Confused - questions about meds

After all the reading, questioning, etc. I am still confused about the meds for Crohns! duhh!:duh: I've looked through the various subforums and Wiki but each just deals with the specific medication and, I guess, my confusion stems from the comparison or preference between meds. Stephen's next apptmt is coming up, so I'm just hoping to have a bit more clarity about what I want to ask his GI.

1. Stephen's GI has said that when EN no longer works, he would like to put him on Methotrexate. What exactly is Methotrexate? From what I've read, it doesn't seem to be an immuno-modulator like Azathioprine/Imuran. Nor is it a biologic. In layman's terms, what does it do? Some people seem to think it is an absolute poison but I don't understand why? It's risks/side effects don't seem to be worse than Aza/Imu or biologics???

2. If a bottom up approach is used, would Metho come before Aza/Imuran? Why?

3. Is there a difference between immuno-modulators and immuno-suppressants?

4. If considering biologics, it seems Remicade is often the first choice. Why not Humira or Cimzia? It seems that people have reactions more often to Remicade than the others (but, maybe this is just what I've happened to read???).

5. My aunt has had Crohns for years, as there is a language barrier, I'm not sure exactly which meds she has taken, however, I do know she had a very difficult time in getting her Crohns under control. She currently takes 5mg cortisteroid each day and when a flare occurs, she's up the steroid to 7 or 10 until the flare gets under control. She has done this for 10-15 years and has had no serious side effects up until now. Being given at this low dose, are the risks associated with continued use of steroids worse than the risks of other meds? And can't these risks be better controlled (ie. calcium loss) than some of the risks of the other meds?

I think I have more questions but not even sure what they are??? I feel like I've learned tons and tons about Crohns, meds, etc. but that there are some pieces of the puzzle that aren't coming together.:smile:

Thanks!

Hey, Tess, dear. I hope Dusty will happen along, she always explains it great, but here's what I know:

1. Methotrexate is an old school chemo drug, been around for ages and used for leukemia. Not sure how it is classified as far as what it does to immune system, Kim's girl was on it, maybe she shall advise.

2. Bottom up, V's doc would've gone with 6-mercaptopurine (form of Imuran) but as you know we just went straight to Humira as I didn't want to mess around, I wanted her better fast and 6-mp can take months to work (up to 6, he said).

3. V's doc said he would not give her Remicade (didn't say why) and Humira was offered, not sure why some go w/Remicade first except in the case of fistulizing disease as Remicade is known to work best for that.

4. Your aunt is doing what V and I have actually discussed maybe doing and what my adult neighbor w/Crohn's since age 19 (she's 48) did for YEARS: low dose steroid as maintenance and raise as needed. She said that worked great for her for years; then she did develop a fistula, went to Remicade, that worked great for 5 years, then failed and she started Humira a couple of weeks before Violet. NO results yet from Humira, she said she still feels like crap as does V.

Gosh, Tess, that Stephen is doing well on EN and may for years as V did, don't stress it, he may never need meds God willing. And I'd do naltrexone first as long as no stenosis was in there. :soledance:

Thanks Julie!

Not stressed but because his inflammation hasn't completely gone, I feel like it's just a matter of time before we'll need to consider meds. Hopefully, not for years but I don't want to feel like I did when he was diagnosed and I just had to 'go with it' because I didn't know anything! Just trying to fill in some 'holes' in my understanding... it that 'control' thing of mine! :angry-banghead:

Without even really being aware of all the pros/cons and in addition to all of our shared worries of any med, I'm hesitating on the methotrexate for a very stupid reason - Stephen's going to university next year, I KNOW he wants to go out and party, have fun, etc. :headbang: Drinking is part of that (trust me! I DO NOT encourage drinking :lol:!) but... I want him to be able to enjoy going out with his friends, go clubbing, etc. and not have to worry that he can't have a single beer, that he's restricted by his Crohns. Because of our concerns, my husband and I have already said no to his Grad trip in Dominican Republic, due to lots of Crohn's reasons, I hate the thought of him disappointed again and again. I know issues will come up but, just want to 'shield' him when I can. :blush: Also worried that if on Metho. and knowing the risks, he may still think ' oh, what's one drink?'. I know this is totally stupid, eh? OMG, with so many more important worries relating to Crohns, I'm concerned that Stephen can't go get drunk!!!! Do I look for problems or what?!! Maybe I'm the one who needs a drink! :cheerss:

My plan is to ask his GI to do the LF or calproctin (sp?) test at his next apptmt as a current 'baseline' (he's already scheduled for another MRE in May) along with his usual blood tests and start LDN while he continues on EN. Then, compare results in 1, 2 or 3 months. We have a pretty good idea now of what/how much of the inflammation the EN is controlling and any significant change would, most likely, be due to LDN. I want to know his GIs thoughts on this, etc.

I also feel a bit under pressure to follow-up with the LDN fairly quickly as he will be transferred to a new GI sometime this year. I think his current GI may be willing to go along with me (altho he doesn't have faith in LDN) as there doesn't seem to be any risk in what I'm suggesting but, who knows what his next GI will be like???

So... just trying to get my info straight so that if plan A doesn't work, I understand plan B and C and D and.... Gosh, where is that wine?! utahere:

Julie (and all! )

This is really bothering me - I'm feeling like my post re Stephen's 'drinking' sounds so trivial and selfish, etc. when there are so many other more serious issues here!

Another reason why I'm asking re the meds is that Emily's apptmt with the rheumi is on Monday and, in her case, EN will not be an option as a treatment. I don't know what to think re Emily... she has no symptoms (the sore pinky which started the testing is now fine) but the fact is that her ANA was slightly elevated and she has been anaemic for over a year, even with supplements. I want to believe that, what I see (no symptoms) implies that the test result was just a false positive but, am also too aware that what you 'see' doesn't necessarily mean much!

So, hope I didn't come across as some 'Desperate Housewife' who's only worry is that her baby can't do the pub crawl! :lol:

Aw, hon...:kiss: You're fine, and I totally "get" what you're saying. I AM a housewife, and a desperate one at that so I'll claim that even if you won't.

I didn't know alcohol was prohibited w/MTX...interesting. Wonder what interaction it has if any w/naltrexone?

I know, I wish I had information galore at dx, thank GOD her doc is such a Saint or who knows what would've happened to her. Forewarned is best, so true.

I think your plan sounds stellar, personally. The only thing I'd add is what about a pillcam? Then you'd have irrefutable data on how his small bowel is doing before starting naltrexone. :voodoo: here's my favorite smiley for ya

Hey, I totally get what you are saying- we have discussed the drinking thing quite a few times knowing that my son would likely be put in situations where there would be peer pressure to drink.
It is such a balance between acceptable risks and lifestyle changes vs. managing symptoms. My 16 year old (almost 17 now!) son is currently on methotrexate. He started while doing EN in the fall. His Crohns was quite severe when diagnosed and his GI symptoms were unbearable. At the time we would have done nearly anything to help him feel better and certainly at that time the risks associated with the metho (as well as the idea of lifestyle impact - ie no drinking as long as you are on it, having to do weekly injections...) seemed worth it if it was going to help - I think when you are doing that poorly, it is easier to come to terms with using "stronger" drugs when you would have never thought you'd do it before.
My son has been totally on board with continuing with the metho (thank heavens!) despite having to give himself a shot, not drinking and the possible side effects. BUT, I that is only because he was so sick before and he feels so much better now. I think he knows that this treatment is helping and that he would never want to go back to feeling as bad as he did. He sometimes laments the fact that he can't have a drink at parties, he has not been tempted to (yet?) - I think the fear of ending back up where he was before stops him... if that makes sense.
I'm no expert, but as to your question around metho vs aza/imuran, our GI implied that they were all on the same level but that he found metho quite effective in in maintaining remission in boys (he did not prescribe for girls as it is an anti folate and could cause significant problems if they were to become pregnant). I thought I read somewhere that immuno suppressant and immuno modulator were basically the same thing - just a different name... but I could be wrong!!
I'm sure you'll come to a decision that is comfortable for both of you based on his symptoms when the time comes - you are armed with a ton of knowledge!

