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


 
11-03-2014, 01:17 PM   #31
fissure2
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i just came off prednisone at the same time, ive noticed only tiny improvement so far
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11-07-2014, 04:11 PM   #32
mvond5
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Son is 16 plays on 2 ice hockey teams and he's been doing the SCD diet for 2.5 years. His blood work has been going into the positive direction. Until May after he got mono everything seems to be going wrong. Blood work, calprotectin going in the wrong direction. Doctor put him on Apriso back several months ago and we are still not seeing any improvement. Doctor now want my son to go on Methotrexate which we are unsure about but Doctor's office feels like this is his best option to stop the inflammation before it gets too bad.
What is your thoughts?
11-07-2014, 04:47 PM   #33
Jay Woodman
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Methotrexate at 12.5 mg appears to be initiating D. Week 1 - First day after first night was uneventful. Then D started out of nowhere. Week 2 - D next morning & everyday since ....Not sure if anyone else has had this occurr...
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11-07-2014, 06:19 PM   #34
fissure2
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yea, injection day was good, but didnt last. i had my second injection yesterday. will get blood work back tues.
11-08-2014, 04:48 AM   #35
Tony H
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I'm still doing ok , no nausea this week but was fairly tired for a few days, joint pain seems better this week but a few creaks in the joints today , hop the d clears up Jay .
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11-08-2014, 11:13 AM   #36
Jay Woodman
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I'm still doing ok , no nausea this week but was fairly tired for a few days, joint pain seems better this week but a few creaks in the joints today , hop the d clears up Jay .
Thanks Tony! I will touch base with my GI.
11-12-2014, 05:51 AM   #37
Tony H
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not feeling the best yesterday and today , a bit nauseous and stomach does not feel great , not d but a lot looser .
11-12-2014, 06:42 AM   #38
mvond5
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I am still on the fence. I know his symptoms via blood work and calprotectin have moved up. But they. Are still pretty low. It just seems like there has to be something out there that's a little more mild on his body.
11-20-2014, 12:49 PM   #39
Grumpy1
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Okay am starting methotrexate tomorrow taking with, 20mg of pred per day until mtx takes effect, 1 shot of Humira every week (as 1 shot every 2 weeks didn't work) and 1 mg of folic acid every day - other than running screaming from the room does anyone have any advice? This is my Hail Mary Pass - nothing else has worked for me and I am allergic to remicade and Imuran. I have to have an MRI within the next couple of weeks because they are scared that the pred has caused a problem with my hip so I am really hoping that the mtx works.
11-20-2014, 05:33 PM   #40
Tony H
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good luck with the mtx Grumpy1 , I'm a month into it now and I'm going to 15mg this week , so far no improvement on the joint pain which is what im primarily taking it for , the nausea has decreased since I upped the folic acid to 800 micrograms a day .
11-20-2014, 05:42 PM   #41
Grumpy1
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Thanks Tony, I hope that it works. I'm really nervous about it but I'm keeping all my fingers crossed. I hope you feel better soon too!
11-20-2014, 08:49 PM   #42
Jay Woodman
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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.
11-21-2014, 06:12 PM   #43
duh panda
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After working my way through everything including all TNF-blockers I'm currently taking Entyvio and 20mg pred. Since starting the Entyvio there has been decreased signs of disease in the large bowel. Adding in Methotrexate (pill form) on Monday to try to get small bowel under control and off the prednisone. After 9 years of active disease and 2 years of increasing flare in severeness regardless of treatment I'm all in. Here's to hoping for good results in the upcoming weeks!
11-23-2014, 05:22 AM   #44
Tony H
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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 wgrith the Remicade as Combo Therapy, at least, at the current time.
Hi Jay , no improvement yet , I'm going up to 15mg today so hopefully that might kickstart an improvement , great that you are improving .
12-14-2014, 12:54 AM   #45
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I have been on mtx for 4 months - once a week injection along with Humira. I am very tired and sick the day of and the day after the injection. I feel nauseas and have a headache. I feel great after that and am so grateful the meds are working. its really wonderful.
12-14-2014, 03:44 AM   #46
Layla
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I've just started MTX, last Wednesday was the second shot. I don't mind doing the injection nearly as much as I thought I might, the needle is truly tiny and the MTX doesn't sting when it goes in. I was nauseous last Saturday though, not really bad but there all the same. Could this still be from the MTX, 3 days after?
Otherwise I notice no difference and have upped the Pred back to 15mg hoping that will be enough until the MTX kicks in.
I'm on 25mg of MTX, 15mg of Pred and 1gram of Pentasa 4 times a day and a bunch of supplements like vit d, zinc, magnesium etc.
Still have plenty of D although I've now started back on a low fibre diet which is helping some and also quite fatigued but still do-able.
I also take folic acid, 5mg once a week the day after I do the MTX. Is this what you guys have been told to do too? The pharmacy said I should take it 2 days before the MTX but the GI said the day after.
And what is the folic acid supposed to help with? Would taking more spread out over the week help with the fatigue?
12-14-2014, 07:11 PM   #47
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Layla, The folic acid helps with the nausea. I take 1 mg every day and 2 mg on the day of my injection. i have noticed a huge difference in symptoms since starting folic acid.

