New to Methotrexate and really unsure

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rootsmith
Veteran Member


Date Joined Jan 2004
Total Posts : 598
   Posted 6/15/2008 9:44 PM (GMT -7)   
I had a follow up appt with the rheumatologist after the prednisone trial.  I'm now on 10mg.  It helps a lot, but nto as much as 30mg did. On that I felt almost completely normal.  The only side effect that was noticeable to me was sleep disturbance but I know that there are many other side effects that may not be noticeable right away.
 
He gave me some options which were to inject my feet with steroids or to start methotrexate.  The podiatrist did the foot injection which did not help much. I told him that even though I liked that my feet were much better (remembering that they probably wouldn't be once I am off the oral pred) , I really liked feeling so normal and want to try methotrexate.I will need to taper down to 5mg pred after one month and I also have to get blood work done monthly.
 
I have the prescriptions for both MTX and folic acid.  Its my choice when I start and that is where my problem is. I'm so worried that I will have awful side effects and right now I am so busy I don't have time for that. The literature they gave me said that side effects usually occur two days after taking the medication and then usually lessen. So I'm trying to decide which 2 days of the week I can spare.  
 
Another problem is that a recent CT Scan (for urological workup) showed the possibility of gallstones. I go for an ultrasound this week.  The feeling seems to be that if the US confirms gallstones, the gall bladder should be removed as it almost always happens at an inconvenient time. I don't want to wait until later to try MTX, yet having elective surgery while on it seems complicated. The last time I saw this doctor (5 years ago) I postponed taking a medication he prescribed because I had a gi workup coming up and didn't want to throw another med into the mix. I think he was annoyed by that and don't want that to happen again.
 
Sorry this is long.  I'm interested in any advice about how to handle the side effects of methotrexate, how long do they last, how long will I have to continue having monthly bloodwork.  I checked the links provided and while helpful, hearing someone's personal experience would be great.  Am I going to feel rotten and if so, for  how long?
 
Thanks  
 
Chris  
10 years, many tests, 3 gi doctors, Pentasa 1000mg 3x day
diovan, simvastatin, sertraline, lyrica, 10mg prednisone, next???   


jan2003
Regular Member


Date Joined Jul 2004
Total Posts : 92
   Posted 6/16/2008 8:06 AM (GMT -7)   

I took oral methotrexate for awhile (as much as 20 mg per week). My side effects included headaches, fatigue and a general feeling of being "dopey" in the head. I don't know how else to describe it - I hated it! I'm currently on Enbrel, and although my rheumy believes Enbrel works better along with methotrexate, I have declined the mtx.

Have you been prescribed oral or injectable mtx? Some people have different side effects depending on which form of mtx they take.

By the way, there is a long thread on the HW Arthritis forum, click here:  

http://www.healingwell.com/community/default.aspx?f=10&m=1043483  dealing with this very topic. 

Good luck to you.

Jan

 

Post Edited (jan2003) : 6/16/2008 5:26:00 PM (GMT-6)


sr5599
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Date Joined Aug 2007
Total Posts : 1202
   Posted 6/16/2008 8:29 AM (GMT -7)   
I was terrified to start MTX. I took it only a few months because it did not seem to help me get better. But, I did not notice any side effects until I'd been on it a couple months. Then there seemed to be a little hair loss. But, I don't really know because I quit it so soon after.

The shots were scary to give myself at first, but after a while they were easy. They don't hurt at all, unlike the Humira shots which sting. And the needles are so sharp and thin that I really didn't feel it going in at all.

I tried MTX while I was still on Remicade.

Good luck...
--40 year old female, dx as UC in '04 (1st symptoms in '03), switched to Crohn's in '05, 1 fistula, crohn's colitis, limited to large intestine
--rejected (reaction/didn't work): Asacol, AZA, 6-MP, MTX, Remicade, Humira, prednisone
--methylpred - finally off 6/15/08, tried Prochymal in Phase III study (can't wait til it's approved!)
--started Tysabri 3/21/08, started Xifanan 5/24/08 
--single mom to 10-yr-old girl


MMMNAVY
Veteran Member


Date Joined Jul 2006
Total Posts : 6927
   Posted 6/16/2008 8:51 AM (GMT -7)   
Has been the only thing that has helped me. I take the MTX shots. I did not get a prescription for folic acid until my hair really started falling out. I still have enough but wish I would have really taken the folic acid.
Forum Co-moderator - Crohn's Disease
We will find a way, or make one.-Hannibal (crossing the Alps in the 15th Century on war elephants) 
Make sure your suffering has meaning...-?
All suggestions/options/opinions are caveated with please consult with your local health care provider...

Post Edited (MMMNAVY) : 6/16/2008 12:58:16 PM (GMT-6)


bektold
Regular Member


Date Joined Jul 2007
Total Posts : 456
   Posted 6/16/2008 9:11 AM (GMT -7)   
I'm surprised they're so hot to remove your gall bladder.  During an ultrasound last year they discovered a 2.5cm gall stone in me.  The GI's response was "it's not bothering you, so we won't bother it."  If it's not actively causing you problems you might have trouble getting your insurance to cover it.  My dad, who was otherwise healthy, had gall stones and gall bladder problems for years, but it was never considered bad enough for the insurance company to pay for its removal.  He finally had it out Christmas Eve a year ago after a severe attack.  (You're right about it always happening at an inconvenient time.)

indigosunrise
Regular Member


Date Joined Nov 2007
Total Posts : 497
   Posted 6/16/2008 3:33 PM (GMT -7)   

Hi Rootsmith,

I started taking Methotrexate about two weeks ago, and my third dose is coming up on Wednesday.  I am taking it for Scleritis of the eye and I really hope it will help!  I am also on prednisone, to get it under control first, and I am starting to taper down on that.

