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Started Methotrexate today.

C

Crohn's 35

Inactive Account
I just started Methotrexate, although I was on it before 7 years ago, my options have run out and now going a second try at it. My original bookings which started today was supposed to be every Wednesday. I wasn't overly impressed with the fact I had to wait 1.5 hours to get a 2 split second shot.

My husband and I were pressed for time for another appt for him. A few times I kept asking why it is taking soooooooo long. They didnt know why. The first time set up takes awhile and the medicine is expensive and they make sure you are there because it cant be saved. So the girl who gave me the shot, in the butt, says Fridays are slower get that day booked. They were not happy to change but my husbands flights are Wed and Thursday, so I dont have to stress out. So now it will be every Friday.

I am still on 35mg of prednisone taper 30mg Saturday. This blog will help me and others to see how it helps.

I invite others who are on it, to join me and support one another along the way. This has to be THE drug, there is nothing else, and I don't warrant surgery because I am not narrowing. I am staying positive, I want a better summer and no pain..What I would give for just one month of no pain.. Cheers!:)
 
K

kasper87

Me 2. But Why am i afraid? I hate the fact that I haven't injected yet.
i think it's because Im on heavy narcotics (Fentanyl).. Without it I can't eat right now.. But Im so tired. Afraid of everything on top of it.
 
Nyx

Nyx

Moderator
Good luck Pen..I hope it works for you! I've never been on it, so can't offer any words of wisdom or support. But, I'm going to keep following the thread and throw in the occasional "way to go!!" or "that's fantastic"! *brushes off her pompoms in the cheering section*
 
InkyStinky

InkyStinky

Location
USA
Pen, I'm praying that this works for you! I've never been on it so I don't have any words of wisdom, either, but I do so hope that you get to feeling better soon!

--Sabrina
 
Mountaingem

Mountaingem

Best wishes Penn, MTX works pretty well for me, but it's no match for the monster flare I'm having lately. I self-inject intramuscularly into the thigh-my doc says it's more effective than pills or sub-q, but he's a jerk so who knows lol.
 
C

Crohn's 35

Inactive Account
Thank you guys, so much... it means alot, because you guys know the drill of meds, and pain.

Today I got D for the first time, not sure if it was the apple I ate (no skin) or the Metho. I don't taper to 30mg til Friday, drinking lots of water, feel kinda dehydrated abit, but that is also from Prednisone... can't wait to get off that!
 
K

kasper87

im the same as hobo i guess. Been 3 hrs. Don't feel anything. Ate a bagel and cream cheese and a sandwich. No vomiting or headache.
 
C

Crohn's 35

Inactive Account
Thanks Hobo, I was on it years ago but I didnt last long because I had headaches and nausea, but so far so good. I see you are tapering to 20mg of Pred, good to know there is hope for me yet ;).

Kasper, glad you are able to eat withoug pain, love cream cheese but I avoid if for now. Old cheese I can eat no problem, white or soft...I pay.
 
CrohnsHobo

CrohnsHobo

I have had no side effects from the MTX.

I have been on 20 mg of the Pred for a little more than a month. I see my Dr. and the UCLA Dr. on the 22 and 24th and will probably go lower on the Pred then. They wanted to keep me at 30 mg for awhile, but I actually went down to 20mg on my own.

Hopefully you can start doing the same.
 
Fog Ducker

Fog Ducker

Hey Pen, hope the MTX helps you, It has helped me I think.
You said you stopped it years ago because of the nausea, did they give you any ondnsertron or anything to pre-med with this time?
 
Misty-Eyed

Misty-Eyed

Good luck! I'm jealous you get to still have it though :(

I used to have to drive for an hour to get to the hospital to have my shots. Was a pain in the arse. Ok, no puns intended. But it was worth it till I was well enough to switch to the tablet form.
 
C

Crohn's 35

Inactive Account
Hobo, your posts is one of the reasons I have re-entered the idea of being back on Methotrexate again... thanks for the positive posts.

Fog .. I was on a crap load of drugs 7 years ago and really sick, full dosages of Cipro, Flagyl and Methotrexate and the idiot GI at that time never mentioned Folic acid which my now Gi did and it stops the nausea, and helps other things too. I can't remember if I was on Pred at that time... but just had headaches all the time and I am not a headache person.

