I didn't do well at all on the pills. I took them for 3 years when I was in high school, and ended up almost entirely homebound because they made me so sick. The injections have definitely been more bearable for me as far as side effects. Why did your doc switch you to pills? I'd rather take pills than deal with another needle, but it just isn't worth the added side effects for me. Good luck with the acupuncture!
He switched me to pill form to see if it would help resolve the constant fevers I've been having. It hasn't. I feel sicker. :-(
12-30-2015, 05:01 PM   #92
duh panda
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duh panda: I'm a bit late - I haven't kept up with the forum lately - but for the past 4-6 weeks, I've been having awful migraines 3-4 times a week, which isn't typical for me. I've had migraines sporadically throughout my life, but only maybe one every couple of months until now. It hadn't occurred to me that it might be MTX-associated. Have you heard anything from your docs about it?
Nothing from docs about it. Folic acid supplements do seem to help - timing them right before and for the 2 days after injections have been keeping headaches from hitting full blown debilitating migraine status. I did have to request the supplement. The GI currently overseeing my care is hands off and just continuing treatment from a GI I had for 8 years before moving states - the current one doesn't fight me on what I want, but also hasn't been helpful or forthcoming on her professional opinion for anything. I have a consult appointment with a new GI on the 5th of Jan. and one of my questions for them is their opinion on if it's worth it to keep trying to manage it as a side-effect or try switching to a different immune suppressing combo med. with the Remicade. Would love to ditch the injections and (hopefully) headaches/ migraines but we will see what's said in the next week if anything.
12-30-2015, 06:57 PM   #93
DanaBanana
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Nothing from docs about it. Folic acid supplements do seem to help - timing them right before and for the 2 days after injections have been keeping headaches from hitting full blown debilitating migraine status. I did have to request the supplement. The GI currently overseeing my care is hands off and just continuing treatment from a GI I had for 8 years before moving states - the current one doesn't fight me on what I want, but also hasn't been helpful or forthcoming on her professional opinion for anything. I have a consult appointment with a new GI on the 5th of Jan. and one of my questions for them is their opinion on if it's worth it to keep trying to manage it as a side-effect or try switching to a different immune suppressing combo med. with the Remicade. Would love to ditch the injections and (hopefully) headaches/ migraines but we will see what's said in the next week if anything.
Having a proactive Dr goes a long way....I hope the consult with a new Dr goes awesome.
Treatment is so full of weighing the pros and the cons. It sucks. I'm thankful my gi is most concerned with my quality of life. That's the kind of Dr we need.
It's still early for me, as I'm only going into week 8 of MTX and I'm still not feeling any benefits and if anything, the pill form has made me feel worse. On top of this I'm in a full blow RA flare so I'm feeling extra miserable. Such a long road...remission is the goal and I habe faith it will come but right now it feels so far away.
Keep us posted on the new Dr and how that goes. :-)
12-30-2015, 10:00 PM   #94
duh panda
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Thanks DanaBanana

