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Crohn's Disease Forum » Treatment » Methotrexate » Methotrexate Support Group


 
03-17-2015, 01:28 PM   #61
Grumpy1
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K_dubs my hair is also still falling out from mtx. I have been using a shampoo called Nioxin which I used when I had an issue with hair loss years ago when I got sick and it seems to slow the loss a bit, and I also got my hair cut shorter.

I can honestly say that the mtx has helped me so I guess if worse comes to worse I'll just buy a wig and get on with it because the way it was before prior to mtx and after 16 months on prednisone and 50 lbs of weight gain I'm all for anything that doesn't include pred or being in the hospital again. Not sure that the Humira is working for me but I'll keep my fingers crossed and hope for the best. Good luck and keep your chin up it will get better.
03-18-2015, 07:40 AM   #62
k_dubs25
 
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Robrich, so the mtx injections don't have to be refrigerated? I figured since Humira was that would be too.

Grumpy, I hope that the Humira kicks in for you soon! It worked wonders for me for about a year and a half. Hopefully this hair loss will stop for both of us soon as well!
03-18-2015, 11:51 AM   #63
Robrich
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That is correct no refridgeration for MTX injectable. Store at room temp.
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DX. Crohns 50 yrs. with fistulas for 20 years until remicade
Meds: MTX,ENTYVIO 9/14' augmentin,
pred. 10mg.
probiotics
d3, calcium, k2' magnesium, resveratrol,
Turmeric,paleo, bone broths
Past: humira no response after 6 mos., remicade amazing for 10 years then stopped working.
Entocort
6mp, Imuran never helped nasty side effects liver problems, caught pneumonia
Asacol, rowasa no response
Flagyl worked well but got PN cipro same.
03-18-2015, 12:33 PM   #64
k_dubs25
 
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Interesting, I'll definitely have to ask my GI about it when I go in a few weeks. If it means not having to deal with the hair loss as much, I think I can suck it up and do the injections. Thank you!
06-16-2015, 01:07 PM   #65
Pixie100
 
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Hi everyone.

I have been on Remicade for almost 9 years with great success until recently, at which time Methotrexate was added to my cocktail. I have tried Methotrexate on its own on previously, but found the side effects overwhelming.

Currently I'm experiencing headaches. My GI slightly reduced my dose and is hopeful I will be able to slowly increase to the prescribed dose. In addition, the folic acid has been increased. I'm scheduled to take my third dose on Thursday.

I would very much like to return to work in management on an exciting albeit stressful project ASAP. Does anyone have success with adjusting to methotrexate over time? (The headaches make me a little less patient and I'm concerned about the impact of that on my relationships with others).
06-16-2015, 01:13 PM   #66
Pixie100
 
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Hi there!

I'm wondering if anyone has had success in adjusting to methotrexate over time. My third dose is due Thursday and I'm experiencing headaches that make me a little less patient than normal--I would like to return to work ASAP and am concerned about the effect of the headaches on my relationships with my team.

On a positive note, a reloading dose of remicade and the addition of methotrexate have substantially reduced my abdominal pain and pregnancy-like distention.
06-16-2015, 01:14 PM   #67
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Sorry for the double-post
06-16-2015, 01:38 PM   #68
Grumpy1
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Pixie100, I take a drug for migraines that keep the headaches down to a dull roar and when I mentioned that my migraines were breaking through after I started the MTX they increased the dosage for my migraine med. I found that the headaches did lessen after about 3 months and I have been able to drop my migraine med dosage back to the original dose.

The benefit of MTX outweighed the side effects in my particular case. And I also just told my co-workers that I was on this new drug and that this was a side effect and to please just excuse me if I was snappy - they were really good and would just say "okay, are you alright, cause you're a little grumpy right now" and we would all laugh. They have been amazing through this rollercoaster ride of drugs and side effects.
06-16-2015, 01:44 PM   #69
duh panda
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Hey Pixie it took about 6-8 weeks for me to feel adjusted to my MTX injections. We were discussing the possibility of adjusting to a lower dose and building it up at the month mark due to side effects but they leveled off before any changes needed to be made.

Pretty predictable now - slight increase in pain in the day or so leading up to MTX injection and wake up with a headache the morning of the injection each week but it's usually gone by lunch time (I take my shot first thing after waking up), a bit of excess fatigue day after but the nausea/ constant debilitating headaches/ major exhaustion all leveled off after a month or so.
06-16-2015, 06:08 PM   #70
Lady Organic
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interesting idea about hair loss : aromatherapy
the fallowing dermatology study is about alopecia, but this could maybe help some of us too:
http://archderm.jamanetwork.com/arti...ticleid=189618
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''UC-like Crohn's'' since 2001:
on: 25mg 6-MP (purinethol)+ B12 shots
minor hands/wrists chronic arthritis since 01/2013

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suppl Curcuminoid extract, Inulin,psyllium, apple pectin, Vitamin D

past meds:
pred 50mg, 5-ASA, cortifoam, Imuran (failed) Purinethol (success) methotrexate (failed CD and arthritis).
06-23-2015, 01:58 PM   #71
Pixie100
 
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Grumpy1 and Duh Panda,thanks so much for your response to my inquiry regarding time to adjust to Methotrexate. It's encouraging to hear that a successful transition can be made. Last Thursday, I took the prescribed dose and have had a rough week. And like you, Duh Panda, my pain returns prior to the next dose. I find it so helpful to speak with others with experience--it can be awfully lonely out here!