Misty, I have a 45 min drive weekly but it gets me outta the cabin fever feeling.. I am glad the shot is available to me and being monitored with blood work is so important. The tablet would probably rot my gut, needles dont bother me and they put it in the butt for a slower release... I don't have a small butt lol...but working on it lol.

Astra thanks for your support too, you are an amazing contributor here, glad you are aboard! :)

I ate Pizza last night and even tho I took 3 digestive enzymes and a antispasmotic... I had painful gas... but I am better now. Did you know you cannot digest black olives???? LOL.
 
Misty-Eyed

Misty-Eyed

haha Pen, my butt is so small I'm surprised the needle didn't hit my bones! lol. I did come over all funny though once which is unlike me. I'm generally fine with needles. I got over that fear long ago! I was all dizzy and needed to sit down for a while.

Glad you are taking the regular blood work though. So important.
 
T

theend2

I hope the methotrexate for you. I tryed it for several months everytime I took it I got sick for 3 days after I took it. I finally realize it was just not working still had mucus and blood.

Ulcerative Colitis 2 years.

40mg prednisone
 
CrohnsHobo

CrohnsHobo

Jettalady said:
I ate Pizza last night and even tho I took 3 digestive enzymes and a antispasmotic... I had painful gas... but I am better now. Did you know you cannot digest black olives???? LOL.
Click to expand...
I loovvee Olives but they always come out looking the way they did when they came in. Especially black olives, not as bad with Kalmata Olives.
 
CrohnsHobo

CrohnsHobo

Last night I tried icing the area where I give myself the injection of Metho for the first time. Actually, made it a little bit easier. Think I will do that from now on.
 
C

Crohn's 35

Inactive Account
Update (shot 2)

Thanks for all your support, you guys are great!

I had my second shot this week, so now every Friday and it was quick and had blood work done for a baseline liver function test and Creatin. I made the mistake of eating (yesterday morning) steel cut oats and I bloated big time and gas... an antispasmotic helped but not sure why but today after my shot went well.. I had bloat, and alot of pain whilst having to do some running around. I came home took a quarter of a Tylenol#3, (probably should of taken a half dose) and it helped. I had bit a of a headache, and an uneasy feeling and my hiatus hernia burned a bit but now I it is settling. Still on 30mg of prednisone and supposed to taper tomorrow, I might wait til Sunday because I dont want to flare.

I had been feeling pretty good but like no rhyme or reason, I flared today :( . I am hoping by next shot next week things will improve. It is the only drug left, so it has to work! Thinking positive though...okay trying to.
 
K

kasper87

I had my 2nd shot last night. I hope it goes well for both of us. So far no side effects at all.

But I don't feel like im improving yet. Still on strong pain meds
 
C

Crohn's 35

Inactive Account
Kasper are you still in alot of pain now? I hope you get relief soon. I think it is just I didnt sleep well, but going to bed now. I wondered if it was cause I stretched it from a Wed to today, wanted Fridays, slower days for them and I was in an out. Are you on anything else besides pain control and Meth? Take care, ok.
 
C

Crohn's 35

Inactive Account
Thanks for bring this post up Kasper,, the site was down all day and still kinda weird things going on. I read that it takes some time for the methotrexate to work so I am gonna taper to 25mg tomorrow, my doc wants a fast taper, but I know if I start to flare it might be too fast. I do have tons of Entocort but my doctor said it wasnt strong enough for my ulcers to heal. I felt nauseated a bit today too, and a slight headache but now seems to be subsiding and gassy with a bit of bloat but not near as much as yesterday...thank goodness!

Kasper it will be interesting to see how Methotrexate does for the both of us, cool we are neck and neck with the shots and similar drugs. Fentanyl is a drug I have never been on, but have had my share of pain meds. ;)
 
C

Crohn's 35

Inactive Account
Today was Shot number 3. Done. The problem is I have been bloated and have gas pains from about 3pm to 8pm everyday and last night my Hiatus Hernia was burning and woke me up out of a dead sleep. Starting to bug me again. Nexium must not be enough. Maalox helps too.

Problem is I am supposed to taper tomorrow to 20mg... if I am suffering now, it is gonna get worse by any means.

Does anyone know how long Meth takes to kick in??? Would appreciate some feed back!

Nyx stop causing so much dust with those pom poms LOL.
 
T

theend2

Hello Jettalady I was on metho for several month and it never worked for me. It made me feel so sick. I hate that drug.
 
