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Crohn's Disease Forum » Treatment » Methotrexate » Methotrexate - last resort?


 
11-06-2012, 12:48 PM   #1
Anna90
 
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Methotrexate - last resort?

So far I have tried Azothiprine and Remicade with no effect.

My GI now wants me to increase my steriods back up to 40mg, have been on 20mg or above since June this year and start Methotrexate.

I haven't heard much positive about Methotrexate especially compared to Aza which did nothing for me. Has it worked for anyone who had no luck with Aza or Remicade?

Also, I'm starting to worry what happens if this doesn't work either as I know you cannot be on steriods long term?

What options would be left? Are there just some people who nothing works for?

Also, with the Methotrexate is there anything I should be concerned about/ should know about before starting it? As there doesn't seem to be as much info on it as alot of the other drugs..

Thanks in advance
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Diagnosed June 2012 with Crohns

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Pred 40mg
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Infliximab- first infusion 8/10/12
11-07-2012, 08:01 PM   #2
David
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I think it's worth trying even if nothing else has worked for you. As I'm a big fan of hitting the disease from all angles, here's some additional ideas you may want to ponder and discuss with your doctor if you like the sound of them:

- Western Medicine - Try the Methotrexate.
- Dietary changes - Enteral/elemental nutrition, paleo diet, or specific carbohydrate diet. Juicing is also growing on me a lot.
- Hydration - Dehydration and loss of electrolytes is common. Proper hydration and adding electrolytes back in can help you a lot.
- Alternative treatments - I'm a fan of Low Dose Naltrexone. Two studies in adults have had great results (see the stuck thread in when following that link) and there are very few side effects. It's also not very expensive. Medical marijuana has been shown to help a lot as well if that's something you're comfortable with and is legally available in your area.
- Stress reduction. Do whatever it takes to reduce your stress levels. In addition, a weekly or even monthly massage if funds are tight is great. Studies have actually shown that massage can reduce inflammation. Give yourself self-massages as often as possible in between the professional ones.
- Exercise if you're able - a gentle yoga is a good one
- Vitamins and minerals - find out which you're deficient in and properly supplement. People with Crohn's disease are commonly deficient in vitamin B12, vitamin D, folate, and magnesium as well as a host of others. But those four first ones should definitely be checked. DO NOT blindly supplement, treat these as medications and get your levels tested FIRST.
- Supplements - there are a variety that help improve overall health. Check our our diet/fitness/supplements forum for ideas. I'm personally a big fan of tumeric (curcumin) and strongly suggest utilizing it.
- Alternative medicine - This could be stuff like acupuncture, including a naturopath in your treatment team, etc.

Bring your doctor in on the conversation for all of this. Get their input and let them help supervise your disease state. Some doctors might need a little push on some of this stuff, but we can provide studies that showcase the efficacy of all the above.
11-09-2012, 06:09 PM   #3
orangeleprechaun28
 
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Unfortunately, I don't know enough about this to post a response. However, I just wanted to post so this is moved back to the top for you. I hope someone can help provide some answers for you.
11-09-2012, 06:57 PM   #4
KayleighMeek
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Hello,
Before starting methotrexate I had been on Pentasa, aza, 6mp, remicade and humira I don't have much succes with medicines as I am allergic to most. I was very nervous about methotrexate it I have now been on it for a year and I am still doing reasonably well having a few issues with arthritis but have just had a new drug added to hopefully help with that.
Have you spoken to your GI about what you would do if this didn't work I have spoken to my GI about either trials or surgery if this failed so I still have some plans if this didnt work.

When I first started methotrexate I felt awful but wih increasing my folic acid I really improved. This is the one thing to keep an eye on and if you do feel sick tell them so they can adjust your medication. If you have any more questions I would be happy to try and answer them for you if I can. Hope your doing well x
11-09-2012, 07:10 PM   #5
KWalker
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I've taken methotrexate both orally and through injections in the leg. I did injections for about 2 years and you can play connect the dots on my leg. I wish I would have known earlier and I would have tried to make it look cool or something lol.

