Jan Dollar posted:

Glad to hear things are looking good for you CT. I am soon starting on Remicade too, as Cimzia just wasn't doing it for me.

Jan,

Me too, Cimzia would work great for 3 or 4 days and then it would gradually wear off in about 14 days and then I'd have to wait 2 more weeks for my next monthly dose.  I kept hoping that Cimzia would build up in my body and become more effective for me over time but it's been 6 months now without much improvement.

I've already taken Remicade, Humira, Simponi and Cimzia for my UC so I'm limited on my options.   Next is either Entyvio or Stelara.

Out of all the biologicals Remicade was definitely the best for me; I think that is the case with most UC patients.  Some CD patients do very well on Humira. 

Jan-

Good luck with Remicade. I kind of had the sense that Remicade was working from the beginning because my nighttime incontinence and leakage had become fairly frequent before I went on Remicade. I haven't had a single episode of night time incontinence since I started Remicade. I also had the general sense that my pouch function was better.

One important thing I forgot to mention in my prior posts. My Doc, in addition to jacking up my Remicade dosage and prescribing Methotrexate to be taken with the Remicade, also gave me a prescription for Folic Acid. He explained to me that it somehow works with the Methotrexate but I forgot exactly what he said. It enhances it somehow. Up until now, I was just taking Remicade with nothing else, mainly because he didn't know if it would work and was leery about overly suppressing my immune system so soon after thyroid cancer treatment/radioactive iodine. But we are now almost 6 months out from the cancer treatment and he is seeing demonstrable progress from Remicade, so he feels like we can ratchet things up a bit.

My next infusion with the new regimen is scheduled for March 9.

Good luck to all on bios. I've been doing great on Entyvio. Hope I get a few years till the next drug of the moment comes along, lol. 

AK- that is great news and your comments as well as some others here about Entyvio give me great encouragement if and when the Remicade ever stops working. My Doc has already told me Entyvio is next in line as treatment if and when that ever happens.

One other thing I forgot to mention that my Doctor told me. He said that when I am on the Remicade - Methotraxate - Folic Acid combination, which will be starting within the next two weeks, I will have to seriously limit my alcohol consumption. He said no more than two drinks per week. I am not a heavy drinker anyway, but occasionally I like to imbibe, mostly on Friday nights/weekends.

He also said I will have to go for monthly blood tests and he gave me some lab work he ordered for when I do this. 

So I decided I am going to go out for drinks tonight while I still can. I had plans to go to a sports bar anyway tonight to watch the UConn basketball game, but now I have several reasons to order a few drinks, while I still can. Tito's Handmade Vodka, a gluten free concoction made from corn, with orange juice, seems to be my drink of choice these days. I like the taste more than the gluten free qualities, but I will take a healthy vodka that also tastes good any day. And I will drink a toast to all of us who are on biologics. As AK said there are newer ones on the market all the time, and hopefully if one stops working, there will be perpetual new ones to take every couple years.

Folic acid reduces the side effects from methotrexate. These are mostly the GI effects and mouth sores.

http://www.arthritis.org/livin...ate-side-effects.php

Jan

Jan-

You have refreshed my memory about what my Doc said about taking Folic Acid with Methotextrate. He mentioned possible nausea/GI issues but not the mouth sores. He also recommended Zofran, an anti-nausea med, but I told him a scrip wasn't necessary because that is what they gave me when I had radioactive iodine for thyroid cancer, so I had an unused stash at home. He told me to pop a Zofran the morning I start Methotextrate - preemptively. Same as what did when I took the radioactive iodine. And take it with food.

hi I have another question. my pouchitis is from fap. I am again on cipro/flagly and feel somewhat better. less pain pills for sure..but my worst problem now is I am extremely constipated. I have a dr apt soon but this in itself causes major discomfort  what to do??

palm,

Cipro and flagyl do tend to constipate.  Drink lots of fluids and consume a bit of natural fiber.  That should keep things running regularly. You can also consider things like prune juice and other natural laxatives to loosen things up.  Avoid taking other things that will add to the constipation- like pain pills which are themselves very constipating.