Thanks again.
07-06-2015, 10:49 PM   #72
astarks
 
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Has anyone else had issues with feeling feverish after an MTX injection? I took MTX orally several years ago, but had to switch meds due to the awful side effects. Now my rheumy has decided that it would be worth trying the injectable form to avoid some of the GI side effects, which has worked fairly well, but usually for 48-72 hours after my injection I feel feverish - chills, achy muscles, sensitive skin, etc.

I have a similar reaction for a day or two after my Remicade infusion, but because that's only every 6 weeks, it doesn't really interfere with my life as much. I'd like to stay on the MTX, because it does help with my SpA, but these side effects are killer! I don't really want to have to go through the process of trying to find other meds that work - again - but it's hard to justify being ill three days out of every week, so I'd appreciate any advice on mitigating side effects!
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Dx: Crohn's Disease, SpA, May 2004 (age 11); POTS, 2012 (Age 19)
Currently taking: Remicade (Crohn's); MTX (SpA); Florinef, Midodrine, Klonopin (POTS); Iron (Anemia)
Past Meds: Prednisone, 5-ASA, 6-MP, Imuran, Flagyl, Bentyl, Celebrex...you name it!
Other issues: POTS, SpA, Anemia
07-06-2015, 11:02 PM   #73
duh panda
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The first 2 months or so we're pretty rough getting going with mtx. But as it's gone on the exhaustion/ nausea/ feverish sensation has lessened in intensity and time wise. Been 7 months and now the injections don't interrupt weekly routine nearly at all.

I did notice I felt less crummy when adding in folic acid. If you havent already, I'd mention your concerns to your gi and see if they think that could be beneficial. Or if lowering the dose and building up over time is an option for you. Hope you notice better things soon, is a tough call when meds work but side effects are as terrible or worse then the disease being treated.
07-06-2015, 11:22 PM   #74
astarks
 
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Thanks for the quick response Duh Panda. I've been on the MTX for about 3 months now, so I'm still holding out hope that over time the side effects might lessen somewhat. I've been on 1 mg/day of folic acid since I started the injections, but maybe I could talk to the doc about whether upping that dose might be helpful.

Side effects vs. benefits is always a tough choice, you're right. I think I'm going to stick out the MTX for now, but if I haven't managed to work out some of the after-effects of the injection by 8 or 9 months in, I might talk to the doc about finding something else. Decisions, decisions.
08-01-2015, 12:09 PM   #75
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Anybody on MTX and Entyvio?
Thanks
08-01-2015, 12:21 PM   #76
Robrich
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Yes I am.
Adding MTX was very helpful.
I had a very limited response to entyvio.
Added 25 mg MTX inj and within a month improvement was quite noticeable.
Reduced pred from 40mg/d to 10.
Inflammation in rectum cleared up.
Now on 15mg/d MTX -and Entyvio every 4 weeks
Definitely worth a try.
Good luck!
08-01-2015, 01:07 PM   #77
CD mom
 
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Yes I am.
Adding MTX was very helpful.
I had a very limited response to entyvio.
Added 25 mg MTX inj and within a month improvement was quite noticeable.
Reduced pred from 40mg/d to 10.
Inflammation in rectum cleared up.
Now on 15mg/d MTX -and Entyvio every 4 weeks
Definitely worth a try.
Good luck!
Thanks for your prompt response.
Any side effects?
Son on Entyvio and after 7 months still very ill. Undergoing another resection and removal of 3/4 of his colon. Temporary ileostomy. Plan is to keep him on Entyvio and add Methotrexate. No longer able to take steroids as he has osteoporosis. Anemic and malnourished.
Diagnosed at age 8. Currently 24 y/o
08-01-2015, 01:50 PM   #78
Robrich
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Some nausea and fatigue from MTX at first. Diminished over time on the lower dose.
No issues with ENTYVIO
08-03-2015, 10:38 AM   #79
astarks
 
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CD Mom: I'm not on entyvio, but I would say that the MTX injections have been very helpful for me, especially for my arthritis. I take it in combo with Remicade for the CD.

The oral form made me sick as a dog, and the injections had some bad side effects at first too, but I've been doing the injectable form for about four months now, and as of the last 3-4 weeks, my side effects have been minimal. I guess I would just say to stick it out for a while. It might not seem ideal at first - when I began taking it, I was easily sick for 3-4 days out of the week from side effects - but after a while it really made a difference.
11-10-2015, 05:42 PM   #80
duh panda
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Coming up on a year on MTX and 4 migraines so far this month

They were an issue in the first 2 months, trailed off, and are now hitting again in frequency and intensity often lasting well into a second day.

