Methotrexate for inactive Crohn's

[mriguySeattle]

Hi all,

I'm new to the Crohn's forum. After 23 years of living with Ulcerative Colitis (the last decade in complete remission) and taking Asacol every day, I am happy to say I just had a colonoscopy and for the first time my colon is completely free of inflammation.

However, I have ulcers in the terminal ileum and a few inches of bowel wall thickening (seen on a CT in March). This was evident on my colonoscopy in 2009 but to a lesser extent. Prior to that the only other time they looked in the terminal ileum was in 2000. So I have had this condition in my terminal ileum for at least 7 years, maybe longer.

But, I have no GI symptoms. No pain, bleeding, or irregular bowel habits. However, I have developed arthralgia in both hands (for almost 2 years now) and had a recent bout of episcleritis in my right eye. Both are possible complications with Crohn's I've discovered.

So my Gastro thinks that my colitis has evolved into Crohn's and now wants to treat it. He wants me to continue the Asacol since it has worked well in my colon but is not designed to treat the small intestine. I tried mercaptopurine years ago when I was having trouble controlling my colitis and got pancreatitis so that drug is off the table.

So he is suggesting oral Methotrexate. To be honest, I don't like what I've read about the possible side effects of this drug. It seems a little drastic to me to start it since I have no GI symptoms.

Does anyone have a similar history? I'm curious if Methotrexate is the only option I have or if there are other traditional or alternative treatments.

Thanks for reading.

 

[ronroush7]

Welcome. I don't have any personal experience with this drug but I am sure others will come along who have.

 

[eleanor_rigby]

There has been a lot of talk from forum members recently who are not having symptoms so they don't want to take medication, yet active disease has been shown on testing.

If active inflammation is seen in your small bowel, not doing anything about that will often mean the disease could progress to cause any/all of:
- Perforations
- Strictures
- Fistulas
- Obstructions

All of these things will often require surgery and effectively become a ticking time bomb. Surgery is risky. We only have so much small bowel they can take as we need the small bowel to live so taking risks with the small bowel is really not a good idea.

I have a large scar from above my belly button down. I too, had very few symtoms for years - never diarrhoea, blood, constipation or any issues with my BMs. I got occasional stomach cramps. This caused me to go undiagnosed until one day I got a perforation in my small bowel that resulted in an emergency resection during open surgery.

It seems quite common that people don't actually get symptoms of ileal Crohn's. It's also quite common for this area not to show up in tests besides colonoscopy (for example my CT scan, blood work and fecal calproctectin results are essentially all normal when I had extremely active disease in my ileum on my colonoscopy). However, no symptoms does not mean the disease isn't doing irreversible and permanent damage to your small bowel - and that is the key point!

You are between a rock and a hard place - take the drugs and risk the side effects - or don't take the drugs and risk the progression of untreated Crohn's disease of the small bowel. After my horrendous experience, I'll never take the latter risk.

 

[Scipio]

How about inducing remission with Entocort and maintaining it with Imuran? That seems to me to be a reasonable approach that some docs take for asymptomatic ileal Crohn's. Those drugs have side effects (all drugs do) but it's not quite as drastic a step as methotrexate. Seems like methotrexate often gets tried after Imuran has failed.

 

[eleanor_rigby]

How about inducing remission with Entocort and maintaining it with Imuran? That seems to me to be a reasonable approach that some docs take for asymptomatic ileal Crohn's. Those drugs have side effects (all drugs do) but it's not quite as drastic a step as methotrexate. Seems like methotrexate often gets tried after Imuran has failed.

The GI may be hesitant to try imuran after 6mp caused pancreatis. However, some people fail one of these drugs but not the other, so this my be worth a try as Scipio has said. It's the drug I am currently taking.

 

[Scipio]

The GI may be hesitant to try imuran after 6mp caused pancreatis. However, some people fail one of these drugs but not the other, so this my be worth a try as Scipio has said. It's the drug I am currently taking.

You're right. I missed the part about 6mp. So I guess methotrexate makes a little more sense.

 

[my little penguin]

For Ds his EIM's ( arthritus hands episcleritis skin lesions etc) are far worse than what is seen on his scopes
The good news is Mtx is used a lot for peripheral arthritis so it should less the issues in your hands ( have you seen a Rheumo - spondyloarthritis does not test postive in the blood or cause swelling but is common with IBD - tagging maya142)
http://www.spondylitis.org/Learn-About-Spondylitis/Enteropathic-Arthritis
Mtx has been used for years at low dose ( similar to crohns dose ) in juvenile arthritis without any issues . The majority of issues are from high doses used for chemo or other diseases.

Ds has been on it for 3 years no real issues other than mouth ulcers
He takes folate 1mg x2 day every day to stop those

Good luck

 

[mriguySeattle]

Thanks all for the feedback, much appreciated. My GI is proposing 20 mg methotrexate orally once a week. Does this seem reasonable?