Anyways, for me, oral pills were terrible. My doctor actually warned me that I wouldn't feel well on the day of/day after so to take them on Saturday morning. He was right. I had so many wasted weekends because I felt too sick to do anything.

When I switched to the injections we upped the dose. I didn't get the sick side effects like I did from taking the pills because it skips the digestion period. The main side effect I ever remember from the injections were side effects which I just took Tylenol,Advil, etc for and it went away. Now that its been awhile since I haven't been on metho. I can't remember how much success I had but there must have been a reason for me to stay on it for as long as I did. Just don't get pregnant or even try while taking it. It can cause some serious problems
11-09-2012, 07:18 PM   #6
Clash
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My son takes the pill form of methotrexate, 25mg every week. We just added it as he is already on Remicade. He has had for doses of the MTX so far and we take it on Friday. He hasn't had any side effects but it could just be because we just started. The GI also prescribed daily folic acid, which he said could help with the side effects.

I hope you are able to find a medication that will help you achieve remission soon!
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Clash
Mom to
C age 19
dx March 2012 CD

CURRENT MEDS: MTX injections, Stelara


Dx May 2014: JSpA
8/2014 ileocecectomy
9/2017 G tube

PAST MEDS: remicade, oral mtx, humira
11-09-2012, 07:38 PM   #7
KWalker
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Clash, I hope your son gets lucky with no side effects. For me, it was immediately after the 1st pill. I would get really sick and then just as the side effects were going away it would be time to take the next pill. Maybe your son will avoid that if he hasn't felt anything yet. We all know everyone is different with crohns though
11-09-2012, 07:42 PM   #8
my little penguin
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DS took Mtx by injection for 8 weeks .
He had fail 6-mp/ allopurinol at the point and pentasa.
For him it did not help his EIM 's which kept getting worse and we had to move on to remicade.
He was tired the day after the shot sometimes a lot other times not at all.
Good luck
Definitely worth a try.
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11-09-2012, 07:57 PM   #9
Clash
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KWalker, thanks. I really hope he continues to have no side effects but still feel like I am in the wait and see mode? So far so good, but we will see. The GI did mention switching to the injection if the pills gave him severe flu like symptoms or nausea.
11-09-2012, 08:11 PM   #10
KWalker
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That's what it felt like for me. Nausea, throwing up, feeling week, lack of appetite, etc. When I switched to injections I did the injections myself in the top of the leg. Its a pretty small needle and there were only a few times that it actually hurt me because I did it wrong or was hesitant so I took my time pushing it in rather than stabbing it in there lol.

I kinda freaked me out because once you push the medicine in you can see the medicine pushing the skin up but it goes away immediately
11-09-2012, 08:21 PM   #11
Clash
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Blech...I so hope he can stick with the pills. I could give him the shots, I think, if we had to but goodness knows he is 16 so I'm sure no matter I will be doing it wrong! LOL So strange I seemed to be brilliant when he was 8! Ah...the teenage years + chronic illness what a volatile mixture!

How is your abscess troubles going? I hope you are able to find something to get them under control. Did the antibiotics help at all? Did they make you nauseated? C is allergic to penecillin and it seems alot of antibiotics med make him extremely nauseated. He isn't in need of taking one at the moment but I worry if the need arises about compliancy because his nausea gets so bad.
11-09-2012, 08:47 PM   #12
KWalker
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The shots are super easy, I promise. I had a huge fear of needles (and still somewhat do) but it was taking the methotrexate injections and doing it myself that helped me with that fear. It was by far the easiest/least painful needle I've ever taken. I just used to set the tip on the skin and then push and I think it made things worse so eventually I just started making it one motion and just forced it right now without thinking about it. There's lots of fat/muscle on the top of the leg so just pinch the skin and go for it lol.