I'm curious if there are any others active in this thread (or used to be active, no longer are, but still subscribed) who have seen headaches diminish after initial build up of MTX only to return 10x worse then before later on.

What did you do?

Currently, I get about 1 really reliably good day a week. This is more stability then I saw pre-MTX. But, The last month or so I've been laid up unable to function or hold down fluids 2-3 days/ week. I want to take MTX out of the picture, but while the lows are increasingly low the good days lately are exponentially better then I've seen in the last 2 years. I'm nervous/ scared risking even that one usually solid day but at the same time am eager to enjoy a majority of "good" days - not pain or days spent dealing with med backlash.
12-06-2015, 03:48 PM   #81
DanaBanana
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I've had a steady fever since last Monday. I inject Thursday evenings. I'm in it 5 weeks now, 25mg. Today my other half tracked down my gi Doc at work (we are both healthcare workers. Though I've been on leave since July when I got too sick), anyhow...He decided immediately that I should switch to pill form at a lower dose for the next four weeks and ordered a batch of blood work because I shouldn't be fevered like this.
Im scared to do these pill form, as I know it's tendency to bring nausea is higher than that of injection and thats one thing I haven't had to deal with yet...I've had zero nausea with the injection...just this bloody fever and the hangover feeling post injection for 2 days. But I'll give it a go because he's the expert. Lol
12-06-2015, 05:15 PM   #82
lgpcarter
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I'm on 12.5 a weekly with the pills and the I had nausea at first, but got better after a few weeks. I am usually tired the day after I take the pills, but not too bad other than that.
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Diagnosed in with Crohn's in large and small bowel in 2000.

Seton placement (2) and fistulotomy December 2013. Setons removed July 2014.

Laparoscopic Right Hemicolectomy July 2016, 25 cms removed

Current meds: Entyvio every 4 weeks, Imuran 50 mg, Flagyl and Cipro 500 mg twice a day
Previously: Remicade, Humira, Simponi, Pentasa, Sulphasalazine, Entocort, Stelara, Methotrexate, Prednisone
12-06-2015, 05:29 PM   #83
DanaBanana
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I'm on 12.5 a weekly with the pills and the I had nausea at first, but got better after a few weeks. I am usually tired the day after I take the pills, but not too bad other than that.
Thank you for sharing that.. It gives me hope! I'm definitely curious about how I will feel post pill dose vrs the injection. My 2 days after injection are a complete write off... I just feel like I'm dying, but like I said, no nausea so I've been just clinging to that as my reason to be grateful, telling myself "at least you're not nauseated!" lol
12-06-2015, 05:36 PM   #84
lgpcarter
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I usually take it on Sunday evening, and then feel pretty tired for most of the day on Monday. Stool usually a little softer that day too. Other than that, tolerating it pretty well. Did take a few weeks to get used to it, though.
12-06-2015, 05:40 PM   #85
DanaBanana
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Yah the injection makes me run to the bathroom all the next day...can't trust a fart lol
I gotta say, since this all started you would never hear me say something like that. I'm so shy regarding "number 2". The first time I had to say to the Dr "mucous in my stool" I just about died! Lol
12-25-2015, 05:29 PM   #86
Whit
 
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I'm on 12.5 pills a week and I take my dose on Monday evening. Tuesday I am very tired and often drop mucous uncontrollably into my underwear which is very annoying. Wednesday I feel better and by Thursday I am OK but my energy level has been way down since Crohn's diagnosis. It is hard to know if it is the disease or the chemo.
I get chilled easily and one question maybe someone can answer? I have a tender spot on the left side of my lower abdomen. It gets hot to the touch and will sometimes go away but then comes back. Ultrasound was negative and my DR. thinks it is just a pulled muscle but I don't agree. I think it is related to either Crohns or chemo. Anyone else have this weird issue?
Thanks,
WHit
12-29-2015, 06:15 AM   #87
astarks
 
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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?
12-29-2015, 09:35 AM   #88
Whit
 
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Nothing from my dr but other people on this forum have complained of severe headaches associated with MTX. Sorry this is happening to you. Good luck and also, my dr. is very good but keeps telling me that everybody reacts differently to MTX as far as side effects are concerned.
Whit
12-29-2015, 09:49 PM   #89
DanaBanana
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I'm prone to migraines but thankfully have had very few since beginning MTX, however I was warned they could increase.
My gi Doc switched me from 25mg injections to 20mg pills 2 weeks ago. Not fairing well with the pill form as it's been causing awful digestive issues, so I'm thinking going back to the injection but at 20mg might be worth a shot. We shall see...I don't see him until Jan 16.
I'm also looking at going for some acupuncture. I've read great stuff about it helping crohns. I had some combined with physio when I tore my rotator cuff years back, and it was wonderful.
12-30-2015, 05:03 AM   #90
astarks
 
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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!
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