Got a B on my colonoscopy. Doc says he’d like to see an A

Thanks so much for the info. If I get another uti, will see if Azithromycin is an option. Spots did not itch and flu like symptoms have subsided, although still have upset stomach. Also willl look into florastor. Hang in there Rusty and know we all sympathize with you, greatly.

Some mild abdominal cramps late morning two of the past four days. Last maybe a hour or two. Not bad. But I can feel it.
Feels a little like constipation cramps, bit of course, I am not constipated.

Is this my body adjusting to the 50mg a day of 6mp in a positive way? Or is this a side effect rearing its head?

Post Edited (Rusty Barr) : 8/8/2024 8:49:42 AM (GMT-8)

Hi Clo

Thanks

I do think I’ve felt them before but it’s been a long time. Probably when I’ve started one of the biologics.

I just don’t remember if that was part of the “good road”, like I had when starting Stelara every 4 weeks or when I started Humera (which worked great for 4 years)…

I should’ve kept a journal all these years.

Oh well. I’ll sit tight and see what happens in the coming days.

I don’t want to be messaging my doc for every little thing.

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They didn’t say anything about blood work. I messaged my doc through the portal this morning reminding him that I started 25mg on July 25 and moved up to 50mg a day on august 1st, and asked about blood work.

Nurse messaged me back, saying, yes, go to LabCorp and get blood work, they will send the paperwork.

Post Edited (Rusty Barr) : 8/9/2024 10:55:42 AM (GMT-8)

Ok. Good tips. I’ll cool the sugar before tests for sure. Thanks.

My liver enzymes are always high anyway because I have PSC. (Liver Bile ducts have narrowed. Can get worse. Can also remain stable. Sometimes people with IBD get this PSC (I think it’s 10%?) as well. Unfortunately for me, I got IBD in 2016 and with it came PSC. But fortunately, the PSC Has not gotten worse. But they are always watching that.)
I go to a liver specialist once a year who keeps an eye on that.

GI doc said something like “you being on this 6MP…this will help your IBD…oh…and your liver guy will like you being on 6MP as well”

I should have pressed him more about that comment when I was in his office but I didn’t.

Post Edited (Rusty Barr) : 8/10/2024 4:30:08 AM (GMT-8)

Rusty,

Check with your doctor before you do this.

I have high ALT and AST periodically. Meats and protein cause it to rise so I have to aware of that. We also had me start drinking a smoothie made of 10 strawberries, quarter cup blue berries, 8 to 12 ounces diet cranberry juice a a quarter cup of ground flaxseed. The flaxseed helps with lowering my levels. You have to be very careful if you do this and drink lots of liquids because it has been known to cause instructions if not enough water is taken throughout the day.

The flaxseed smoothie cuts my numbers to half so I am now in the mid to high normal range.

Clo

Hi

I’m not on anything specific that I know of for PSC.
I see a liver specialist yearly and he wants just a liver enzyme check blood work done periodically (every 3 months) and he wants an annual “special liver look” MRI.

Was diagnosed with the PSC the same time as UC in 2016. Well, first they thought it was the same thing Quincy has. PBC. But, no, it’s PSC (which is the worse of the two) and there’s not much out there about it. At least what I could find out on the web. From what I understand it’s a narrowing of the liver bile ducts that has occurred. And, Thank God. It has not gotten worse. From what I’ve read for some people it doesn’t get worse. So far, that’s me and Hopefully for me that is long term. I’m on year 8 of IBD and PSC.
As I said, I’ve read they don’t understand why some people get PSC with their UC. I think I read it’s 10 to 20% of UC patients get it.

Prior to starting the 6mp August 1st I had a compete blood work done (my GI typically checks everything, including the kitchen sink) and the GI said after the last results in July everything looked good. With PSC my liver enzymes are always elevated, but stable. Phos is the highest of the 3 for me. Usually around 200 to 300. “Normal people” is high of 121. The other 2…AST and ALT.
These are both usually 50 to 90s for me.
AST “normal people high” is 40. ALT “normal people high” is 44.
I grabbed the “normal high range numbers” off of past test results.

One time since 2016, I think it was the spring of 2024, the test results came in and all three of those liver categories I was in the normal range.
Not sure why that occurred, but it did.

But as I said. GI texted me after last full work up including those liver numbers. “Everything looks good”. And those are the kind of liver numbers I’ve been seeing in every work up since 2016.

Since the fall of 2023 …I have been doing really well….I inject Stelara every 4 weeks. I take 6mg of budesonide every morning. And I’ve just added the 50mg of 6mp August 1st.
I’m going to get blood work done on 8/14 related to my GI adding the 6mp.
Lord willing, my liver numbers will be what they have been, or they will have improved, and all the other numbers will look good too.

I was concerned when I started the 6mp, reading through all the possible bad effects. But, as posted above, by another forum member here, I forget who, but point taken….all the drugs we take here, they all have a long list of bad possibilities. What can we do?