C

Crohn's 35

Inactive Account
Yeah I hear ya, I was on it 7 years ago and felt nauseated and headaches but I was also on lots of other drugs too. So hopefully this time it works because it's all I have left. Taking folic acid is really supposed to help with side effects and the shot is in the butt, fattier area... no problem there ;).
 
C

Crohn's 35

Inactive Account
beth said:
IIRC it takes a good 8 to 12 weeks to kick in.
Click to expand...

Not the answer I was looking for! :yfaint:

thanks for letting me know. I was hoping sooner, I was on it 7 years ago but I forgot and didnt finish the course of it at that time.

I appreciate it!
 
C

Crohn's 35

Inactive Account
Thanks Misty..problem is I am suffering with terrible gas and bloat now, same time, same channel everyday... I taper down to 20mg today on Prednisone... like I gotta stick close to home for awhile. Fingers crossed.
 
C

Crohn's 35

Inactive Account
April 2nd. The last few days have been sooo bad... painful gas and bloat. One night only 2 hours sleep and Dingbat told me to drink hot water and go to bed, I did and it helped...thanks Ding ;). Took a sleep aid last night..slept thru but with all the cramps and bloating prior nights and one night sleep it still isn't enough.

I got my 4th shot today, and Beth is right the nurses say about 6 to 8 weeks before some kind of improvement.:( It is said of course everyone is different and said 25mg for 16 weeks is a long time and then 15mg infinity after that and reg blood work.

Just feel foggy today, and was having a depressed moment last night. But I know I have to keep going. Scared of 15mg taper tomorrow. Took 1 flagyl a day to help and it is helping. I hate taking meds but I hate pain more!

You guys are such a help along the way! :wink:
 
Last edited:
C

Crohn's 35

Inactive Account
Thanks Hobo! You are so sweet!

I went to see my Gp for my monthly B12 shot. Told him what has been going on and now on Methotrexate. He has been finding that it was an old drug but he has noticed alot of people being put back on it and doing very well. I never mentioned the prednisone. But last night at 2am the horrendous heartburn woke me up out of a dead sleep. I KNOW it is from the Pred, and I am going down even faster, 10mg cause it really isnt working and I dont need any more complications from it. Hiatus Hernia and robbing my calcium isn't very nice.

Have my 5th shot on Friday the 9th. Problem is I really hope the meth starts to work. It is our 10th year anniversary for meeting the first time and I want to go to the keg... the next few days are gonna tell the story. Thinking positive. I want the KEG lol.
 
Astra

Astra

Moderator
Do you know what?
I've never had heartburn! and been on pred, 40mg, since January, but on 10mg this week, and still no heartburn, strange isn't it?
Everyone!
fingers crossed for me and Pen, we're tapering down to 10mg, we're kicking this Preds arse!
 
C

Crohn's 35

Inactive Account
I dont think I got heartburn the first time I was on Prednisone. Maybe it is repeated offenses lol. I am paying a little but I get that way a few days before my Meth shot. There is always good ol' Flagyl tho lol.

Good luck with your doc appt tomorrow. Let us know what she/he says!
 
K

kasper87

Just did my 5th injection. Still NO side effects. Im a bit jittery today since i went to sleep early in the morning. Didnt eat much.. A lot of sugar and ensure.
 
C

Crohn's 35

Inactive Account
Well my 6th shot was today, feel tired a bit, usually go shopping afterwards but no energy. When I was getting my shot I asked if I was due for my monthly shot and she said wait to see your doctor...umm no it was a standing monthly order here for this lab to do it. So they updated my charts. I asked if they do a liver check and she said yes, and told her under my rib cage I feel a slight discomfort. My LRQ is still acting up, and finished the Prednisone last Tues. Yesterday I developed a rash on the back of my hands and I sorta feel itchy. Pharmacist gave me Aveeno lotion and hydrocortizone cream :yfaint: can't get away from steriods!

I really hope the Metho kicks in soon, because I had to take Flagyl to calm things down.

Kasper: I hope you are doing ok! Your shot was yesterday,,, at least I remembered :smile:
 
K

kasper87

yes ma'am. 6th shot was friday.

I hope it starts to show some improvement soon. I feel like im getting worse.. but than again i think im causing myself to get sick from all the narcotic sluggishness.

i like how mtx works slow though.. no risk for Bowel obstructions from rapid healing/scar tissue like remicade.
 