Concerning folic acid. FYI, and this might not apply. Some of us carry the methyl folate gene that prevents us from metabolizing folic acid. I am a double and so is my son. We need to take a special form called l-methylfolate. It is a simple test mouth swap. For me it prevents my Lexapro from not working. 

Rebe suggested I post the fact that when I saw Dr Shen recently he noted my pouch was 20% better than before the hyperbaric oxygen treatments. I personally did not feel or sees my change but thought this was important.  I recall ct barrister mentioning he decided to go on biologics because his scopes were worst even though he didn't actually see or feel a change. Perhaps this might be an option before someone starts biologics. 

Clousea-

I have not discussed the hyperbaric oxygen treatments with my doctor and I am not sure if they are offered in my area or covered by my insurance, but that could be an option for some people before starting biologics.

You touched on an important point, which is that my scope results last June 2015 had gotten significantly worse without me actually feeling much worse.  This suggested that the antibiotics were only treating my symptoms, and not the inflammation in my J pouch.  I think that this is one of the reasons my doctor felt it very important to scope me 3 months after we started Remicade.  I have felt that my pouch function improved since we started a low dose of Remicade (the most important difference I noted was the complete cessation of night-time incontinence).  But now we will be increasing the dosage and he will scope me again in June.

You mentioned 20% improvement on your inflammation.  Mine with Remicade, at a very low dosage, and with respect to the cuffitis and areas of inflammation in the pouch, was closer to 100%.  The swath of inflammation in the ileum above the pouch is tougher, perhaps in part due to the fact that this area is getting bombarded with backwash stool due to the lack of a backsplash valve at the J Pouch inlet.  The mechanics of my pouch are such that this may always be an issue to some extent, but my GI doc thinks a higher dosage of Remicade will treat it.

I do worry a little bit about how the blood tests will come back after starting this cocktail of Remicade at a higher dosage, Methotrexate and Folic Acid.  In the past, the only biologic I ever took was Imuran, back in the early 1990s, and I had to stop it within weeks due to it making my liver chemistries go haywire.

I realize a similar result could happen now, so the more possible treatment options that exist out there, the better.  I will look into feasibility and insurance coverage on hyperbaric oxygen treatment.

So yesterday I had my first Remicade infusion with the new increased dosage. My first 3 infusions were 400 mg each total, this based on my body weight. Yesterday I was increased to 900 mg, which is actually over double the prior dosage.

Although the nurse advised me that most patients report feeling "wiped out" later in the day of a Remicade infusion, I have not experienced this with any of my 4 infusions. I got my infusion yesterday 8-10 am, then went to work, and when I got home from work at 5:30 pm I went for a 45 minute walk on the beach to take advantage of the mild temperatures here in Coastal Connecticut. I felt great all day.

One slightly concerning piece of news is that the results of my March 2 blood test came back and my liver chemistries were determined to be slightly high. This test was done after I started Methotrexate but before yesterday's new increased Remicade dosing. Here are the lab results:

bilirubin total: 1.8 (normal 0.2-1.2 mg/DL)

bilirubin direct 0.3  (normal <OR =0.3 mg/DL)

bilirubin indirect 1.5 (normal 0.2-1.2 mg/DL)

Jan or any lab techies or geeks- they are telling me these numbers are on the high side but not worrisome. At what point do the numbers become worrisome? In the past they put me on Imuran (back in the 1990s) and my liver chemistries skyrocketed and I am worried the same thing will happen.

CT, there's not a specific number that requires action. The major risk with mildly elevated levels is forgetting to monitor them going forward, which can reveal worrisome trends or levels. You appear to be at zero risk for forgetting about this, since in your case there's an attentive doctor and an attentive patient. I'd probably check them again in 6-8 weeks, but your doctor might prefer a different interval.

Scott, my doctor wants it checked every 4 weeks and I am allready scheduled to go for another blood test on April 1. So I will stay on top of it but wondering what will happen if it goes up some more.

If your liver enzymes, ALT and AST, are OK, I would not worry about this. Your direct bilirubin is normal and the other elevations are very slight. This could easily be just some hemolysis of the sample. All these results should be taken in comparison with other results to determine any meaning.

Your doctor would tell you if this was something to be concerned about. You are being monitored closely. If things change to a signifigant degree, they just take off the med without permanent damage.

Now of course, if your eyes turn yellow, get on the phone to your doctor. Also, if you develop abdominal or back pain, it could be a sign of pancreatitis.

Jan

Jan-

Here are those values:

AST 25 (normal 10-35 U/L)

ALT 29 (normal 9-46 U/L)

So we will see what happens between now and April 1 when my liver has the chance to absorb this new regimen I am on.

Thanks for your feedback.

Looks great to me. Could just be a little blip from the adjustment to MTX. 

Jan

I get bloodwork done monthly to monitor methotrexate impact. Oddly until I asked after several years of stability it was kept at a month. If I recall my monitoring on Azathioprine spaced out to 6 weeks maybe even 2 months. So I wonder if mtx in theory requires closer watch.  After several years of stability I asked my doc if we could monitor less frequently and she agreed. Alas then I became anemic and I chose to resume monthly monitoring for that.

Yes, MTX requires close monitoring at first, especially if you are changing doses of it or your other meds.

Jan

DeweyJ, and those of you taking Methotrexate, I have a question: my doctor told me to limit my alcohol consumption to 2 drinks a week and for the first few weeks I did that.  But I have been on vacation this week in Florida, visiting my parents among other things, and I have vastly exceeded that limitation the past week.  I probably had 10 drinks this week, mostly wine and cocktails.  One of my coworkers who takes Methotrexatre for RA told me as long as I don't drink the week before my monthly blood test I will probably be okay, and I am not getting one until April 1.  Is this kind of cheat going to allow a pass, if balanced off with no liquor the week before the blood test?

I kind of feel a little like one of these major league players trying to be clean on a drug test despite a cheat........there is some guilt, but not a lot......

lol. well yeah if your goal is to beat the test, then staying "clean" before your blood work might just do that.

here's what I understand and maybe Jan or someone else with greater knowledge than I can answer more scientifically.

my understanding is that the concern about adding alcohol in large quantity atop methotrexate in particular not to mention Remicade, is that your liver is taxed with each so as opposed to many other things in life where we might believe more is better, in this case less is more. ie more life to that liver.

the good news is that in some respects the liver is highly accommodative, and some peoples livers more so than others. you get monthly blood work so you might or might not see the impact. I would just wait and see what the bloodwork shows and respond accordingly.

in other words as you've already acknowledged, whats the point of trying to cheat the test if you will?

I am actually getting infused with Remicade as I write this - my 5th infusion, and second at 900 mg. 

My Methotrextate blood tests for early April and early May show that my liver chemistries are still within range but are trending upwards. The results:

April test

AST 24 (normal range 10-35)

ALT 25 (normal range 9-46)

May test

AST 33 (normal range 10-35)

ALT 39 (normal range 9-46)

Note the huge jumps of AST from 24 to 33 and ALT from 25 to 39. I am trending upwards and who knows whether the June tests may show a crash up and over the normal range.

CT Barrister, we are all wishing you the very best!.  You are such a incredible contributor to this site and one of the best informed. 

CT, those really are not huge changes, as those can be seen as normal fluctuations. Sure, they may be trends, but even if you do go over the standards, it may not be enough to stop or change treatment. My liver enzymes were 2-3 times the upper limit of normal when I first started biologics, and they went up for a while. Over the years they dropped back down into normal levels while staying on biologics. 