As stated at the beginning of the thread. Had a colonoscopy this mid-summer. GI said I got a B and he thinks we can get it to an A, by adding the 6mp. So, that’s why he added that. And he said “your liver guy will really like that we are adding the 6mp”. But he didn’t say why. I should have asked why but I I didn’t.

GI said take 50mg of 6mp for 2 weeks then move up to 100mg a day.

I messaged him that I’d like to get blood work done at 14 days of the 50mg, and he agreed. I’ll go into LabCorp on August 14th and see what things look like. If things look good I’ll ask my GI if I can just stay on 50mg of 6mp and not move up to the 100mg. Since I am seeing some improvement on the 50mg. I do not want to over medicate. I’m not a fan of that. But, one thing at a time. I’m praying for good lab results later this week.

I have noticed some improvements of late with the 6mp. I Seem to be a little tighter (chunky stools, large McNuggets) and it also feels like frequency is a little less as well. I had some urgency developing, before starting the 6mp, and that seems to be going away.

I have felt some minor lower abdominal cramping in the late afternoon over the past week or so, that feels a little like constipation cramps. But they are very minor.
The days I have had this…they Usually goes away within an hour or so. Maybe this is the 6mp healing me up.

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Post Edited (Rusty Barr) : 8/12/2024 5:55:01 AM (GMT-8)

Ditto what mom said. I had that test early on when my dr was deciding if he should start me on imuran I think and the test showed I wouldn’t metabolize it well enough for it to be effective. I didn’t understand it at the time and still don’t, truth be told. I just remember my dr telling me the test showed it wouldn’t be effective for me.

Checking in to see how it's going.

FWIW.... When I have my labs done every 3 months.... I cut out almost all sugar At least 2 weeks before.... And it's still a little high.

Ive decided to try 3 weeks before and see if I can get it lower.

Clo

Rusty,

Usually GI does a baseline lab about 2 weeks after I up my dosage on methotrexate.... Then 6 to 8 weeks later, then every 12 weeks, unless I have issues.

On your night dosage. I take my methotrexate during or right after supper....depending on how I'm feeling and what's going on the next day. I eat about 5 to 530. This gives me a full tummy, which cuts down on nausea, and I can sleep thru some of the other side effects.... Doing it at bedtime didn't give me enough time to work thru some of the side effects on the next day. To find my best time I just kept moving my time forward until everything sorta clicked for me. But that took forever. The people in my support group said to time my symptoms from when I took my meds, figure out the time it would be most convenient for me to feel that way and adjust accordingly.

On the bloating, could it correspond to any other meds you are taking? Some of my supplements when taken at the same time of methotrexate caused my body to have aches, pains, bloating or bad gas. I had to use trial and error on those. I now separate and take 3 times a day with a little food... A Peanut butter cracker or something ... So something to think about.

I was so glad to read that your other issues are improving. I hope an increased dosage puts you back into "smooth sailing".

Last thought ...I'm in Texas. High heat and high humidity causes increased bloating and other issues for me. I also find that I do sweat more when I take methotrexate and that my body smells differently..... Antiperspirant/Deodorant brands work differently for me. I wonder if heat/humidity could be exasperating your issues?

Clo

Rusty,

Depending on where you look in the internet there are lists of possible side effects. I came across stomach bloating, gas and cramps. It indicated that it's possible for it to improve once your body adjusted to the medicine.... But honestly .. I just don't know.

I'd have the blood tests done so you have a base line. I'd also message my GI and tell him that since you are having these issues, if possible, you'd like to have you labs closely monitored at first and eventually go to a scheduled lab draw. 6mp is hard on the liver so you do have to watch it.

Take care and be cognizant if changes that are occurring.

Clo

50mg a day of 6mp. 8/1/24…i started that dose.

8/14/24 had blood work and everything looked good.

8/19/24 is the day I went up to the 100mg every night before bed on the 6mp per GIs instructions.
Today it’s 9/7/24.

I’m still taking my Stelara every 4 weeks and 6 mg of budesonide every morning.

I definitely see nice improvement in my IBD. Urgency is way down. Frequency is way down. Consistency of movement much less loose. Actually two pretty solid movements most mornings and then that’s it.

What I have noticed the past week or so is kind of a slight full feeling throughout the day.

And when sitting, especially …It’s almost like a slight pressure, pushing up from the middle of my lower abdominal area below my sternum area. No pain. No nausea. I would not call it bloated, but maybe that’s it…sort of.
I am still normally hungry and eating normally.
It’s Like a “I have already eaten a small meal” feeling, all waking hours. Especially feel it when sitting down.

No issues at bedtime or affecting sleep.

Hmmm

I’ve been on the 100mg dose of 6mp for almost 3 weeks. I’m guessing maybe I should ask for blood work check?

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Post Edited (Rusty Barr) : 9/7/2024 4:33:52 PM (GMT-4)