Julie - Shall we call you Bree or are you a Gabby? :lol: As far as I know, there isn't an issue with LDN and alcohol. As for the pillcam, I had been thinking of that but am thinking that LF, blood and MRE results should give a fairly decent picture. (That and the fact that I recently read of two members who had the pillcam get stuck and one required surgery! )

S mom - thanks! I agree that, as Stephen did not have severe symptoms, it's a bit harder for him to accept limitations that seem harsher than what he dealt with at diagnosis. But, I'm glad to hear your son has continued to do well. It is tough at this age, lots of changes going on - 'adulthood', graduation, moving to adult GI, etc.! And thanks also for the info re the Metho regarding boys vs. girls. Hope your son continues to do well!!

There is a "patency capsule" they give prior to the pillcam. It's a dissolvable capsule the same size (a tad bigger actually) as the pillcam. If they can pass that, they can pass the pillcam. If there is God forbid stenosis, the patency cap just dissolves. They track it for 24-36hr w/fluoroscopy, unless you pass it and email a photo to the GI as we did.
I don't know if Stephen's disease is in small bowel, but to assess V's after scopes are always normal (every year) he finally this year did an upper GI w/SBFT, and the pillcam. The SBFT shows stenosis too, so if you do that plus the patency cap no worry about the pillcam getting stuck.
Wonder why the two you mentioned didn't have patency cap?? V's doc said he wouldn't give a pt a pillcam without first using it.

Not sure why the patency cap wasn't used?? One member mentioned being told of it 'after the fact', not sure why not before!!

Stephen's crohns was mainly in his TI but there were also areas in his colon, distal ileum and duodenum. The inflammation in these areas had disappeared and/or shrunk in his u/s and MRE in the fall but there was still some left, off hand, not sure what had completely disappeared and what was still present. The GI had mentioned that there had been some thickening when he was diagnosed but had disappeared at his first follow up u/s - unfortunately, so much was still so new at the time, I'm a bit vague as to where, how much, etc.

1. Stephen's GI has said that when EN no longer works, he would like to put him on Methotrexate. What exactly is Methotrexate? From what I've read, it doesn't seem to be an immuno-modulator like Azathioprine/Imuran. Nor is it a biologic. In layman's terms, what does it do? Some people seem to think it is an absolute poison but I don't understand why? It's risks/side effects don't seem to be worse than Aza/Imu or biologics???


In terms of the class of drug Methotrexate is the same as Imuran/6MP and the biologics. They are all immuno-modulators with the difference being how they are actioned. The difference between Methotrexate and Aza/6MP is Metho is both an immuno-modulator and an anti inflammatory plus it is not actioned the same way as Aza/6MP. It can be given either orally or by injection with the injection being more reliably absorbed. Generally Aza/6MP is given in preference to Metho with most docs only going to it when Aza/6MP fail. I can only assume it is due to the potential effects that it has on liver and lungs when used over an extended period of time. Looks like I have already answered 2.

3. Is there a difference between immuno-modulators and immuno-suppressants?

Yes. Immuno-modulators is the overall class. All these drugs, aside from the 5ASA's and antibiotics, alter the immune system in some way, steroids included. Immunosuppressives describes the way that some drugs work. Aza/6MP literally suppress the immune system by dampening down the production of lymphocytes with is why they are used in organ transplantation. The other immune-modulators do not work this way.

4. If considering biologics, it seems Remicade is often the first choice. Why not Humira or Cimzia? It seems that people have reactions more often to Remicade than the others (but, maybe this is just what I've happened to read???).