also, zolfran helps with the nausea.
12-14-2014, 11:33 PM   #48
duh panda
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I didn't think I would feel excited for my injections when I was given the choice to start MTX - and went to pick up the prescription only to be handed a syringe and vials. But, for the first time in a year I'm seeing success in tapering off of prednisone. Every shot means another 5mg taper; and it is stupid easy, not to mention painless, compared to Cimzia and Humira injections.

Certainly been noticing a lot of nausea and increase in fatigue/ exhaustion day of and up to 2 days after injections to the point of vomiting twice when taking my daily walk this Past week. Appreciate the info keanobrian.
12-15-2014, 02:52 AM   #49
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That's so great it's helping you too!!! I am able to taper off prednisone for the first time in 1.5 years. Sadly, they just diagnosed me with ITP which is treated with presnisone, so I am figuring out what the solution is.

I know mtx is a big deal drug, but having symptom relief and only feeling "really sick" 2 days a week is pretty rad!!!


01-16-2015, 06:46 PM   #50
Layla
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The nausea got worse and some days even an anti-emetic wasn't helping much so now I'm on 5mg folic acid 3 times a week rather than just once and so far so good! I take the shot on Wednesday so take the folic acid on Thursday, Saturday and Monday.

I was also getting cracks in the corners of my mouth that weren't healing, apparently that's due to malnutrition and the folic acid should help with that too.

Sadly it's not doing much for my gut, still have lots of D and urgency, my joints are more painful than they were and my feet and calves are cramping all the time, preferably in the middle of the night. I've been taking magnesium to help with that but that causes D so I'm not sure what to do about that. I'm seeing my GP next week, hopefully she'll have some options.

Despite all that I've lowered the pred to 5mg as I've been on it for more than 6 months and I really want to get rid of it!

I've been on 25mg of MTX for 7 weeks, should it be working by now?
02-08-2015, 03:32 AM   #51
Layla
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Well. I've managed to get of the pred, woohoo! Not that the MTX is doing anything noticeable but I figured not being on pred for a while must be good.

As I said before I had no issues with the first few injections, however the last 2 injections have started to hurt, I can feel a sting when it goes in and it lasts for quite a while afterwards. Has anyone else has this happen?
It's not terribly painful but certainly different than before.
02-08-2015, 04:15 AM   #52
Droopy Drawers
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Well. I've managed to get of the pred, woohoo! Not that the MTX is doing anything noticeable but I figured not being on pred for a while must be good.

As I said before I had no issues with the first few injections, however the last 2 injections have started to hurt, I can feel a sting when it goes in and it lasts for quite a while afterwards. Has anyone else has this happen?
It's not terribly painful but certainly different than before.
Are you letting the skin dry from the alcohol swab before you inject ?
Also, pinch the skin up between your thumb & forefinger & rotate injection sites

Upper thigh worked best for me
02-08-2015, 09:29 AM   #53
Lady Organic
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Well. I've managed to get of the pred, woohoo! Not that the MTX is doing anything noticeable but I figured not being on pred for a while must be good.

As I said before I had no issues with the first few injections, however the last 2 injections have started to hurt, I can feel a sting when it goes in and it lasts for quite a while afterwards. Has anyone else has this happen?
It's not terribly painful but certainly different than before.
yes this could happend to me on occasions too. nothing to worry at all. I thought this could be due to tiny blood vessels exploding, but it may also be the alcohol as DD pointed out.
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02-13-2015, 09:41 PM   #54
Layla
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Thanks Droopy Drawers and Lady Organic, I tried waiting until the alcohol was dry and it made a big difference!

I probably only have 4 more injections of MTX to go as I've just started Humira, now those hurt, especially in the thigh!
03-16-2015, 07:36 AM   #55
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First time posting in this particular support group so hello everyone!

I've been on 25 mg/week since the beginning of December (along with Entyvio since October) and am really struggling with the hair loss. It's been 3 months and it's still falling out like crazy. I used to have beautiful thick hair and I've probably lost about 1/3 of it at this point. I'm frustrated with my doctors because I only agreed to go on methotrexate for 1-2 months to get me by and now they won't let me come off of it. I know that my health is what's most important, but as a woman I'm just having a very difficult time feeling confident in my appearance anymore.
03-16-2015, 10:40 AM   #56
duh panda
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Hey K_dubs!

So sorry to hear you're struggling with the hair loss. It can be a large blow to self-confidence regardless of age or gender.

Sounds pretty much where I've been at too the last couple of months but was never given the belief that I would be coming off methotrexate - just hoping to get off pred. with no luck. Lucky for me most of the men in my life are balding or bald so... it helps keep it in perspective, and my mom is a hair dresser so I can have her cut and cut until I feel good about what I have. It pays off to have a good hairdresser in your life who you can trust no matter who you are!

I had my mom cut my hair off into a full pixie after a lot of debate and trying to maintain what I had to get through my sister's wedding this last fall. Mom cried while I was just grinning the entire time. I was so tired and depressed at being able to see how much hair I was losing. It's still very thin, and filled with lots of baby fuzz that seems to fall out just as a new batch starts growing in but sometimes it's not about what you don't have currently, but what you can do with what you still have.

I find it is just as important - if not more so - to invest regularly in the little things whether it be switching up a hair style, going out with friends for a manicure (or doing an at home girls night), getting a facial when prednisone/ meds takes over, or just spending some time over coffee/ tea with a couple of people whose company you enjoy.

There is a certain amount of pride to be had when we look however we look due to striving for health. Don't let the mirror fool you into thinking otherwise, and when it does - do something for you to prove it wrong.
03-16-2015, 03:42 PM   #57
Droopy Drawers
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Ask about Folic acid

It help slow my hair thinning
03-16-2015, 06:46 PM   #58
Robrich
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K dubs
I too am on Entyvio and MTX. NO HAIR LOSS JUST FATIGUE
ARE YOU INJECTING OR TAKING PILLS?

I opted for the injections as they have fewer side effects.
Going to ask to lower dosage maybe that's a good compromise for you too?
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03-17-2015, 07:42 AM   #59
k_dubs25
 
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Thank you so much for the replies everyone!

Duhpanda, I'm going to get a haircut tonight, only a few inches off so I'm not as brave as you! I'm hoping that will help make it not quite as noticeable. I love your suggestion of doing other things to feel good like manicures!

Droopy Drawers, I do have folic acid but it seems only to give me bad acne rather than helping with my hair!

Robrich, I take the pills. My doctor didn't think it came in pen form (which I used for Humira) and I don't think I'd be able to give myself regular injections. The pills also seemed like they'd make things easier in the long run since I don't have to worry about refrigeration. I am definitely hoping to lower my dose, I just wish I knew if it's the mtx or Entyvio that's making me feel better! Do plan on continuing on the combo or eventually going to just Entyvio?
03-17-2015, 11:58 AM   #60
Robrich
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K dubs
I never Gave myself an injection until MTX, hate needles. But desperate for results without side effects. No pens, no need for refrigeration, needle is very thin and It is over in a flash, not so bad. Better than hair falling out.
It's probably the combo making you feel better. Seems there is rarely a magic bullet.
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