As far as my abscesses, thanks for asking. I'm doing fairly well. The original one is still draining and actually quite a messy looking scar lol and the new one on the other side is doing okay. It seems like it has good days and bad where some days I don't have any drainage and other days I get quite a bit. I'm currently waiting on a doctors appointment to talk about treatment for it but as of now they're technically untreated. I took Cipro and Flagyl quite a bit actually and they were effective while I was on them but the effects wear off after you stop taking the 10 day course. Luckily for me I'm not allergic to penecillon because both my brothers are
11-09-2012, 08:53 PM   #13
Clash
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I saw where your doc mixed up the referral, I know that has to be frustrating! I do hope you are able to get the abscesses under control soon. And thanks for all the information. It is good to see someone your age taking control of your illness, gives all us Moms hope that our sons can successfully be their own health advocate when they are on their own!!!
11-09-2012, 09:30 PM   #14
KWalker
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yes it was very frustrating! Especially because I'm extremely busy with school right now so to find time to even go to a doctor and then to realize it was time wasted really made me mad. They're supposed to be finding me another referral but as of now I have no idea when that will be before I can get in to see the doctor. And thanks I'm not doing anything that any other person can do, we just have to be strong and dedicated enough to keep pushing and we can make it through anything!
11-17-2012, 04:14 PM   #15
Cpushard89
 
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Today I seem to be having a hard time motivating myself to take the humira and the methotrexate =/ this will be my 3rd injection of methotrexate. 1/week.. and I've been back on humira since august now. Though i was pleasantly surprised at how little the metotrexate needle hurt. the humira Pen Sucks as far as pain goes because there is no control over either the rate it stabs you or the rate at which the fluid is pushed into you. So.. im not looking forward to the humira shot.. the methotrexate i was so afraid of it hurting.. i just placed the needle against my skin and applied pressure then i realized that the needle was in and i slowly pushed the medication and didnt feel it. For me it was more anxiety than anything.
11-21-2012, 04:59 PM   #16
KWalker
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Cpushard89- Hey, if you look at your syringes for the methotrexate the tip should look something like this --> =/ (pretends the lines line up to each end). The tip itself be on a small angle rather than looking like a pin. Does that make sense? I noticed for me if I did the injection in the same way that the needle went it didn't hurt as much because it seemed to be more gradual. Also, if it works for you and your comfortable with your method of placing it on your skin and then pushing stick to it, but for me it was easier just to push and go right through the skin in one motion. I found that I wasn't thinking about it as much by doing that.

I always had a silly fear that the needle would snap and get stuck under my skin but I don't know if that would ever actually happen lol
11-21-2012, 05:07 PM   #17
nolsen311
 
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I've switched to pre-filled syringes of Humira for precisely that reason. I've got a high pain threshold, but even so the syringes are less uncomfortable.

I've also been off methotrexate for a while now... Luckily it's not permanent.
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11-21-2012, 05:15 PM   #18
KWalker
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Are you talking about the epi-pen style nolsen311? I remember doing those stupid pre-filled humira pens and have of them shotting across the room because I've already clicked it and it hurt too much to hold in. I wasted a lot of money/medicine with humira lol
11-21-2012, 05:53 PM   #19
nolsen311
 
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No, I use pre-filled "normal" syringes. They hurt less and help fulfill my OCD need for control.

2
11-21-2012, 05:55 PM   #20
KWalker
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oh, interesting, I didn't know the syringes came pre-filled like that. That's a good idea
11-21-2012, 06:36 PM   #21
nolsen311
 
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After trying them I suggested to my doctor (and my aunt who's a GI nurse) that they let people know about this. Obviously if you have an issue with needles it's not ideal, but I think they definitely hurt less.

As always: YMMV.

