Methotrexate..

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UCfree_at17
Regular Member


Date Joined May 2008
Total Posts : 91
   Posted 5/31/2008 8:06 AM (GMT -6)   
Hello all. Im a 16 year old who just recently got diagnosed with UC about three months ago. Still getting used to what I can and cant eat, what hurts my stomach, all that fun stuff..Right now Im taking 15 mg of Prednisone, took my third Remicade treatment about two weeks ago, take 1 mg of Folic Acid, a multivitamin, and an iron pill daily. The Remicade didnt work for as long as my doctor had wanted it to and the day of my last Remicade treatment he started me on the Methotrexate shot. Im taking 25 mg of that and got my third shot yesterday. I noticed that last night around 3 am I woke up being extremely nauseated.I thought that maybe it would get better so I tried sleeping it off but when I woke up this morning I still feel horrible! A girl that I work with said it makes her sick for a couple of days afterwards. I never noticed feeling this bad the first two times I got the shot. Is this normal? Anyone else experienced this with the shot? Like I said, Im new to having UC so any advice would be much appreciated  
                                                 Thank you :-)

jujub
Elite Member


Date Joined Mar 2003
Total Posts : 10407
   Posted 5/31/2008 8:24 AM (GMT -6)   
Welcome to HealingWell. I'm so sorry you have this condition, but glad you're looking for support.

I've never taken Methotrexate, but I hope someone who has will respond for you. If not, you may want to ask this question on the Arthritis forum also, as a lot more people with arthritis do take Methotrexate.
Judy
 
Moderate to severe left-sided UC (21 cm) diagnosed 2001.
Asacol, Rowasa, Pentasa, Prednisone, Entocort, Azathioprine
Avascular necrosis in both shoulders is my "forever" gift from steroid therapy.
Colazal,  Remicade, Nature's Way Primadophilus Reuteri. In remission since April, 2006.
 
Co-Moderator UC Forum
Please remember to consult your health care provider when making health-related decisions.


nhmas
Regular Member


Date Joined Feb 2005
Total Posts : 44
   Posted 5/31/2008 9:23 AM (GMT -6)   

For the first 3 weeks I was on Methotrexate, I felt really tired for a couple days afterwards, but no nausea. I do my shots at night, once a week. I am not on Remicade. The NP that taught me how to give myself the shots said nausea was a possibility and to let them know if that happened and they would prescribe Zofran.  You may want to call your GI and inquire about it.   

Mary

 


kim123
Veteran Member


Date Joined Jul 2006
Total Posts : 1201
   Posted 5/31/2008 10:28 AM (GMT -6)   
Well, I can't tell you how sorry I am that you have been diagnosed with UC. You have found the best place for support and advice, let me tell you.

As I read your posting, I was wondering about your condition and just how bad it must be for your doctor to prescribe such strong drugs with potentially harmful side effects, especially since you are newly diagnosed and probably haven't tried a lot of other less harmful. (if there is such a thing) drugs. Having never been on any of those drugs, I can't suggest any advice to help with your side effects, but I'm wondering out loud to all of you out there with UC...are these drugs a natural first approach to treating a patient "newly diagnosed" with UC, or does it really depend on how severe the disease is ?

UC_at 16, did your doctor give you a diet plan that might help your symptoms? For me, that would be the first thing I would ask for, along with the drugs he prescribed. (Knowing already the answer to that question, if you want more info on that, look into the Specific Carbohydrate Diet, or anti-fungal diet). Keep your doctor informed of your diet changes! You may wish to ask him about using natural anti-fungals, as well. It is not a coincidence that many people who have eliminated certain foods from their diet find their symptoms improve, some dramatically enough that all their symptoms disappear. That is because there can be a fungal/yeast issue with UC. (If you have ever been on any antibiotics in your life, this could be the issue for you). It may be worth looking into, especially since you are so young, and you probably don't want to be taking these drugs for the rest of your life, if you can find other natural ways to get well.

Good luck. Let us know how you make out.