Hope your body starts coping better with the pill form and the RA responds and settles down! Here's to hoping 2016 is the year great things will happen I've got a good feeling about it. I figure even if remission stays out of reach there is no reason the steps working in that direction can't be just as satisfying.
12-31-2015, 03:18 PM   #95
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hang on Dana Banana, hopefully the methotrexate will kick in soon. I'd encourage you to return to the injections (better for IBD patients). what dosage are you on?
Are you on prednisone right now to calm down the RA flare and gain some time for the mtx to kick in?
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01-01-2016, 02:13 PM   #96
DanaBanana
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hang on Dana Banana, hopefully the methotrexate will kick in soon. I'd encourage you to return to the injections (better for IBD patients). what dosage are you on?
Are you on prednisone right now to calm down the RA flare and gain some time for the mtx to kick in?
Thank you! I'm on 20mg MTX. Yesterday was my last dose of predinsone after 8weeks of it. Started at 40mg, dropping 5mg every 7 days. I don't feel like it helped at all but in light of the RA flare, maybe it had been. All I know is I feel like garbage between the crohns flare and now the RA flare. Sucks. Today is the worst because it was MTX last night, so today I feel run over. I see my gp Monday...He's not apt to do anything regarding the MTX as he prefers to leave that up to my gi Dr, whom I'm seeing January 16. However, I can discuss what to do to manage the RA flare. When I see the GI dr, I'll suggest going back to injections.
I did receive some good news yesterday. I got approved for long term disability through my employment. So that's a huge relief. A Christmas miracle and a wonderful way to begin 2016.
Also, we had Christmas dinner last night and I managed to eat some yams,steamed carrots, and shrimp. Not much but, more than anything solid in many months. I wanted more cuz it tasted amazing, but happy I stuck with a little because I still needed to take a buscopan later and visit the loo a few extra times.
01-28-2016, 11:23 AM   #97
mish2575
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also regarding Folic acid, which should always be taken during treatment with methotrexate, there are different dosing protocols. my specialized IBD pharmacist clearly mentionned not to take Folic acid the day BEFORE and the DAY of methotrexate. It should be taken depending on dosing prescribed, the day after or remaining days of the week, if on a low dose continuous daily schedule.
I was prescribed Folic acid to go with it. No one ever mentioned not taking it the day before or of. Do you know why?
01-28-2016, 11:30 AM   #98
DanaBanana
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I was told to take it every day except the day I take the mentho. I've heard some take 7mg once a week
It really varies on the Dr, so it seems. No matter which way you are counselled to take it, make sure you take it. Methotrexate prevents us from making folate that we need, so taking the sup is important and it also helps ease the side effects.
01-28-2016, 12:27 PM   #99
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@TonyH...Hope things are improving for you....I'm feeling much better with the Methotrexate at Week#3 & Week#4. Things appear to be settling down again. After Week #2 - I really wanted to stop the Methotrexate.. I am trying to continue the Methotrexate with the Remicade as Combo Therapy, at least, at the current time.
why did you want to give up weeks 1 & 2?

I'm starting this weekend. . .
01-28-2016, 12:43 PM   #100
mish2575
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So then i would suggest taking it every day, why stop? You cannot overdose on Folic Acid, your body doesn't absorb more than it needs.

Reading this thread has scared the bajeezus out of me! I'm going to start this weekend. I'll do it Friday night i think so that i'll hopefully be over the major side effects (should i get them) by Monday.

I see lots of people complaining about side effects that seem like they would be relieved by MMJ. I take MMJ every day. Does anyone know if it will help with nausea and / or headaches?
01-28-2016, 03:48 PM   #101
Jay Woodman
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why did you want to give up weeks 1 & 2?

I'm starting this weekend. . .
@Mish. I was so nauseous when I started but I persevered & continued with the Methotrexate. The nausea subsided as my body adjusted to the medication. Perhaps the first few weeks were the most challenging. I'm currently still on my once weekly dose in combo with Remicade every 8 weeks. Perhaps, I can recommend patience 😊 Things settled down for me.
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01-28-2016, 04:00 PM   #102
mish2575
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Thank you.

Were you taking folic acid at the time? I keep seeing posts that it helps with nausea.
01-28-2016, 05:29 PM   #103
Jay Woodman
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Thank you.

Were you taking folic acid at the time? I keep seeing posts that it helps with nausea.
@Mish yes Folic Acid has been part of my daily routine since I started the medication regimen. The only day I don't take Folic Acid is the Methotrexate day.
01-28-2016, 06:24 PM   #104
DanaBanana
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So then i would suggest taking it every day, why stop? You cannot overdose on Folic Acid, your body doesn't absorb more than it needs.

Reading this thread has scared the bajeezus out of me! I'm going to start this weekend. I'll do it Friday night i think so that i'll hopefully be over the major side effects (should i get them) by Monday.

I see lots of people complaining about side effects that seem like they would be relieved by MMJ. I take MMJ every day. Does anyone know if it will help with nausea and / or headaches?
In easy read; omitting the folic acid dose on the day you take your metho is to prevent the methotrexate from being less effective. Taking the folic acid the rest of the week helps ease side effects such as gastro issues and prevent liver toxicity.

In my experience it has helped. I skip the folic acid on Thursday's, as I take my mentho injection that evening and resume my folic acid intake the next day, continuing to Wednesdays.
01-28-2016, 06:28 PM   #105
DanaBanana
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Also, I switched back to the 25mg injections of methotrexate as the pill form made me terribly nauseated and my abdomen hurt for days. I don't experience nausea on the injection.
And an update, after seeing my gi specialist, I began Humira today in combination with the mtx. Hoping this combo does what everything else has failed to do.
01-29-2016, 09:19 AM   #106
mish2575
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Hows your hair been Dana? We seem to have the same hair type / length.
I take my folic acid each nite. I was going to take my injection tonight so the worst of the side effects would hopefully be gone by monday. So i'll skip tonights Folic acid.