C

Crohn's 35

Inactive Account
Kasper if you are talking about headaches or nausea I have that now, and it isnt fun and it was the reason I stopped it the last time. I will give it til I see my Gi May 10th. Last night was not fun, major headaches and nausea.


Are you still taking pain meds cause they can cause headaches and nausea if you have been on them a long time. After awhile pain meds cause headaches. What are your symptoms? I still have a bit of LRQ and taking Cipro until that pain stops.
 
K

kasper87

headaches and nausea? None at all..

Im talking about the Crohn's.

Im going to ask and see if prednisone taper for 3 weeks will do
 
5

5 iron

It's going to work and you and the hubby will get alot of golf in this summer FORE!!!! is this drug kinda like Humira?
 
C

Crohn's 35

Inactive Account
Hi 5 iron, where in the heck have you been? I was wondering where you got to.
Methotrexate is one of the older drugs and apparently making a come back, and so far I had my 7th shot just this past Friday and the nausea wasnt near as bad. I am taking a natural Ginger Gravol for that and it seems to help.

I am scared to jinx myself because I haven't had a drug that works in a long time. But...so far it seems to be holding back most of my symptoms. I am hoping with each dose it will get better. Not sure if I injured myself or it is arthritis in my wrist, not good for a golfer. I haven't been out yet but hoping to get into the swing of things LOL. I have been busy doing fund raising and have a couple more to do for the CCFC. I am riding my bike 5km and need sponsers to get this disease in check with a cure or awareness. I am doing low impact exercises and trying to get back in the groove.

Since last Oct I have been fighting alot of things not totally related to Crohn's. I am NOT giving up without a fight!

Fore!!!!!!!!
 
C

Crohn's 35

Inactive Account
That is so sweet, I thank you both Sue and kjhngisd. So far, things are slowly getting better. The support helps me alot. Something everyone needs. Hugs to you both!
 
CrohnsHobo

CrohnsHobo

Glad to hear it is going well Pen.

I have not had an injection in almost two weeks due to a pharmacy/insurance issue. Should get them in the mail today and due one tonight.

Didn't notice any difference in that time. So not sure how much it is helping me between the Humira and Pred.
 
C

Crohn's 35

Inactive Account
Update

Just had 8th shot yesterday and just got over a 4 day major flare. Have D and nausea, and no energy. Not sure Meth is going to help or not, but I see my GI May 10th, day after mothers day. You know when you go to the docs you never feel as bad.. but we discussed a 3rd surgery and feels it isnt warranted because of no narrowing, like I want to wait for that??? :( .

I have headaches and nausea alot after my shot for about 3 days. If I dont do something soon, holiday times come up for my GI and Gp, and both are in retirement stage and cannot get another GP or Gi... need to push on the surgery but I am like the rest of you and really DON'T want to!

Thanks for everyone's support, no one knows what we go through, even tho my husband is my biggest supporter, he still doesn't understand, no one does unless you have Crohns or Colitis. Tired of being in pain or sick and my knee is acting up again. Gonna sign off, sorry for the vent. :(
 
C

Crohn's 35

Inactive Account
9th shot yesterday, I am feeling better, but I ate a few pizza slices even tho I took some digestive enzymes I am paying a bit. Went to physio yesterday for my knee (problems since I was a kid with it and two orthoscopic surgeries) and he says it now can be from meds.. Pred and meth, and lack of use when you are sick and dont feel like exercising, I will pick all of the above ;). Gotta get my knee back in shape, because I dont want surgery on it. So far today no nausea, or headache...knock on wood!
 
ChefShazzy

ChefShazzy

Hey Pen, Hope you're doing well. I just wanted to thank you for telling me about tapering to 15mg of MTX per week. I mentioned it to my GI last week, and he agreed to lower my dose to 15mg/week! Hopefully that will help with the nausea and fatigue I get from the methotrexate doses without getting any other 'symptoms' starting up again.
 
C

Crohn's 35

Inactive Account
Glad to be of service *bows in front of Sharon lol* .

I havent posted here in a while, just not much to say other than I am still flaring from time to time and the nausea and headaches were horrendous last week. So I asked to be changed from Fridays, as the weekends and fundraiser is coming up and I dont want to be sick then. So I changed to Mondays. I told them if I get headaches (which I do now) and nauseated 24/7 I am not going to continue with it. She said to contact your Gi or Gp... both are on holidays and I missed the phone call from the Gi, and my Gp will never change the Gi's reports. So, I just finished 13th shot and not too nauseated now but the headaches just keep on coming. I have 3 more weeks until they taper to 15mg... hope I can make it because if I keep getting flares, it is certainly not worth it.