UCfree_at17
Regular Member


Date Joined May 2008
Total Posts : 91
   Posted 5/31/2008 11:53 AM (GMT -6)   
Kim,
I havent really talked much with my doctor. He usually talks to my parents either on the phone or out of the room away from me, which I must say I HATE =[ I think the reason he started me on such strong drugs was because he said hes been doing his job for 30 years and my case of UC is one of the worst hes ever seen..scary! He said there was no diet for UC, just eat what doesnt hurt my stomach and stay away from what does..I dont eat any dairy products, i tend to stay away from all meats except for steak, turkey, and grilled chicken. I drink organic or lactaid milk. Im not aloud to eat nuts,popcorn, or chips. Hopefully this methotrexate is worth the side effects
Thank you all for everything =]
Katrina
 
Severe UC, newly diagnosed
  Currently taking 15mg Prednisone,1mg Folic Acid,
25mg shot Methotrexate once/week,iron pill and multivitamin daily
 
 


kim123
Veteran Member


Date Joined Jul 2006
Total Posts : 1201
   Posted 5/31/2008 4:16 PM (GMT -6)   

Katrina,

Some people find their condition improves eliminating all grains, especially wheat, corn and corn product andprocessed sugar for awhile, as well. Are you also trying to avoid foods with yeast? It's up to you, but if you are suffering as bad as you indicate, it may be worth to experiment for a few weeks to see if you don't improve. The next 2 weeks will still go by whether you decide to try it or not. That is really the only way to find out for sure. My myriad of doctors told me changing my diet would not make a difference...'just stay away from the things that "seemed" to bother me,' they told me.  Well, after 8 years of being miserable and trying so many different drugs, I learned on my own that UC can have a fungal etiology, and that those who followed an antifungal diet often got well again. Against the "wisdom" of my doctors, I experimented with it (nothing I was doing was helping me get well again...what did I have to lose?) and within 2 weeks was significantly better. Today I still follow a maintenance program as I don't want to get those symptoms back again. Grains and sugar feed the fungus. I now eat grains in moderation and try to limit my intake of processed foods, especially the sugar. Sorry if I seem so passionate about this, but it kills me when I read stories like yours and the only thing a doctor does is write a prescription as you're going out the door. Did he even ask you if you ever took antibiotics or been exposed to a moldy/mildewy environment? Probably not. Doctors don't learn anything about fungus in medical school, only bacteria and viruses. Has anyone suggested probiotics to you? That is something else I would consider. There are also natural antifungals out there, if you wish to go that route. As always, consult your doctor before you make any changes, but the diet and probiotics should not be a problem. I'll be thinking of you. Hope you feel better soon. Stay in touch.

Kim


nsg121
Regular Member


Date Joined Dec 2006
Total Posts : 31
   Posted 5/31/2008 5:02 PM (GMT -6)   
Hey Katrina,
 
   I was on methotrexate for about 4 months this past year, I can say that it did help me a little bit but not as much as my doctor and I wanted so I switched to 6-MP and its been working well for me.  When I was on methotrexate, I would take the injection at night and yes I did have nausea for the first couple of weeks, i would say 5 weeks to be exact.  I actually threw up once because of it but eventually it subsided.  Let me know if you have any questions on it?
 
Best,
 
Nsg121

Indeterminate IBD - 2003

Medications:  6-MP 25mg


UCfree_at17
Regular Member


Date Joined May 2008
Total Posts : 91
   Posted 5/31/2008 7:11 PM (GMT -6)   
Kim,
Your the second person to recommend that I try an antifungal diet. What exactly is that..never heard of it before.Well I never heard of my disease until I found out I had it. Im up for trying anything right now. The more I read these forums about long term use of Prednisone the more Im scared to continue use of it. All these ppl are talking about how it led to them having bone problems. Im 16 and way too young to be getting replacements.
=[ Im going to look into an antifungal diet and see if that helps. With all the medications Ive tried so far, nothing has stopped the D and thats what we're trying to achieve. Thank you for the recommendation. Ill deff look into it.

NSG121,
What I found wierd was that with the first two injections of Methotrexate, I didnt get sick at all, just really tired. But with this last one yesterday I got really sick around 3 am and hoping maybe I could sleep it off didnt happen. Did you have the D when taking Methotrexate? And if so, did it stop it or change it at all? Thank you for the info and ill be sure if i have any ? about the shot to ask =]
Katrina
 
Severe UC, newly diagnosed
  Currently taking 15mg Prednisone,1mg Folic Acid,
25mg shot Methotrexate once/week,iron pill and multivitamin daily
 
 


kim123
Veteran Member


Date Joined Jul 2006
Total Posts : 1201
   Posted 5/31/2008 7:58 PM (GMT -6)   
Katrina,

You can read more about fungus from the following website where I learned much of my information. It is: www.knowthecause.com . Look under the FAQ section for the diet, as well as the research implicating fungus and our health problems.

Incidentally, I just found this research today:

http://www.ncbi.nlm.nih.gov/pubmed/17203803


There is also a TV link where you can watch his daily health show that also has good info provided on fungus, etc. You can also email me if you want more info or details on the diet, but it is pretty well explained there. I say give it a shot. But, if you are experiencing UC symptoms as bad as you say, it may take more than 2 weeks to see dramatic results. It is hard to follow, especially if you are addicted to bread, starches and sugar (another indication you may have a fungal problem, by the way). But, if you know that it may just be the thing that helps you feel better, it will be worth it. In fact, it is really eating foods you should be eating all the time anyway..meat, poultry, fish, most veggies, berries,..... Let me know what you decide after you check out the website. I'm sure there are other anti-fungal diets that are similar, but this diet has been tried and proven for a number of years for people with our condition. There are no guarantees, but I guess you have to ask yourself whether it is worth it to at least try it. You must be very strict with the diet to begin, or you won't know for sure. Best to you.........
Kim

julee70
Regular Member


Date Joined Oct 2007
Total Posts : 486
   Posted 5/31/2008 8:16 PM (GMT -6)   
Hi Katrina,
I'm glad you found the forum and are asking questions. That's a really good way to learn more about this disease and figure out what works for you. As you probably already know from this forum, everyone is different and responds differently to drugs, food, stress... everything!

Like Kim, I was surprised that you were started on Remicade right off the bat. One usual progression is for doctors to put patients on sulfasalazine first. It's the most benign of all the drugs. (It's the one that really is the safest to use for a long time.) A lot of people are allergic to sulfa, which is maybe why some doctors skip it. The next drug that doctors usually try is Asacol or something in the same family. (These are the 5-ASA drugs that we all talk about endlessly: Colazal is the other really popular one.) These are also pretty safe drugs that you can take a while without risk.

Once someone has not responded to those, then the doctors bring out the bigger drugs, so to speak. I'm on 6-MP which modulates the immune system. The idea is that the body is attacking itself and this drug will try to keep that from happening. It has some cancer risks (pretty low, actually) and it can mess with your liver so you have to get your blood checked every month in the beginning and then every 3 months. I consider Remicade in this "bigger drugs" second step.

15 mg of Prednisone is actually not that much. I used to start at 40 mg and then reduce it over a few months. Prednisone is used to get things under control quickly while other drugs have a chance to kick in.

So-- if you don't mind this suggestion, I think that if you hate when your doctor discusses your health with your parents and without you, you should say something. You're the patient and you have a right to information about your condition. Is it helpful to know if your case is particularly bad? No. That part the doctor can leave out. But it would be helpful to know why the doctor is jumping to these particular drugs. Just knowing the plan and reasoning is always nice.

I'm sure that your doctor knows an awful lot with all those years of experience. I'm sure that he's also seen a lot of patients and is used to being asked questions. So he should realize that you just want to understand what is going on.

about diet: diet changes have never helped for me. I would do whatever you feel like experimenting with and see how it goes. If you find that worrying about your diet (trying not to eat certain things, etc.) is adding to your stress, then I would broaden what you eat. Just paying attention to what you eat and whether it makes a difference to how you feel is a helpful start!

Please keep us posted on how things are going. You have a lot of company here. :)
-------
UC for the last ten years
Current Meds: 6MP since 2006, Cortifoam
Past Meds: You name it; I've tried it. (Asacol, Colazol, Pentasa, DiPentum, Rowasa, Canasa, Cortenema, sulfasalazine)
5ASA drugs don't work for me. Canasa seems to make me worse.
Alternative treatments I have had success with: Acupuncture, Hypnotherapy


bookworm21
Veteran Member


Date Joined Mar 2008
Total Posts : 1766
   Posted 5/31/2008 8:46 PM (GMT -6)   
Hi Katrina,
I'm sorry you had to join us and that you're not feeling so great! I've never tried Methotrexate, but I also think it's a bit weird that your GI hasn't put you on one of the traditional 5-ASA meds. Maybe you can ask you GI about that since many people use 5-ASA meds as maintainence in remission and part of the treatment during a flare.

I agree with julee70--you should say something to your parents and/or doctor about letting you listen in on what the doctor is saying. I understand that they may not want younger children or even teens to hear everything, but you're 16 so you're going to understand everything more and are more mature. Anyway, when you're 18, the doctor is only going to talk to you and you'll have to give him/her special permission to talk with your parents. So might as well start now!

You might want to try and keep a food diary. It may give you an idea of what makes your symptoms worse. I kept one for a few weeks and found that food doesn't really matter for me.

HealingWell is an awesome place and we'll help in w/e we can!
Female, Age 19, Dx w/ UC August 2007
Seasonal allergies
9 Asacol/day, 1000 mg Canasa, Proctofoam, Rifaximin 2/day
Digestive Advantage (Crohn's & Colitis) 3 pills/day, 1 Florastor/day
1 DanActive/day


nsg121
Regular Member


Date Joined Dec 2006
Total Posts : 31
   Posted 6/1/2008 12:56 AM (GMT -6)   
Katrina,
 
  I did in fact hat D with it and it usually happened right after the dose, I would say within 2 hours I would have a BM.  But it was a small price to pay since afterward that BM I would start feeling better.  The D didn't stop for me, there were times it didnt affect me but majority of the time I would have to go.  My blood work came back normal, so everything was fine.  Hopefully methotrexate works better for you then it did for me, let me know if you've got anymore questions or concerns.
 
Best,
 
Nsg121

Indeterminate IBD - 2003

Medications:  6-MP 25mg


Rot Gut
Regular Member


Date Joined Jun 2006
Total Posts : 63
   Posted 6/1/2008 5:39 AM (GMT -6)   
Hi,

There's a thread that has been running since February over in the Arthritis group. It does have relevance for you though as it discusses MTX in depth.

BEST of luck and hey - tell the 'rents you're out of diapers and are ready to be part of the solution. You WANT to be in there when your doctor speaks about your condition and best course of treatment.

I do take MTX but not without climbing from azulfadine on up the ladder. You MAY be SPECIAL. There MAY be a real reason why MTX is being introduced early. I've researched endlessly all my options.

SO GLAD you found the friends in Healing Well. They speak from experience.

Here's the link for the Methotrexate discussions.

http://www.healingwell.com/community/default.aspx?f=10&m=1043483

Have a really nice Sunday!

Rot Gut
Left Side UC diagnosed in 1988 while pregnant with twins
Colazal, Aciphex, Rowasa, Canasa for the UC
Celebrex, injectable Methotrexate and Folic Acid for Colitic Arthropathy

Rot Gut is newly certified as a MICROSOFT Professional.
Will that be for here or to go?


MMMNAVY
Veteran Member


Date Joined Jul 2006
Total Posts : 6927
   Posted 6/1/2008 10:28 AM (GMT -6)   
UC_at16,
While I have CD not UC I do take MTX shots (because I puke the oral med) and love them. It has been the only thing that worked for me. Tried remi..got lupus, sulfer meds, immuran, several different other ones and found that I could not take oral meds -vomit comet. Started with mtx shots, have some vomiting but nothing like it was. Zofran meltaways work best for my vomiting. Hope it helps.
Navy
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...