Looks like you are doing well. I go in for my second Remicade infusion next week. I expect things will be fine.

Jan

Thanks for your replies Clouseau and Jan - but it would be nice to see a fluctuation downward at the time of my next blood test in June.

On a more positive note, my pre-infusion blood pressure this morning was 106/60, the lowest it's been in some time. At my last infusion in March it was 140/90. I did drop about 10 pounds or so, but I was please with the BP. My PCP thought it had been creeping up due to age but my goal is to keep it 120/80 or lower through keeping my weight down and appropriate exercise.

Yes, it would be nice. Just don't be alarmed if it does not happen, or if it is sort of randomly all over the place. Looks like you are doing well, and taking it in stride.

Jan

It saddens me to read that so many of us are now on bio drugs including myself. I wish everyone a long lasting remission with little to no side effects.

So yesterday I was scoped again. The good news is I still look way better than last year but the bad news is that there are still scattered ulcerations and some mild areas of inflammation and polyps and pseudo polyps. One larger polyp was burned off in my ileum.

For the procedure I accepted 100 mg Fentanyl as a sedative but rejected versed because of the retrograde amnesia. My Doc asked me why and I told him I wanted to keep any memories I have and I cited the movie "A Clockwork Orange" as a reason why. The Yale medical student who observed the procedure laughed at this reference.

My Doc said next year to let him inject 2 mg of versed and I wouldn't have any retrograde amnesia at that dosage. Not sure if that is true, but I have a very clear picture in my head of the images I saw on the TV during yesterday's scope.

During the procedure my Doc noted the strictured area at my J Pouch inlet from the ileum. This he said was due to scar tissue from the chronic inflammation. This will be a problem possibly requiring balloon dilations in the future, but only if we fail to control the inflammation.

My Doctor felt that although I may have plateaued, everything still looks much better. I am not inflammation free but I might never be. He wants me to stay on Remicade for now, my next infusion is 900 mg on June 30, then scope in 6 months. He said if I am "stagnating" he will switch at that time to a different biologic. He had previously mentioned Entyvio but yesterday mentioned another one beginning with "I" I think. 

I told him that while we have doubled the Remicade dosage, I have cut the antibiotic dosage in half and perhaps that is effectively a wash in treatment resulting in the plateau we have observed.

In other news I am still tolerating the Methotrexate well and all my blood labs to date are very good. So he wants to see me in 3 months and scope again in 6 months.

Thanks for the update CT! So sounds like the Pouch didn't change from last scope to this scope? Not a bad thing since you had wonderful results last scope. I'll have my scope next month...praying for some improvement! 

CT, great report.  I may be on biologics someday in the future so this is very interesting and I love hearing such positive feedback.

I had an infusion two days ago, June 30, and felt great immediately from the time the infusion ended until now.

I seemed to be deteriorating in the 2 weeks prior to that last infusion on June 30.  I am not sure if this will become a pattern but in the week or two prior to the infusion on 6/30 my stools were watery and I was having a lot of nighttime leakage.  Since the infusion, BAM, formed stools, no urgency, no wateriness, no leakage.  Nothing else has changed in terms of my diet and meds.

You may need shorter infusion intervals. I am scheduled for 8 week intervals now, but my rheumatologist will change it to 6 weeks if my arthritis is not covered well with the 8 weeks. With arthritis, the protocol is 6 weeks, but 8 weeks is the recommended interval for IBD (at least initially, after induction). 

I remember when I was on Humira, I had to take it weekly, instead of the two week intervals.

So far, I am doing pretty good on the lower dose Remicade. I was off all antibiotics for two weeks without much in the way of gut symptoms. Then a few days ago I was bit by my cat. It quickly became infected, and I am on high dose Augmentin for a week. Bummer!

Jan

That is what I am thinking- I may need to go to 6 week intervals rather than 8.

CTBarrister- it's been awhile. How are you doing on Remicade?