Hope everyone is doing well.

Pen
 
Aura

Aura

Hi Pen

Aura here
I am supposed to be having my training today to learn to inject myself with methotrexate. But I am away from home on leave for two weeks. I had to cancel and get another appointment. I dont like doing that as I may have to wait a long time for the appointment. I am sure I will have had my first one in the next three weeks with my fingers crossed. Do you go for injections or do you inject yourself?

Cheers
 
C

Crohn's 35

Inactive Account
I wish I could inject myself, funny I had training whilst on Humira but now with the metho I have to go to the Ambulatory clinic once a week (45 min drive... thank God for the Jetta cheap on gas) and they do bp every week too and blood work 1 a month which if very important. Also take 1mg of Folic acid everyday it really makes a difference. I am not afraid of needles or injecting my self, but rules are rules LOL. Let me know when you start ok? Good luck with it.
 
Mountaingem

Mountaingem

Hi Penn,

Has it been your experience that MTX is harder to inject? I had to inject intramuscular for a year and most times it was difficult. My doc wouldn't approve sub-q injections and self administered intramuscular injections where no picnic for me, dear Hubby has to do it for me. Thank God I was recently switched to pills lol!
 
C

Crohn's 35

Inactive Account
Nope, my Gi or Gp wont allow self administered, has to be done by a nurse. I just heard that taking pills are harder on the stomach and I already have a Hiatus hernia, thanks to pred... I dont mind the shots, if they didnt make me sick anyways I would want to stay on it, my next shot is Mondays, switched from Fridays. Just dont feel it is working, too many flares. You?
 
Mountaingem

Mountaingem

I wish US doctors were so careful! I'm glad they have it so a nurse administers it, I'm sure it's much better for the patients.

No unfortunately my experience is that MTX only slightly improved my inflammation and white cell counts, then it kind of caused a rebound effect where my immune system fought back by producing even higher white cell counts and inflammation markers.

Now I'm using Remicade and a lower dose of MTX mostly to prevent building antibodies to the medication, and it's really helping, I'm starting to get out of the flare and into remission after 3 loading doses. YAY! The bad news is my liver is not a happy camper-ALT is above 150.

Isn't this a fun disease GRRR!
 
C

Crohn's 35

Inactive Account
Well... today was a total waste of time!!!! I called the ambulatory clinic at 10am to tell them I am in for my 1pm appt so they can tell the pharmacy to have it ready. I got there half hour, as one told me they dont make up the needle til you get there. Waited an hour!!! So they take my by 130/70 good enough and the nurse said this is the wrong dose! Should be 25mg for 16 weeks this was only 14th. Here I am feeling like crap headache and nauseated and havent even gotten the shot yet! So, I was not impressed. So she called the pharmacy and they said they will send up the 25mg. In the meantime they tell me to go for my blood work whilst I wait. I get to the blood lab and they have nothing! The standing order has to be up dated...well that was IT!

That was an omen for me to high tail outta there and I told the nurse I am sick already, and all this mix up, I dont want this needle any more and it has been 14 weeks and no better than when I started. Sooo, she said call your doctor and let him know.

So I got home, told the Gi's secretary... no more and this is the second time in 7 years and no more and tell my doctor. So that is that, I am sick of being sick and nothing is working.... but bought some Olive leaf extract and gonna try that. My daughter who is going to study medicine was so happy I quit it .... now to tell my husband later. Hope I did the right thing.
 
Astra

Astra

Moderator
Hurrah!

Yes you bloody well did!
Penny, my lovely friend, I have watched you suffer with this shit for nearly 4 months and it was making you really ill, I'm glad too
love ya
xxx
 
C

Crohn's 35

Inactive Account
You sounded exactly like my daughter, she was reading about it and so glad I am off! But surgery could be next, but the waiting times here...too long!

Thanks my friend, you my second soul!
 
C

Crohn's 35

Inactive Account
Well my husband and mother know now that I quit Metho, and my husband said, enough is enough. So now to maybe hear from my doctor... I see my Gp in July so I will talk to him about maybe getting another GI cause the one I got is retiring soon anyways. Back to Flagyl now.:ybatty:
 
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