UCfree_at17
Regular Member


Date Joined May 2008
Total Posts : 91
   Posted 6/1/2008 5:35 PM (GMT -6)   
Thanks to everyone for all the lovely advice. My mom told me that the reason my doctor started me out on those meds was because I had constant D my BMs havent been solid or even close for about a year now and other meds wouldnt have time to begin working because i would just poop them out =/ Thats why im taking the shot of MTX instead of pill form. I got my shot Friday and am sad to report that I STILL feel horrible. I went to work today..Kmart cashier and even though i just stand there looking pretty and ring up ppl for 4 hours i was scared that i would pass out or something. I got enough sleep..maybe its not from the MTX shot. I started to get a sore throat three days ago so maybe im just feeling like this bc im trying to get sick?
Kim, I looked up the antifungal diet. It basically says I can only eat meat and veggies..does that sound right? No bread at all. No pop. I was going to try to stop eating meat for a couple of weeks to see if that helped anything but then i havent the slightest clue what i would eat lol id end up starving! so that idea is out. For a while i was addicted to pizza so i ate a lot of that but the other night i ate it and it made my acid reflux act up REALLLY bad. so i dont eat that anymore haha but it was only bc i waited til 10 30 pm to eat it...oppsie.
Thank you all again for the advice. I love how I can come on here and tell you all how Im feeling and you ACTUALLY UNDERSTAND. None of my loved ones know what im going through so it can be hard to explain without sounding like a whine baby constantly complaining about how i dont feel good.
God Bless
Katrina
 
Severe UC, newly diagnosed
  Currently taking 15mg Prednisone,1mg Folic Acid,
25mg shot Methotrexate once/week,iron pill and multivitamin daily
 
 


kim123
Veteran Member


Date Joined Jul 2006
Total Posts : 1201
   Posted 6/1/2008 6:25 PM (GMT -6)   

Katrina- Don't stop eating meat!! Which diet were you looking at? On the antifungal diet you can eat virtually all meats, fish, poultry,(non breaded, of course), all veggies except potatoes, mushrooms (a fungus) and corn/corn products (a grain). Absolutely no grains for 2 weeks! Sorry, no bread, but after awhile, believe it or not, you won't even miss it. Also you can eat the following fruits if your body can tolerate it: grapefruit, lemons, limes, all berries (blueberries, strawberries, raspberries, etc), green apples, any eggs, yogurt (only plain,full fat-  not the low fat and non-fat because they usually have fillers and artificial sweeteners), butter, and sparingly unsweetened whipped cream, cream cheese and sour cream (those 3 sparingly), olive oil, raw nuts (no peanuts or pistachios). After 2 weeks I introduced some grains like oats, brown rice, millet no-yeast bread, tortilla bread (no yeast). I used Stevia to sweeten anything like the whipped cream or yogurt with fresh/frozen berries added. I also made a legal cheesecake with an almond base sweetened with Stevia with crushed berry sauce on top for a treat. It is only hard initially because you have to prepare ahead of time. You can't open a box or can of something on the run. Will you be home during the summer to give it a try? It may be easier than trying to do this while going to school. As well, if you do have a fungal condition, you may feel worse (flu-like symptoms) before you feel better as the fungus dies off. You would want to be home for that. May last up to 4-5 days. Everyone is different. Did you ask about the probiotics?

I'm sure hoping something will work for you soon, whether it's the meds or the diet change, or whatever it is you and your doctor decide to try. Give it time. You won't get better overnight. And don't give up. You'll find something that works for you, eventually :)

 

Kim


bb224
Regular Member


Date Joined Jun 2008
Total Posts : 33
   Posted 6/5/2008 1:25 PM (GMT -6)   
I also get the methotrexate shot once a day, And yea for a couple days afterwards I get a upset stomach, Dizzy and a little nauseous but it usually goes away around day 3 after the shot :-/ Keep in mind to the shot can take up to six weeks to fully kick in to.
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