I don't think Remicade is always the first choice now days. There may be reasons as to why it is prescribed over the other biologics...doctor preference, patient preference or as Juile has said, disease location and complications. Remicade is derived from a mouse protein whereas Humira is completely humanised.

5. My aunt has had Crohns for years, as there is a language barrier, I'm not sure exactly which meds she has taken, however, I do know she had a very difficult time in getting her Crohns under control. She currently takes 5mg cortisteroid each day and when a flare occurs, she's up the steroid to 7 or 10 until the flare gets under control. She has done this for 10-15 years and has had no serious side effects up until now. Being given at this low dose, are the risks associated with continued use of steroids worse than the risks of other meds? And can't these risks be better controlled (ie. calcium loss) than some of the risks of the other meds?

I think the risks with long term steroids, and remember they also affect the immune system, is their effects have the potential to be far more systemic, they can potentially affect most body systems, including eyes, skin and so on and even on low doses you become steroid dependent when used over such a long period of time.

Stephen's going away to university is a very valid reason to question the use of certain medications over others. You aren't being desperate or trivial Tess just realistic and looking out for your boy's back. It can't get better than that!

Please take all I have said about these drugs as my opinion and take on things, I am no expert! :eek2:

I will be travelling today and will be very hit and miss for the next few days so if you happen to ask me something I'm not ignoring you! :lol:

Dusty. xxx

Hahaha, I'm so slow a stack of replies came in while I was doing mine! I did have distractions though! :ylol:

Dusty.

Dusty, can I marry your brain? :rosette1:

Yeah, probably, cause I don't know that is what Mr Kat wants me for! :lol:

Dusty.

i just wanted to add that long term steriod use is horrible for you!! i was on & off them for the most of my childhood (7-15).....steriods was always the fall back clutch when the other meds weren't working. i am only 32 been on remicade for almost 6 months now...my recent bone density test came back as a 3, i have arthritis in my right elbow so back i can hardly move it, my knees have it and the remicade after getting it justs increases the problems. my last dr visit we discussed maybe stopping the remicade as its benefits are no longer outweighing its downfalls, we are still waiting for blood work and MRI results to come back to make that decision. its been rough to say the least. i just read the book why doesnt my doctor know this for IBS IBD crohns & colitis and it was a very good read, i agree with so much he says, would reccommed the book to anyone who suffers from any IBS related issues. dont know so much about the supplements he recommends but i can say without hesitation if you never have had a food allergy test done....GET ONE. it is well worth it!

Dusty - thank you so much for all the info - I really appreciate it!:rosette1: Hope you're going away somewhere fun!:banana: :emot-dance: :banana:

Dragonfly - thanks for all your info. I'm so sorry you're having such a tough time right now! I hope you can move on to something that can truly bring you some relief! :ghug:

Tess,
I am glad Dusty explained it all so well. Caitlyn was on methotrexate for 2 years with no problems. 2 yrs is the max time you can stay on it due to the possible liver affects according to what our doctor said. For Caitlyn it stopped working just prior to the end of those 2 yrs anyway.

Thanks Kim,

Do you know if Aza/Imuran/6mp have the same concerns regarding the liver? I don't 'think' it has, so, if not, I'm wondering why a GI would put a patient on metho. before the others?

Also, was wondering how your little girl is doing? Couldn't find the post regarding her but remember she was having some probelms. Actually, how are both little girls doing - Caitlyn and your smaller one.

Hi Tess,
Aza/6mp/Imuran has possible liver problems on top of all the other possible side effects. I personally had agreed to methotrxate because it is an old drug that has been around for many years and has had many studies on it. Caitlyn had a severe allergic reaction to imuran so was never really on it.
Caitlyn Thank G-d is doing wonderfully!
Sophia I am still worried about but just keeping an eye on her right now. We went to Caitlyn's doctor appt on Monday where I was going to discuss Sophia with him. When we got there we found out that he had cancelled clinic that day one month prior. We had gotten a reminder call about the appt the week before. We were really angry especially since his office is half an hour away and they barely even apologized I am really upset with them right now.