I really have not noticed any side effects yet, but I am pretty sure I am on the lowest dose--7.5 mg a week. 

Sounds like I should get some folic acid to take along with it.

Take care and keep us updated on how it goes. 

--Indigo


sjkly
Veteran Member


Date Joined Dec 2007
Total Posts : 2113
   Posted 6/16/2008 4:01 PM (GMT -7)   
I am on week 10, I take 15mgs-had to work up to that. I really like it and have been able to get off of Prednisone after 8 months of having to take it in order to get through the day. I had some of the worst side effects listed because I had a cross reaction with an NSAID I was taking at that I had one miserable week and since then have been fine-If you take enough Folic Acid the side effects diminish or even disappear. On 1mg of Folic Acid my saturdays were pretty much shot (I take the mtx on friday night as late as possible). The day I started taking 3 mgs of folic acid per day I was fine I no longer get any next day fatique and I never had GI side effects. There is a thread on the RA board about starting mtx where a bunch of us have told week by week stories of starting this med and dealing with side effects if interested pop by and read it it is always on the first page on the board.
Sj

SydneyJo
Veteran Member


Date Joined Mar 2006
Total Posts : 1354
   Posted 6/16/2008 5:25 PM (GMT -7)   
Hi Chris,
I have been taking MTX for just over two years now - at 25mg orally - once a week (I take it late at night to hopefully sleep through side effects). My side effects are hair loss and sun sensitivity, oh and the occassional headache. I also take folic acid - but that hasnt really helped with hairloss. I feel the MTX works great for my AS but dont think it does much for the Crohns. I have bloodwork done every six weeks. I had a bowel resection done last Sept. and was told to stop taking the MTX two weeks prior to op, but to still take the pred. I dont see why you wouldnt be able to start it now and then stop when your surgery is due.
Take care
Joanne

angelang40
Regular Member


Date Joined Sep 2007
Total Posts : 160
   Posted 6/20/2008 3:07 AM (GMT -7)   
i was on methotrexate injections for a year then started oral methotrexate this year this really helped me!iv enow been hospital free for 18 months now !(yahoo)inever really had all that many side effects apart from my hair falling out in shreds this has worked out really well for me and my condition as my crohns is now under control except when i eat pizzas with double cheese!grrrrrrrrrrrrrr
We just have to eat them god damm pizzas lol!

LBJ
Veteran Member


Date Joined May 2005
Total Posts : 511
   Posted 6/20/2008 5:08 AM (GMT -7)   
I just started methotrexate this week Wednesday. I did first injection in the morning at the hospital after I had my colonoscopy.
They had to teach me how to do it so I had it in the morning. Well the side effects hit me Thurs. morning about 24 hours after
injection. I had a metal taste in my mouth, felt tired and dizzy. Day two (this morning) I woke up feeling really dizzy and
nauesa's. And my head feels real heavy. I called off work today. My doctor did tell me to take it at night time so I'm
hoping next week when I take it at night that I won't notice the side effects too bad.
Living with Crohn's Disease since Jan./2000 but had a few years prior
I'm a true Crohnie with IBS too
 
Meds I have tried:  Just about everything 
Meds currently on:  Prednisone 30mg tapering
                           Methotrexate injection 12wks
                           Folic Acid
                           Wellbutrin
No Surgeries
 


nhmas
Regular Member


Date Joined Feb 2005
Total Posts : 44
   Posted 6/20/2008 6:37 AM (GMT -7)   
I do my injections on Friday night.  Like you, I did my first injection at the doctor's office.  What the NP told me to do was to do the injection every 6 days until I got to the day I wanted to do my injection, then continue every 7 days.  She suggested that I do it on Friday night and she was right on. 
 
For the nausea, they can probably prescribe you something for it like Zofran.  This was suggested to me as well, but I never needed it.  You may want to call your doctor about these issues.
 
Hope you feel better.  After 2 months, I'm actually feeling pretty good, but I had bad days at first. 
 
Mary
Diagnosed with UC in 1992 (Left Sided - first few flares, Pancolitis 3rd flare). 
10 year remission
Flaring on and off since Jan 2005, currently suspected to have Crohn's
Current medications: Weekly MTX injections, monthly B12 injections, Calcium, Folic Acid, Xifaxan
Past Medications:  All 5ASA oral medications except Dipentum (no effect), Immuran (toxic reaction), Prednisone, Flagyl, Cipro, Bactrim (sulfa drug allergy), Augmentin, Rowasa, Cortifoam, Cortenema.
 


rootsmith
Veteran Member


Date Joined Jan 2004
Total Posts : 598
   Posted 6/22/2008 9:55 PM (GMT -7)   
Hi:

Thanks for all your replies. I will get the prescription filled tomorrow and take my first dose late Wed night. I have the next 2 days off work, just in case.

about the gallstones- I had the ultrasound and have not heard anything. My experience has been that means there isn't a problem. But- will call in a week or two, since I don't see the GI office for 6 months. Pain is an indication for gall bladder surgery and most people with CD have some degree of pain.

A very interesting thing has occurred- I've been on 10mg of prednisone since 6/14. (and the 10 day trial of higher doses before that) I had an office visit at the hematologist on Friday who is following my low WBC count. For the first time in over 3 decades my WBC count was normal (that I know about but in recent years I have had it done often enough to pick it up) It was 5.9, up from 2.2 last March.

Chris
10 years, many tests, 3 gi doctors, Pentasa 1000mg 3x day
diovan, simvastatin, sertraline, lyrica, 10mg prednisone, next???   

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