Will "mild" immunosuppressants effect results?

[6alice11]

Hi, I have a bit of a random question. Would medications like hydroxychloroquine and colchicine effect test results (calprotectin/colonoscopy etc)?
To cut a long story short I had symptoms for a few years from when I was about 19 and was diagnosed with Behcet's disease with "possible behcet's related colitis" at 21. I was always a bit skeptical about the diagnosis given my symptoms were mainly gut related but they said they'd start me on azathioprine to see if the gut was related or just IBS. I got a lot better for a few years but had to come off azathioprine suddenly when I was 24. I was switched to hydroxychloroquine and colchicine at the beginning of this year which I believe are less strong medications that reduce inflammation.

I went to my GP in August because I lost quite a lot of weight accidentally and my hair was starting to fall out (I lost about 7kg/ 15lb over a few weeks and I was pretty slim anyway). I just thought I was working too much and needed some vitamins or iron. I have a history of ovarian cancer as a child so she ordered a lot of tests to rule things out. I had a calprotectin test and the results came back at 216 (normal range of 50 it says) which I know is not crazy high but I just wondered if the medication I'm on would be reducing inflammation to some degree?

I wasn't flaring particularly at the time and had expected it to be normal as I was always told I didn't have IBD (I had a normal sigmoidoscopy years ago so was told I was just stressed ). She rang me with the results saying it seemed like Crohn's or UC and would push for an urgent colonoscopy because of my symptoms (weight loss, diarrhoea, blood in stool, lower right abdominal pain etc) and my previous cancer history but it hasn't happened yet (I assume it's due to covid flaring up again in the UK).

My Behcet's team aren't being very helpful (referred me to a dietician) so I just wondered if anyone had any idea how any of this was related? It would seem weird to have IBD as well as Behcet's especially as I always got told it was just IBS or stress so I imagine scopes will be clear. My weight is still dropping despite cutting my work hours right down and eating a lot more and I've been offered a new full time job so if anyone has any advice I'd really appreciate it.

Thank you

 

[my little penguin]

Colchicine can cause gut issues as a side effect
Ds was placed on it twice for Sweets syndrome (another neutrophilic dermatosis systemic disease ) which cause bloody diarrhea, abdominal cramping for two weeks after he stopped the meds.
He takes another biologic for that now
He also has crohns /juvenile arthritis.

bechets can cause Gi inflammation as well as skin /joint /eyes /brain etc.....

Gi flares tend to have fecal cal in the 1000’s

https://www.drugs.com/sfx/plaquenil-side-effects.html
Plaquenil can also cause Gi issues .....

hope you get a scope soon and some answers

 

[6alice11]

Colchicine can cause gut issues as a side effect
Ds was placed on it twice for Sweets syndrome (another neutrophilic dermatosis systemic disease ) which cause bloody diarrhea, abdominal cramping for two weeks after he stopped the meds.
He takes another biologic for that now
He also has crohns /juvenile arthritis.

bechets can cause Gi inflammation as well as skin /joint /eyes /brain etc.....

Gi flares tend to have fecal cal in the 1000’s

https://www.drugs.com/sfx/plaquenil-side-effects.html
Plaquenil can also cause Gi issues .....

hope you get a scope soon and some answers

Thanks so much for replying I had no idea that either of them could cause GI side effects so that makes a lot of sense

My symptoms are exactly the same as I had pre-treatment but milder so I don't know if the meds are not working as well as the azathioprine or it's side effects like you said. Either way I'll mention it to my GP who seems to think it's Crohn's or UC for some reason but what you said seems more likely.

I assume low level inflammation might explain why I can't absorb b12 (no pernicious anaemia and high dose tablets failed so I'm on injections for life but no one knew the cause)

Fortunately I don't have the typical Behcet's symptoms other than joint pain so I guess that's why they don't know what to do with me (I see a rheumatologist in a specialist centre not a gastro). They were planning on adding methotrexate as well so I don't know if that will help

Sounds like you son has had a tough time so I hope he's doing better now

 

[Lady Organic]

Considering your symptoms (weight loss, diarrhoea, blood in stool, lower right abdominal pain etc) I think a colonoscopy remains a very important thing to do. Hopefully you get it before you start any other treatment that could mask possible information in your colon.

 

[6alice11]

Considering your symptoms (weight loss, diarrhoea, blood in stool, lower right abdominal pain etc) I think a colonoscopy remains a very important thing to do. Hopefully you get it before you start any other treatment that could mask possible information in your colon.

That's a good point about starting new medication so I better not push to start anything else just yet. I don't know whether my current medication is causing the symptoms or covering them up.
My GP rang today saying she was referring me to a GI as the colorectal team were happy it wasn't cancer so wouldn't go straight for a scope like she had wanted. It's only a month wait and I guess it's good to discuss everything with someone who specialises in it rather than my rheumatologist (although he is very good).
I also had an appointment with a dietitian who has ordered me a lot of samples of shakes and things so hopefully that works as I had to go out and buy clothes from the kids section today

 

[Lady Organic]

Yes, especially methotrexate is a medication used also for IBD...

You mentionned you had a sigmoidoscopy only once correct? - Post azathiopurine?- Anyhow, a sigmo is not enough to rule out inflammation in the colon. A very common spot for disease involvement is at the end of a full scope, at the ileum. I hope this time you will get a complete colonoscopy, with biopsies in every section of colon.