 

[my little penguin]

You can go up to 25 mg injectable a week of Mtx
Less is absorbed orally so the oral dose varies
Fwiw Ds takes 17.5 mg of Mtx orally in addition to humira 40mg every 5 days

Some folks do better with oral and some with injection
Ds got sick on injectable Mtx but only mouth ulcers on oral Mtx provided he takes folate instead of folic acid
Good luck

 

[mriguySeattle]

Thanks. Due to the pancreatitis caused by 6MP, my Gastro says trying Imuran is too risky. I certainly don't want to risk ending up in the hospital again with severe abdominal pain. He wants to try 20mg oral Methotrexate weekly and 1mg folate daily.

I believe I'd need blood work every 3 months to check for liver status and then a colonoscopy in a year to recheck terminal ileum.

Questions for you all: Is Methotrexate effective in reducing the swelling and healing the ulcers in the terminal ileum? That is my main concern, I don't want it to get worse.

Is it realistic to expect the swelling and ulcers to disappear in one year? And if they do, can I stop the Methotrexate or do I have to keep taking it, and for how long?

I realize these are things my gastro can probably answer but I'd like to hear form people that have taken the drug to get a better idea of what to expect. Thanks.

Mike

 

[my little penguin]

Typically it's a maintence med which means you take it as long as it works or you develop side effects that are not acceptable .
Without meds the disease isn't kept in check and comes back quickly
As far as whether it will lead to remission -- it's hit or miss
Some meds work fantastic for some and not so well for others
It's really trial and error
Wishing you the best

 

[JLL from SC]

Good advice by several members here regarding not disregarding evidence of asymtomatic Ileal Crohns. More than 40 years ago I had a significant bowel bleed with no other symptoms, that required a transfusion of 4 units of blood. The state-of-the-art equipment at that time was a rigid scope which showed a disease free descending colin. So when the bleeding stopped and my hemoglobin stablized I was released. Fifteen years later I presented with an anal fistula which was corrected by surgery. In the meantime (over the 40 year period) and thereafter I had annual complete physical exams with nothing found other that one small polyp which was removed during a colonoscopy. During this whole 40 year period I had no other symptoms of large or small bowel distress. Then about 18 months ago, I began to feel that something was amiss, experiencing irregular BM's and bloating which I reported to my GI during a regularly scheduled 5 year colonoscopy appointment. To my and his surprise he reported that he had been able to get a look into the Ileal section of the small bowel and found a considerable amount of inflammation and scaring. After early treatment with Budesonide and Apriso during which my condition continued to worsen, I recently began treatment with Humira.

Throughout the whole nearly 40 year period the disease had apparently been silently (and likely intermittenly) attacking my small intestine.

 

[hcrum87hc]

With the ulcers and bowel thickening, you definitely want to get on some form of treatment. As others have said, this WILL cause issues down the road, even if it's not causing symptoms now. I'd see about getting on a steroid for now to induce remission, and then phase in the MTX to stay in remission.

 

[mriguySeattle]

Thanks all for the input. I realize now that I need to take some action. I appreciate the help.

 

[mriguySeattle]

If I start taking methotrexate now, would any side effects occur after the first dose or do they typically take several weeks to manifest ? I ask because I have a 3 week vacation planned starting sept 15 and I don't want to deal with issues while on vacation. Should I wait to start the drug until my return on October 4?

 

[mriguySeattle]

Hi all. it's been many years since my last posting on this site. Here's an update:

After all your great insight and doctor consultation, I eventually started Entyvio and after 2 years, and no improvement, I switched to Stelara. Stelara seemed to stabilize things but there was still no improvement in the extent of TI inflammation, even though my symptoms were quite mild or non-existent (my only symptoms have been hand and ankle cramping during the night, and abdominal cramping during the night. Both issues resolved once I started ambulating in the morning).

In May of 2023 I adopted a planted-based whole foods diet hoping I could improve things organically but after a CT scan in December 2023 it showed worsening inflammation and for the first time, upstream bowel dilation. There is also a considerable amount of scarring that my doc says is irreversible. He thinks I should consider surgery (which would remove my IC valve and a portion of the terminal ileum) while I am still healthy and would have an easier recovery.

Naturally, surgery worries me as I fear that the adjacent portion of small bowel could eventually be affected causing a domino effect with more surgeries. Is this still a concern with modern surgical advancements?

In December 2023 I also started feeling lower right quadrant pain for the first time ever. I have been on a course of budesonide and while it took a couple weeks to have any effect, all the abdominal cramping eventually went away. However, since I started tapering the dose, the cramps have unfortunately returned. I also take Turmeric and Miralax daily.

I'm not sure what to do now. Perhaps I try Remicade?? I have not yet tried an anti-TNF inhibitor, such as Remicade. I really want to avoid surgery, as I doubt things will ever again be "normal" post-surgery.

I welcome your feedback! Thanks.

 

[Entchen]

Hiya: I’m sorry you are going through the wringer. Yes to the chance of a domino effect, but it sounds like the risk:benefit ratio favours that over the risks from living with the scarring and bowel dilation. You may be at increased risk of a blockage (ask me how I know ), especially with your ongoing inflammation likely to make the problem worse. Surgery may help a little or a lot, for a short time or for several years, but there may not be a viable alternative. Take good care!