Are we not allowed to mention MMJ in this group? I'm very surprised no one has mentioned it for nausea or stomach pain.
01-29-2016, 09:28 AM   #107
mish2575
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I am so nervous to start this! I actually tear up thinking about it and I've been through a lot of drugs over the past 20 years. I think the packaging with a big orange "CHEMOTHERAPY DRUG" kind of freaked me out.

When do most people start to experience the side effects? When should i expect the nausea to hit, if it is going to? Will my hair start thinning right away? I think i may buy the shampoo mentioned in a previous post - it was only $40 for the shampoo & conditioner on amazon.
01-29-2016, 01:10 PM   #108
DanaBanana
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Hi Mish. I haven't had any bad hair issues...I feel like my hair is better because of the folic acid. If anything, I'm just too tired to do much with my hair lol

The side effects are quite individual so I can only share on my experience. I rarely get nausea from the mtx Injections. The pill form definitely did give me bad nausea. I inject in the evening to minimize some side effects. But I do experience what's referred to as a "Methotrexate Hangover" the next day. Basically I feel achy, tired....fluish, really. Sometimes my bathroom frequency increases. I find drinking lots of water helps though..and lots of rest. Sipping gingerale. Tylenol takes a bit of the edge off, though I do have prescription pain killers for my RA pain if I need it. I run fevers as well and honestly, that's the most annoying part for me because the fever just makes me feel even crappier. But I run a fever every day so it's not just a post injection thing.
I know the whole "chemotherapy" part is scary but keep in mind our dosage is a low dose being no where near as high as is given for cancer treatment. Took me a few months to get past that feeling though.
If you do experience nausea, ask for an anti-nauseant. I take Maxeran when needed. Or use your MMJ if you find that helps. I can't do it because I develop paranoia most times and trip out lol
01-29-2016, 04:26 PM   #109
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Thank you, your post made me feel better. I'll keep tyelonol at my bedside for when i wake up to stop the fluish feeling as soon as i can. I do take a lomotil at night so hopefully that will stave off the diarrhea.
01-30-2016, 06:28 AM   #110
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Woke up fine. Feeling like I usually do
01-31-2016, 06:34 PM   #111
DanaBanana
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Woke up fine. Feeling like I usually do
How are you doing today?
02-12-2016, 07:33 PM   #112
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I'm glad I read this thread before I start giving myself the injection at home without the watchful eye of the nurses. I'm on week 3 of it now. Feel totally whacked tired. xx


02-12-2016, 08:23 PM   #113
DanaBanana
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I'm glad I read this thread before I start giving myself the injection at home without the watchful eye of the nurses. I'm on week 3 of it now. Feel totally whacked tired. xx
Hugs. Feel ya!
03-29-2016, 11:32 AM   #114
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I had to stop. my exhaustion was so bad i ended up in the hospital and all tests came back negative.

I was so exhausted that bending over to pick up a sock left me out of breath. And that was the day i was supposed to take the injection.

It was working on my fistulas but the debilitating exhaustion was nothing i could live with. I am not a complainer by nature and i tend to work through my exhaustion that i've had in the past with this DD and its medications but this was on a whole new level.

I have my appointment today. I"m going to ask 1) if we try a new drug to go on a half dose for a while first. 2) a consult with a fistula specialist. I go to a very large city so i'm sure they have specialists.
03-29-2016, 11:33 AM   #115
mish2575
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I'm glad I read this thread before I start giving myself the injection at home without the watchful eye of the nurses. I'm on week 3 of it now. Feel totally whacked tired. xx
How about now? my exhaustion got too much to handle after only 1 month.
04-02-2016, 09:08 PM   #116
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Not sure when I last updated but here's what's been going on with me and MTX:

-I was on 15mg of MTX via injection, had nausea that got worse as time went on
-After about 6 months I got pulled off it due to high liver enzyme levels (ALT:150)
-Was off MTX for a month with increasingly bad symptoms. Asked to go back on due to symptoms and switch to the oral version in an attempt to resolve nausea
-My doctor agreed but at a lower dose (10mg)
-Been on 10mg for 2 months now, symptoms are better than they were off it but not quite as good as the 15mg (though I have never felt as well as I did on Imuran, even on the higher dose of MTX) Nausea has lessened greatly though I am now having day after MTX fatigue which is frustrating.

-Currently: my doc is still not happy with my level of symptom control and wishes me to switch biologics (currently on Remicade, he wants Stelara).
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