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Posted 7/26/2017 6:21 AM (GMT 0)
Hi all,

I've been on imuran for about 1 year and a half now. While on imuran, I've had a few flares here and there (More accurately about 3), nothing too major that I've had to use pred. But my doc has been taking note of how imuran hasn't been able to completely keep me from flaring and is suggesting that I switch over to methotrexate.

CRP as a inflammatory marker has been a rather accurate test for me and the most recent test that I took (literally yesterday) showed that I had CRP levels of 13.3 (I think normal levels should be below 9.1) Previously, my tests done earlier this May and last December showed good levels below 5.5.

I'm scheduled to meet her again in 1 month's time and will have to do a stool calprotectin test. If the levels are high for this test, she'd definitely want me to switch away from imuran to methotrexate.

Currently, I'm experiencing mild cramps but other than that, I have 3-4 BMs daily, sometimes with light streaks of blood but no mucus.

My question is, having browsed this forum for abit, I think fellow UC-ers feel that 6MP works better than methotrexate.

1. How much of a difference will I feel on 6MP instead of imuran, or even as compared to methotrexate?
2. If I go off imuran, will I ever be able to go back on it or will biologics be the next thing for me if 6MP/methotrexate does not work? (The cost is something I don't want to think about)

I'm currently on 4g asacol daily, 125mg imuran daily, vitamin D tablets, VSL #3 once daily (doc wants me to up it to twice daily), mesalamine enemas once nightly (Doc wants me to up it to twice nightly).

She mentioned that a UC sufferer would be allowed to go off immunomodulators if they've been in complete remission for 4-5 years and I'm really aiming for that. But it seems that for now, I've got to grapple with the idea of changing medications and even escalating to biologics sad

Post Edited (UCdude) : 7/26/2017 12:29:42 AM (GMT-6)

Posted 7/26/2017 7:54 AM (GMT 0)
I'm going to comment on your cost concern for biologics. I have no experience with methotrexate or imuran. The doc that started me on remicade skipped that tier of medication and I never asked him why. All of the biologics offer financial assistance. Prior to Obamacare, cost was not an issue because my insurance covered most of it and my financial responsibility was nominal. After Obamacare, my responsibility turned into 10% of the total cost which meant I had to come up with $700 each infusion until my deductible was met. I have an excellent job but I couldn't afford to do that. I signed up for Remistart which gives me $20,000 per year to apply toward my remicade expenses. I simply submit my EOB to them and they put the money on a debit card and that's how I pay the $700. You have probably heard that biologics cost $20,000+ per treatment. The hospital I use bills them about $17,000 and my insurance company pays them an agreed upon $7,000.

I realize you're not ready for biologics but don't let cost be a deterrent if you end up needing them. I have a friend that lost her insurance coverage for a few months. She called the biologic company and they paid for her treatments until she was back in business with insurance.
Posted 7/26/2017 11:31 AM (GMT 0)
Hi platinumpixie,

I'm not sure of how things work in my country as I'm not from the States and would have to consult my insurance company first. One concern I can raise off the top of my head is that my insurance does not seem to cover regular medication (they do cover +- 3 months worth of medication whenever there is a hospitalisation) and I'm not sure if biologics classifies under regular medication?

With regards to your comment that I'm not ready for biologics, did you mean in terms of my disease progression or psychologically?

Thanks!
Posted 7/27/2017 6:11 AM (GMT 0)
Ah, I didn't think to ask your location. Normally I can pick up cues in the writing but I didn't with your post. My apologies for assuming. I'm not sure if the financial assistance programs are available outside of the U.S.

My comment about you not being ready for biologics was psychologically. I waited 6-12 months after my doc recommended it because I wasn't mentally ready. I knew it was time for remicade when my flares became more frequent and prednisone wasn't working as quickly as it had in the past.
Posted 7/27/2017 12:18 PM (GMT 0)
No worries! It's partially my fault too for not clarifying it in my initial post. Just curious, will you be affected by Trump's efforts to repeal Obamacare?

Ah.. were you already on imuran/6MP/methotrexate back then when the flares became more frequent?

For me, I've not had to go on pred during the time that I've been on imuran. I've had flares but they tended come when I've had periods of stress (exam period, internship stress etc.) and go away thereafter (I also use colifoam during this period and it seems to do the trick). So I'm not sure if I require biologics at this stage! I think my doc is definitely thinking of swapping around immunomodulators for the time being.

I'm not 100% sure of how the medical treatment of UC progresses, are immunomodulators meant to keep me in solid remission or are mild-moderate flares acceptable once in a while due to stress?

Thanks!
Posted 7/27/2017 12:24 PM (GMT 0)
See my inline responses below.

UCdude said...

1. How much of a difference will I feel on 6MP instead of imuran, or even as compared to methotrexate? They're very, very similar meds and I doubt you'd notice much, if any of a difference between them. Infact imuran actually metabolizes into 6MP within our bodies. Getting 6MP pills just saves our bodies a step, gets you a lower dose and smaller pill. Usually people switch to MTX due to intolerances/reactions to imuran/6mp. MTX is a bit different than the others and its affect on UC patients is poorly studied, therefore seldom prescribed for uc. It should work with UC but there's scant evidence to back that asertion up.