2
11-21-2012, 08:05 PM   #22
KWalker
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Ah okay, yeah I don't have a problem with syringes at all but HATE the humira pens
11-25-2012, 04:32 PM   #23
ron50
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Hi all.
I am new to the forums. I am a colon ca survivor. I used methotrexate off and on for a couple of years. I hated it because it reminds me so much of the cancer chemo 5fu but it worked well for me . I was taking it for auto-immune problems,psoriatic arthritis and an unknown auto problem causing protein-urea(I was losing up to 3 grams of protein thru my kidneys,.015 grams a day is baseline allowable). I took 25 mg a week. It wrecked my stomach so I split the dose to bi-weekly. It helped a little. Eventually I went to self injections,I use the old type one shot insulin syringes. The meth ampoules are self sealing and can be used up till empty. I did suffer nausea for two days after and on those days I took megafol and was given a script for leucovorin if it got too bad. In the end the diahorreah got too bad and i went off meth. I still have the diahorreah a year later and suspect it is caused by after effects of gall bladder surgery. I am treating it now with questran lite. If it works I will go back on meth as it dropped my protein loss to .075 grams a day. Meth does have some nasty side effects . It makes you seriously sun sensitive so cover up when using it and get a yearly skin check done. I had not had a sun ca removed up till meth. Then I had what the doc thought was a basal cell carc cut out of my face. It looked strange so he took extra margins . lucky for me as it was a micro nodular basal cell ,one of the few forms of basal cell ca v considered invasive as it invades the deep nerves. Fortunately he got clear margins. You need to have regular bloods done on meth to check for liver problems. Good luck Ron.
11-25-2012, 04:48 PM   #24
KWalker
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Wow ron50, it seems like you've had quite the experiences! Throughout the whole time of me taking meth I never had my blood checked and everyone gives warnings that we need too, so I guess I dodged a bullet there!

Methotrexate itself is a type of chemotherapy used for cancer, but in lower doses so maybe that is why you found it similar to the 5fu.

Welcome to the forums!
11-26-2012, 02:37 AM   #25
ron50
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Thanks KW,
My liver results were a little out of wack on meth but my nephrologist does things by the book. My rheumatologist had me on arava and he was supposed to do bloods every couple of weeks ,
. He did the first lot then did not worry for three months . I was starting to feel really crappy so I dropped by his clinic and asked the receptionist if i should be having regular bloods. She came back with the path request ,I had the tests and two days later got a call to stop the arava immediately. I thought it was like other rheum and neuropathy drugs and I would have to taper but no ,stop now. It took nearly six months for my liver functions to come back to normal. I seem to have some trouble with drug reactions. I was on 75 mg daily of prednisone for nearly 18 mos. It took nearly three months to taper off it . Not only did it cause me a massive flare of psoriatic arthritis it put me into type two diabetes. I thought chemo was bad till I hit the auto-immune drugs . They are not nice... Ron.
11-26-2012, 12:33 PM   #26
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Im glad that im not the only one who hates the humira pen!!!
11-26-2012, 12:41 PM   #27
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As I mentioned, I've got a high pain threshold... I can't usually feel the grinding in my guts. But I find the Humira pen very uncomfortable.

I encourage everyone using Humira regularly to at least try it since I've found such a difference.

--Nate
11-27-2012, 07:12 PM   #28
Scaryman
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My first dosage of Humira, were on the syringes. I'm 12-14 I start the pan. And not looking forward to it based on what people are saying its painful. I wonder if we can give feedback to Abbott labs on this if it will make a difference?
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Diagnosed 2003
5-ASA- failed
Imuran-failed with a strange reaction-paralysis
Remicade- failed with infusion reaction.
Mesalamine-another failure
Entecourt - fail- no help.
currently on Methotrexate 25mg and Humira combo.
Folic Acid Supplement
Hyclosomine,Ultram,vicoden for pain as needed
Extended right Hemocolectomy 5/24/13 Univ.Of Chicago
11/7/13- small crohns ulcer at surgical site (active).
11-27-2012, 07:49 PM   #29
nolsen311
 
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Don't let it get you down, it's a much more convenient method of administering the drug. Out of curiosity, why did you switch to the pens? If you find it painful, you might request a switch to syringes. From what I understand the cost is the same so it's just a matter of asking your doctor for your preferred method.

--Nate
11-27-2012, 08:50 PM   #30
Scaryman
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Nate, it wasn't much of a choice of mine. I'm on the patient assistance program from Abbott labs so I get what they give me and deal with it. At least that's my thought process on it. I'm just happy to get the drug.
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