 

[mriguySeattle]

Thanks Entchen for the reply.

Yes, please tell me about your blockage and what meds you were on prior to your blockage and what special diet, if any, you were following. Thanks.

I saw in another post that you just had a resection? I hope you are recovering well.

 

[Entchen]

Appreciate the well wishes. It’s a bit up & down, but more up than down in the last couple of weeks and I have been able to do some socializing and a LOT of walking (although, disclosure, today sucks—feels like active Crohn’s all over again ). I’m going to ease back into work starting on Tuesday.

So prior to the blockage I had just completed the Entyvio loading doses, following clear failure of Humira. I was on sabbatical and taking a couple of months to travel across the country (Canada). Spent a month in the Maritimes, Montreal, and Toronto, and then less than a day into a Via Rail journey from Toronto to Vacouver—boom. I started throwing up. Intense pain. I thought it was the worst stomach flu ever, made worse still by the rocking of the train. (Seriously. Don’t get a bowel obstruction on a TRAIN plodding its way across a large country through regions with no cell service.) I threw up no fewer than 65 times in 24 hours.

One challenge I have is that when I am sick my clear thinking goes out the window. I did not flag it as an obstruction (esp. because I did have a little coming out—likely what was already below the blocked region), and I did not clue in to hop off the train in Winnipeg and go to a hospital. Once I was feeling slightly better (still throwing up, still severe pain, but more clear-headed), I texted friends to help me reconfigure the trip plans. We decided I would get off the train in Edmonton, where I slept at a friend’s house for a few days then flew home.

After that, a friend and I had about 2 more weeks of travel planned, around BC. I felt fine overall, except I kept falling asleep—in taxis, at the pool, you name it. By the next month it was clear to my GI doc (ahem, not to me) that things were going downhill. Enter colonoscopy, evidence of severe active inflammation, stricturing.

Switched to Skyrizi. CT scan showed a fibrotic stricture but no active inflammation—win. Scheduled surgery for the stricture (ileocecal resection). Went dramatically downhill before surgery, but again, I am slow to catch on so I didn’t call the surgeon to move the date forward.

Now with a history of stricturing and internal fistula as well as the perianal disease the odds that the inflammation returns within 3 years are quite high—but—we will be keeping a close eye on things to intervene right away. I will practice calling the doctor sooner rather than later (one hopes). Next colonoscopy will be in June or July. And I’ll stay on Skyrizi for now because sometimes after surgery you get a bit of a “reset” on failed medications (which at this point is all of them, except Rinvoq, which is brand new to Canada and we have not discussed my potential eligibility).

Diet: Low fibre. It got more and more restricted as surgery neared because eating caused so much pain and so many problems, but I started playing it safe as soon as I was advised by my GI that I was likely having repeated obstructive symptoms (this was before the CT scan). Did not want to chance another blockage!

Thanks Entchen for the reply.

Yes, please tell me about your blockage and what meds you were on prior to your blockage and what special diet, if any, you were following. Thanks.

I saw in another post that you just had a resection? I hope you are recovering well.

 

[mriguySeattle]

Wow, that is quite a story, thanks for sharing.

Were there any warning signs prior to the vomiting episode on the train? Were there any tell-tail symptoms that you now know were indicative of an impending blockage?

 

[Entchen]

Wow, that is quite a story, thanks for sharing.

Were there any warning signs prior to the vomiting episode on the train? Were there any tell-tail symptoms that you now know were indicative of an impending blockage?

No, not a single one! I am clearly bad at deciding when something is an emergency, but I do monitor my symptoms and there was nothing at all.

I do hope you are taking your time thinking about the risks and benefits of surgery, though. And remember that meeting with a surgeon does not mean you have to go through with it. That said, now, about six-weeks post-surgery, for the first time I understand why some people say they are so glad they had it! Things really are improving for the better. Even if the benefits are short-term, I’m glad to have done it.

 

[mriguySeattle]

Hi all, quick update...still on Stelara injections every 8 weeks, and got a Stelara infusion last Spring (in addition to the injections) and did another round of budesonide. All this led to a much improved CT scan and colonoscopy in June. So now my doc is no longer suggesting a distal ileum resection and wants to continue to monitor. I continue to follow a largely plant-based diet (with fish and eggs) and avoid inflammatory foods and also avoid hi-fiber foods after 4pm (so they hopefully won't pass through the distal ileum while I'm sleeping and cause disruption).

Now three months later the RLQ pain has returned. I fear that the positive CT scan and colonoscopy this past June were aided by all the additional meds and that my condition is starting to revert back to how it was in December 2023.

So I'm back on another round of budesonide. And the ankle arthralgia at night is incredibly bothersome.

Has anyone discovered a topical cream that can be applied at bedtime to alleviate the ankle pain?

Thanks as always for your input.