2. If I go off imuran, will I ever be able to go back on it Yes,
you can stop or start 6mp/imuran at will, just mind that it takes 3 months to have an effect from these very, very slow acting 6mp/imuran type drugs. or will biologics be the next thing for me if 6MP/methotrexate does not work? (The cost is something I don't want to think about) Yes, biologic cost is insane, $4,000 to $10,000 USD per dose. Certainly check into your insurance coverage and out of pocket costs before starting.

Biologics are the next step if you cannot achieve a remission on immunomodulators.


I'm not 100% sure of how the medical treatment of UC progresses, are immunomodulators meant to keep me in solid remission or are mild-moderate flares acceptable once in a while due to stress? Yes immunomodulators are often an ongoing maintenance treatment for UC. If your UC is well controlled with an appropriate maintenance treatment then you should stay in a remission (an absence of UC symptoms) for a long time, 2, 3, 5, 8 or more years without a flareup. A deep/quiescent/histological remission is the best case scenario, where there are no signs of active inflammation even from a biopsy, and that gives you the best odds of having a very long remission. Your UC isn't well managed very well if you are flaring on a frequency of less than a year. It often takes a lot more medications to achieve a remission than to sustain it, so it is quite common to reduce what medications you take once you are in a solid remission. Sometimes they can eliminate immunomodulators, other times not.

No UC medication can prevent you from flaring, we all do flare eventually (except for our j-pouch friends).
However, when your UC is well managed, your flares are much less frequent, much shorter, and much easier to rebound from.

All new classes of UC medications are initially quite scary to almost everyone. I've been on biologics and immunomodulators now for 3 years and I haven't had a side effect yet from either. I have found a remission from biologics though. It's a lot to wrap your head around and come to terms with. I found it helpful to look at the actual odds of side effects versus benefits of biologics. about 65 percent of UC patients improve their symptoms on biologics, and less than 1 percent experience serious side effects. The benefits far outweigh the risks. The Crohn's and Colitis Foundation of America is the source for these statistics:
Webcast: programs.rmei.com/CCFA139VL/presentation/player.html
Transcript: http://www.ccfa.org/assets/pdfs/risk-and-benefits-transcript.pdf


Posted 7/29/2017 5:34 AM (GMT 0)
Hi iPoop,

I never knew about the connection between 6MP and imuran! So would it actually be more effective since our body saves a step in breaking it down? I think I'd discuss swapping over to 6MP with my doc first then!

Yeah cost is really a big issue when it comes to biologics. I think my doctor doesn't think that I need it at the moment but it could definitely be a possibility if i can't keep the flares from coming back every now and then.

I actually had a really good quiet year for 2016 but had a minor flare that I thought was exacerbated by a scope in the midst of it. My target is to hopefully stay on immunomodulators and achieve a good 3-5 years of remission and then hopefully reduce my meds!

So when you're on biologics, you stay on immunomodulators too? Would your immune system be compromised even further with so many meds in your system?

Thanks for the really detailed reply nonetheless!
Posted 7/29/2017 12:05 PM (GMT 0)
I'm skeptical that switching between medications within the same class will do much of anything. Certainly ask your doctor.

Yes, often it's recommended to be on both immunomodulators and biologics simultaneously, as their combined affect is greater than their individual affect. Really that's true of all UC treatment, seldom is a single medication all that you need, rather you get much, much better results from multiple meds taken together.

No issues for me on being on immunomodulators and biologics simultaneously. Not sicker than usual, I'm not a germaphobe, nor do i wear a plastic bubble lol. I just live normally without worrying. Even with immunosuppression you have a fully functioning immune system, it's just taken down a few pegs. The only time that matters is when your body responds to a flu/cold or infection as your immune system is slower and less forceful in it's response. A cold/flu might last a day or two longer and the symptoms onset quicker and the worst symptoms last a little longer than your norm (hits early, lasts a little longer, and is a little more intense). Everyday cuts and bruises are of no concern regarding infections. It's the type of infections that always require antibiotics that I'm referencing, same as colds/flus it hits hard and early, and seek antibiotics sooner if you suspect you have such an infection. For example a UTI, bronchitis, sinus infection, etc. In the worstcase scenario, left untreated those infections can spread throughout the body, become blood-born as a serious sepsis type scenario. Nothing is without risk, odds are low of it happening, just good to be aware, vigilant, and seek treatment early for suspected infections, rather than wait another week to try and shake it off yourself. That's true of the imuran you're on now, as well.
Posted 8/1/2017 1:55 AM (GMT 0)
Oh? That thought did not cross my mind to be honest. Now it really changes things. If I'm not going to be responding to imuran perfectly, then I have to be on biologics + immunomodulators next?

I'm actually feeling much better after going on 2 VSL #3 tabs nightly and increasing my dosage of mesalamine enemas to 2 bot nightly. If the calprotectin test turns out good in 7 weeks' time, my doc might have a change of heart again!

How about living with dogs/animals?

I'm really frustrated with antibiotics because I feel that my condition might have been a result of prolonged usage of antibiotics during my teenage years and everytime I take antibiotics, it puts me at a risk of flaring up again bc of the diarrhea.

Thanks for the advice once again! I've really learnt alot since joining this forum smile
Posted 8/1/2017 2:29 AM (GMT 0)
Hi I was on Methotrexate for a while and it worked well for my UC but ironically it didnt work for my spondyloarthritis too well. Its worth a shot as you just take the drugs weekly and of course if cost is a concern its super cheap.
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