nervous about starting MTX

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vitaka
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Date Joined Jun 2006
Total Posts : 887
   Posted 10/12/2009 12:19 PM (GMT -7)   
So I finally saw a rheumy today and she is putting me on methotrexate (plus folic acid). I know some people on the board are on MTX and was hoping they'd share their experiences. I'm most nervous about the nausea, as I already deal with a lot of nausea issues without drug side effects. What kinds of side effects have other people had? When would people advise the best time to take the weekly dose (e.g., on the weekend)?

Also, I've also gotten mixed statements on MTX and alcohol -- my bf's rheumy, for example, told him he could pretty much have one drink a day. When I asked my doc about drinking, she said, well you can drink on your birthday. I realize I can't drink like I used to, but is it ok to have a glass of wine with dinner once or twice a week?
29f, PhD student, originally diagnosed with Crohn's in 2/06.
10/09: Prometheus test shows results consistent with UC
Rheumatologist appointment 10/12 to address severe joint pain
Currently taking: 2g Pentasa, 20mg prednisone, 150mg Trazadone, multivitamin, vitamin D, magnesium, probiotics


ZenaWP
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Date Joined Aug 2007
Total Posts : 884
   Posted 10/12/2009 12:24 PM (GMT -7)   
I was told an occasional drink on methotrexate was okay but to really limit it.  I don't drink anyway, so I didn't ask what "occasional" meant.  When I first started mtx, I was on the pills and they really hurt my stomach, so we switched to injections.  I didn't notice any side effects, but my liver enzymes became very elevated and I had to stop the injections.  Mtx was helping more than anything else with the arthritis so I was very upset.  Once my enzymes came back down, we tried again at a lower dosage, but I just found out last week that my enzymes are up again and I have to stop for good.  =( 

I injected on Monday evening after work, just because that's the day I first got my medication.  I didn't notice any side effects.  It didn't make me tired like the Humira shots occasionally did, so I think I would have been fine injecting any time of day.  You don't have to ice or premedicate (at least I didn't) like you do with the biologics, so it is very quick!  And it doesn't sting.  =)
Crohn's Disease, Acid Reflux/Gastritis, Hashimoto's Thyroiditis, Endometriosis, Arthritis, Depression/Anxiety.  Too many meds to list them all.  =) 


lilcrohnieUK
Regular Member


Date Joined Dec 2007
Total Posts : 414
   Posted 10/12/2009 4:06 PM (GMT -7)   
I take it on a Sunday or Monday night just before I go to sleep (sleep off most of the side-effects that way) and take a prochlorperazine tablet on waking to deal with nausea (tried several anti-nausea/sickness meds and this one worked best for me) the nausea should be able to be controlled, if you take it at night and avoid strong smells the next day that helps a lot.
 
They day I take it will often vary slightly - either 24 hours early or late depending on if I've been out drinking (I'm a uni student and drink like one, doctors are cool with it as my liver function has remained stable despite this for 7 years - they're more concerned that I live my life normally and happily while I can)
 
I DON'T drink for at least 24 hours before or after my injection, this is just sensible as you don't want your liver to be having too much to process as you will feel like pretty rotten and its not good for it either.
 
The first couple of doses I took did affect me strongly but this calmed down once my body had got used to the drug (we're talking intense nausea, headaches, visual disturbances - another good reason to take it just before you sleep) but these all subsided once I'd had a few doses. When you first start taking it it might be worth doing on the weekend so it doesn't affect your work or whatever (if you do work or whatever) and you can have a day to chill if you do get side-effects, once you're used to the drug and side-effects are under control you can then consider changing the day if you wish.
 
Are they putting you on tablets or injections? I've been on both and in my experience the injections give less side-effects - the nauseas definitely lessened so if nauseas an issue for you it might be worth seeing if they'll put you on injections if they aren't already.
 
 


LBJ
Veteran Member


Date Joined May 2005
Total Posts : 511
   Posted 10/12/2009 4:22 PM (GMT -7)   
I had a hard time on it. At first I took mid week and I had to eventually move it to a Friday night so I had the weekend to be sick.
Saturdays were usually a very big down day for me when I was on it. But don't let this scare you into taking it. I know some
people who take it and love it and have no problems on it. Everyone is different. I had to eventually stop it because I started
getting really bad chest colds. I would come down sick and have to go to my family doctor for meds. I would take the meds,
get better, do my shot, and then come down sick again. It was crazy.
Living with Crohn's Disease since Jan./2000 
I'm a true Crohnie with IBS and Arthrities too. I have Crohn's very mild compared to a lot of Crohn's people.
 
Meds I have tried:  Too many to list- LOL
Meds currently on:  Tramadol for the pain
                               Cimzia Injections. Just started on 9/30/2009                      
No Surgeries
 


vitaka
Veteran Member


Date Joined Jun 2006
Total Posts : 887
   Posted 10/12/2009 7:30 PM (GMT -7)   
They gave me pills, 3x 2.5mg to take once a week.

LilCrohnie, the anti-nausea med you refer to, prochlorperazine, is that a prescription? I'm thinking I may call the rheumy's office and express my concern about the nausea and see what they suggest. I supposedly have no disease activity at the moment and I am still dealing with nausea several days a week. Alternatively, I could just ask to be put on sulfasalazine, as I know that doesn't have nearly the side effects, but I'm not sure yet. I hate having to make these decisions.
29f, PhD student, originally diagnosed with Crohn's in 2/06
10/09: Prometheus test shows results consistent with UC
10/12/09: beginning treatment for arthritis
Currently taking: 7.5mg methotrexate weekly (pills), 2g Pentasa, tapering from 20mg prednisone, 150mg Trazadone, multivitamin, vitamin D, magnesium, probiotics, folic acid


ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 10/12/2009 7:34 PM (GMT -7)   
I think you've been given good advice here:

a. try taking at night, so you can sleep off the worst of the side effects
b. try to take it on a day when you KNOW you're unlikely to have high-pressure activities for the next few days. For me, this is Friday, but you might like to choose a different day if you're very active on weekends.

Have you checked out the new meds thread in my sig? Lots of good advice there (but wonky formatting; sorry; I'll fix it one day).

Ivy.
Co-Moderator Crohn's Forum.

Medications for Crohn's ~~ Diet and Nutritional Therapy for Crohn's ~~ Dealing with Abscesses and Fistulae ~~


lilcrohnieUK
Regular Member


Date Joined Dec 2007
Total Posts : 414
   Posted 10/13/2009 5:20 AM (GMT -7)   
As far as I know it is prescription only, it also goes by the name Stemetil. Apparently it gets used quite a lot for chemo patients with nausea and sickness and I've found it to be very effective.
 
7.5mg is a relatively small dose so hopefully that shouldn't cause you too many problems, do they plan to taper you up or is that going to be your maintenance dose?
 
 
 
 


MMMNAVY
Veteran Member


Date Joined Jul 2006
Total Posts : 6927
   Posted 10/13/2009 8:37 AM (GMT -7)   
I have been taking 25mg injection weekly of MTX for more then 3 years. I just had a liver biosy in August and have some stage one out of six stenoius (sp?). I have had one drink since I turned 25 (I just do not like how it slows down me down for days later) and I am 31. So I have not had a single bit since I started on this med. Find an alternative treat beverage.
Forum Co-moderator - Crohn's Disease/Thyroid Disorders:_All comments have the caveat contact your local health care provider.

I will find a way or make one. –Phillip Sidney 1554-1586

All that I am and all that I shall ever be, I owe to my Angel Mother.

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Make sure your suffering has meaning…


Rider Fan
Veteran Member


Date Joined May 2008
Total Posts : 1445
   Posted 10/13/2009 10:52 AM (GMT -7)   
I was on 25mg mtx for about 6 months and didn't notice any major side effects, just some fatigue the day after and some hair thinning (no nausea). I took 1mg of folic acid a day. It didn't do much for my CD but it seems to work for many other. Good luck!
33 y/o male. Dx'ed in 1999. No surgeries.

Current meds: Humira 2/27/09. Proferrin iron pills.

Tried SCD, didn't work, now avoiding gluten and dairy.


Go Saskatchewan Roughriders!


vitaka
Veteran Member


Date Joined Jun 2006
Total Posts : 887
   Posted 10/13/2009 8:20 PM (GMT -7)   
lilcrohnie, to be honest, I have no idea what the plan is. My rheumy didn't get that far in the discussion, so I have no idea what the long-term plan would be. The rationale for prescribing MTX over sulfasalazine was that if we do add in Remicade down the line, the MTX has been shown to be more effective in conjunction with the Remicade than the sulfasalazine. She basically just took my history, gave me a quick exam, asked some questions, and said that's what we're going to start with.

Of course, she's treating me for RA with no real proof that I have RA, which I'm not too huge a fan of. I don't know how long I'd have to be on MTX with no improvement before she'd up the dose or switch me to something else. But I imagine it's going to be at least 8-10 weeks before she runs bloodwork to test for inflammation based on my current pred taper schedule.
29f, PhD student, originally diagnosed with Crohn's in 2/06
10/09: Prometheus test shows results consistent with UC
10/12/09: beginning treatment for arthritis
Currently taking: 7.5mg methotrexate weekly (pills), 2g Pentasa, tapering from 20mg prednisone, 150mg Trazadone, multivitamin, vitamin D, magnesium, probiotics, folic acid


lilcrohnieUK
Regular Member


Date Joined Dec 2007
Total Posts : 414
   Posted 10/14/2009 4:04 AM (GMT -7)   
Very true, MTX is brilliant with remicade, it reduces the build up of antibodies and can prolong the effect of an infusion - its because I'm on MTX that I'm allowed to be on remicade and not have regular dosing (I only have it when I flare - so I have intervals of 6 months - 3 years between single infusions, the remission periods inbetween doses are maintained with just MTX)
 
If they're thinking that you will be having to have remicade in the future then this might just be the right choice, remicade can be such a lifeline its worth making sure it can really work to its best and prolong how long it can be used for.
 
My rheumy also treats my arthritis like its RA even though they're certain its not and is reactive/Crohn's arthritis but apparently the treatments are basically the same and the majority of RA treatments can benefit Crohn's too, thats why I was originally put on MTX rather than the safer azathioprine/Immuran as my arthritis was pretty bad at the time.
 
I think if they put you on the methotrexate it will probably be for longer than 8-10 weeks, I think it can take up to 12 to get the full effect but my bloodwork started improving also instantly and after about 6 weeks everything was notably better.
 
 


Rider Fan
Veteran Member


Date Joined May 2008
Total Posts : 1445
   Posted 10/14/2009 2:12 PM (GMT -7)   
Actually I believe the latest reserch shows that MTX doesn't reduce the antibodies contrary to what was first thought, but it can increase rate of remission when combined with remicade in some people. Imuran/6MP has the same effect.
33 y/o male. Dx'ed in 1999. No surgeries.

Current meds: Humira 2/27/09. Proferrin iron pills.

Tried SCD, didn't work, now avoiding gluten and dairy.


Go Saskatchewan Roughriders!


vitaka
Veteran Member


Date Joined Jun 2006
Total Posts : 887
   Posted 10/25/2009 4:41 PM (GMT -7)   
For those of you on MTX, I have a question...

I took my second dose on Friday night before bed. I was ok on Saturday, a little more fatigued than usual, but today (Sunday) I have been extremely fatigued. I couldn't even drag myself out of bed until noon (I normally get up at 8am on Sundays) and I have been struggling to keep my eyes open all day. I'm not sure if this is some delayed effect from the MTX or because of other reasons.

I've also been having issues with being really lightheaded/having trouble concentrating over the past week. If others have had this issue with MTX, does it go away after awhile?

I'm really hoping these side effects (assuming they are because of the MTX) go away ASAP as I am having a really hard time keeping up with my schoolwork and I'm in a super busy part of the semester.
29f, PhD student, originally diagnosed with Crohn's in 2/06
10/09: Prometheus test shows results consistent with UC
10/12/09: beginning treatment for arthritis
Currently taking: 7.5mg methotrexate weekly (pills), 2g Pentasa, tapering from 20mg prednisone, 150mg Trazadone, multivitamin, vitamin D, magnesium, probiotics, folic acid


lilcrohnieUK
Regular Member


Date Joined Dec 2007
Total Posts : 414
   Posted 10/25/2009 5:04 PM (GMT -7)   
From what I can remember I think it was about the first month (so roughly 4 doses) I struggled most with side-effects - visual disturbances, light-headed, dozy and scatty. Its so long ago for me now I can't remember if I did anything that helped but it DID ease off. I do remember that it did only last about a month anyway and then it would just be the day after I'd be affected, so I used to do it on a Saturday night when I could lie-in the next day and sleep as much as I needed and had nothing important to do that day so I could just relax.
 
Make sure you are drinking extra water the couple of days before and after, keep hydrated and keep your liver happy, I always make sure I do that otherwise I'll feel 'hungover' (even though I never drink before or after the dose!) the last few years I'm only side-effecty occasionally when I wake the following morning and I'm over it after a few hours.
 
Sorry haven't really been helpful, someone else might have some suggestions but it will take a few doses for your body to get used to having it, I know its annoying but it should get easier over the coming weeks with each dose.
 
 

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