I am really glad you get a exam with a GI specialist, sounds like a definite must with the important GI symptoms and weight loss you experience right now and I understand you GP to have these thoughts about IBD. Especially you mention you have been skeptical yourself of your Behcet diagnosis and that the GI issues have been the ones that bothered you the most in this journey... I understand all your questionning as it seems you got suboptimal examinations regarding your GI issues in the past and almost a random treatment for your colonic issues (a trial of Aza based on no scoping, nor evidence of colonic inflammation). Really time to have a full view inside when symptoms are going on and a opinion from a GI specialist! Its great you will be able to get it next month!

 

[6alice11]

Yes I had a sigmoidoscopy about 5 years ago before I had any diagnosis or treatment and it was fine I believe. When I initially saw the GI she just said "well I only do the top half" (of the digestive system) and told me I was stressed. When I said I wasn't stressed she said "sometimes you don't know you're stressed" and that was it really.

When I was being diagnosed the Behcet's team got a GI in (it's a clinic where you see multiple doctors/nurses on the same day then they discuss you while you wait). He basically said it wasn't inflammation (due to my clear sigmoidoscopy a couple of years before) so immunosuppressants wouldn't work and there was no point wasting time on tests etc. My rheumatologist (who is the clinical lead) thanked him for coming and as soon as he shut the door basically suggested we ignore everything he said and try Aza and if it worked we could assume the gut symptoms were related. This was all fine until I had to come off the Aza a few years later (side effects).

The weird thing is I feel a lot better than I did back then but clearly something is going on because I can't get my weight up at all but my FC isn't that high so I don't whether the hydroxychloroquine and colchicine are covering up symptoms or something.

On a side note has anyone ever passed what looks like small chunks of your gut/polyps? It sounds really bizarre but I just remembered this happening a few years ago and my GP shrugging it off as something that can happen when your gut is inflamed. It only happened once and it's the only time I've taken photos in the toilet or got someone else to look (my poor mom who I was living with luckily is an ex-nurse) and it definitely looked like small, round pieces of something that should be inside you not outside. I feel like if I mention this to a doctor they'll think I've gone mad and if I offer to show them a picture they'll definitely thing I'm weird... Luckily it never happened again but I was just wondering if this is a thing that can happen sometimes.

 

[Lady Organic]

Hopefully you get a better GI this time who will do full investigation to understand whats going on in your insides. -What a weird answer you got from the GI who scoped you, I never heard that one... usually GI will stop a scope if the patient is (even under sedation) awake because of extreme, extreme pain, when the scope cant pass the corner at the splenic flexure for instance. its a difficult spot to go through that can be very painful as the camera is trying to find its way in that corner of the colon, definately needs good skills and confidence from the GI. This only happened to me once we had to stop there. it was just impossible for me to bare and the GI couldnt find its way to acess the transverse colon.
As I said all GI know the ilieum is a very important spot to check, its just sad they overlooked it in your past investigation. make sure they dont miss it next time
Weight loss, diarrhea and blood cannot be taken this lightly. Your clinical GI symptoms have more value than the FC as an indication for complete testing. so I'd focus on the symptoms and not on the FC to push for full investigation in case you'd be facing another ''minimalist'' GI.

When I am really sick, the mucous and blood can be so full and thick it feels like my mucosa is coming out of my colon! Sounds like something different you experienced and i never experienced something isolated as you did. Worth asking the doctor if he\she wants to have a look at your picture.

 

[6alice11]

I really don't know why I was referred to her because she just focused on my reflux which wasn't new or troublesome. Hopefully I just got unlucky in the past and I live in a new area now so won't be seeing the same GI. The sigmoidoscopy was horrible - I found it extremely painful (and I'm normally ok with pain I think) but the gas and air made my speech too slurred for them to understand me so I couldn't tell them to stop. I got told that finding it painful is a sign of IBS so that basically confirmed that's what it was.

I'll definitely make sure they do something to check the ileum and now you mention it I think my Behcet's team mentioned it once (maybe in relation to my b12 problems but I can't remember). I'm guessing a colonoscopy will see some of the ileum? I got told after my surgery when I was younger I had weirdly long intestines so good luck to them.

I don't know whether it's all Behcet's related or if mild IBD is a thing? I've been offered a full time graduate job so I'm hoping to have some answers soon.

I had a CT scan recently but that was more to check for cancer because of the tumour I had as a child so no special contrast or anything. My GP rang me about it to say she still thought it was IBD but didn't mention inflammation just something about diverticulosis and referring me for an ultrasound because my remaining ovary was "prominent".

That sounds horrible and I hope you are doing ok now especially with everything going on currently. It was more like a few small balls about the size of your thumbnail that looked a bit like chunks of your gums maybe (pink with little blood vessels and everything). I'm not concerned about it I just wondered if it was common/what it was.

 

[Lady Organic]

yes Vit B12 is absorbed in the ileum. Its common for crohn's patient to need B12 supplementation. Thats my case.
Yes a full colonoscopy involves getting all the way up to the ileum. The GI will be able to see it.
IBD can have mild, moderate or severe presentation and course.
I just read about behcet and it was mentionned in wiki that it can cause digestive issues including bleeding. I am hoping your scope will be able to clarify where this blood is coming from and what causes it.
Yes I am in remission at the time and healthy, thx

 

[my little penguin]

Bechets can have gut inflammation which mimics crohns and is very hard to tell the difference
It also has vascular components that can cause very deep inflammation in the tissue of the gut that can be seen on cte or MRE but not in a colonoscopy .

good luck with your scope