Tesscorm,
Chiming in.. I do not think you are being trivial about your son being able to have a couple of beers in college or that he may be tempted to. I as a parent want this disease to interfere as little as possible in how my son lives his life (and includes the little things along with the big things) If him having a beer with buddies in college is part of that, it would be a bummer that it is one more thing that crohns affects. There are enough things that crohns affects that you have to make tough decisions about for their best interests, like the grad trip. :yfrown: Also, makes sense to anticipate what may occur and be as prepared as possible.

My son is only 10 so we are a way off from there but I hope my boy will be in college toasting the cure of crohns with a big frosty mug. :beerchug:

A study for you Tess:

Comparison between methotrexate and azathioprine in the treatment of chronic active Crohn's disease: a randomised, investigator-blind study.
Ardizzone S, Bollani S, Manzionna G, Imbesi V, Colombo E, Bianchi Porro G.
Source
L. Sacco University Hospital, Via G.B. Grassi 74, 20157 Milan, Italy. gabriele.bianchiporro@unimi.it

Abstract

BACKGROUND AND AIMS:
The efficacy of azathioprine in the treatment of chronic active Crohn's disease is well established. However, this drug has a long onset of action. Methotrexate has also been shown to be effective in chronic active Crohn's disease. The aim of this study was to evaluate the efficacy and safety of methotrexate in comparison with azathioprine, and to establish whether methotrexate has a shorter onset of action in this setting.

METHODS:
Patients with chronic active Crohn's disease were admitted to this investigator-blind study. Chronicity was defined as the need for steroid therapy of > or = 10 mg/day for at least 4 months during the preceding 12 months, with at least one attempt to discontinue treatment. The disease had to be clinically active at entry, with a Crohn's Disease Activity Index of > or = 200. Six patients treated with azathioprine and methotrexate, respectively, were found to have enterocutaneous and perianal fistulas. At entry, all patients received prednisolone (40 mg once a day) which was tapered over a period of 12 weeks unless their clinical condition deteriorated. All patients were randomised to receive i.v. methotrexate 25 mg/week, or oral azathioprine 2 mg/kg per day, for a 6-month follow-up period. After the first 3 months, methotrexate was switched to oral administration maintaining the same dose. The primary efficacy outcome considered was the proportion of patients entering first remission after 3 and 6 months of therapy. Clinical remission was defined as the lack of need for steroid treatment and a Crohn's Disease Activity Index score of < or = 150 points at each scheduled visit.

RESULTS:
In the 54 patients (26 F, 28 M, mean age 34 years, range 18-60) randomly assigned to methotrexate (n=27) or azathioprine (n=27), no statistically significant difference was found between the two treatment regimens with respect to remission rate after 3 (methotrexate 44%, azathioprine 33%, p=0.28, (95% CI, 0.369-0.147), and 6 months (methotrexate 56%, azathioprine 63%, p=0.39, 95% CI, 0.187-0.335), respectively. Six patients withdrew from therapy due to adverse events: 3/27 (11%) in methotrexate and 3/27 (11%) in azathioprine. Drug-related adverse events (asthenia, nausea and vomiting) that did not require withdrawal from therapy were more frequent in the methotrexate group (azathioprine: 2/27 (7%); methotrexate: 12/27 (44%), p=0.00009). The frequency of these adverse events was comparable during the intravenous or oral administration of the drug.

CONCLUSIONS:
This study confirms that methotrexate is effective in inducing remission in patients with chronic active Crohn's disease, therapeutic efficacy being comparable, but not faster, than that of azathioprine.

http://www.ncbi.nlm.nih.gov/pubmed/14563183

Dusty.

OMG, you are too amazing, Dusty!!! :award2:



Thank you! :rosette2: