Methotrexate..

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.

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.

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

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 =]

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. :)

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

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

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