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Moving on to Humira

Clash

Clash

Catherine, GI said the same thing and the results sheet also said iron deficiency anemia and gave a brief description. We talked about an iron supplement but I was thinking I should ask for testing like endoscopy vor imaging to determine if there is an area higher up causing it.
 
Clash

Clash

Ok gurus, what do you all think of this plan? After some reading it seems that iron is most absorbed in the duodenum. I'm thinking of asking for an endoscopy to be scheduled when I call on Monday. Because an endoscopy would show into the duodenum, right?

We went through a food list yo kinda see if C was just missing iron in his diet. It seems he isn't. He does eat red meat(grass fed beef) although chicken is a constant staple. He is a kind of creature of habit so there's instant steelcut oatmeal most everyday, a peanut butter sandwhich or with pretzels. He is a Thai sushi fiend so that's about twice to three times a week. Then lots of chicken. Not as many vegetables as he used to get due to his work schedule but we try to get them into at least some. Plenty of dairy and even the cereal is fortified. Am I missing something? Could it be just diet?

Is there another test you guys would suggest? Since these results were middle May I'm going to ask they be repeated but to schedule endoscopy then if results are better than expected I can always cancel. What do you all think?
 
Maya142

Maya142

Moderator
Staff member
An endoscopy is not a bad idea. I'm surprised they didn't do it with the colonoscopy.

That said, when my daughter had iron deficiency anemia and when we scoped her duodenum was one of the places she did not have inflammation (she had inflammation in her stomach, terminal ileum and through her colon). She had a hard time tolerating iron supplements, but taking them with food helped a little.

Fingers and toes crossed that the biopsies look perfect!!
 
Clash

Clash

Since the lab snafu and the labs not being sent to the GI office until the day of the scope appt. we had no reason for an endoscopy. The colonoscopy was a follow up to the surgery to make sure all was healing right and that his CD hadn't returned at the site. And maybe since C has never had an endoscope show CD in those areas seen by endoscopy.

A previous lab work by rheumatologist showed slightly low HGB but just barely. No one seemed concerned about the anemia until we got these latest results that included ferritin and that was too late to add endoscopy.(Like the nurse faxed them down to doc as he was getting ready to wheel C in.

C had slight anemia at dx and tried iron supplements but he didn't tolerate any of the ones the GI px'ed. They would bind him up really bad, one ending in a short hospital stay to make sure it wasn't an obstruction but it was just the constipating factor of the iron supplement. So not sure what supplemental iron he px next and will the supplement interfere with the endoscopy results? I would think not but better to ask here than just wonder! Haha!

I hope the biopsies look great too, the GI took numerous ones throughout colon, surgical site and ileum so hopefully all comes back well.

I would just think that further testing to determine the cause of anemia would be warranted instead of blindly treating? Am I wrong? Is this going to sound far flung to the GI?
 
Maya142

Maya142

Moderator
Staff member
M had the same problems with iron supplements - constipation and nausea and bad abdominal pain. That's one of the reasons we moved to iron infusions - they were quick and easy and made a huge difference to M's fatigue. She had 5 I think.

We saw two hematologists but never got a real answer about the iron deficiency anemia except that she must have been bleeding from somewhere. M had never had visibly bloody BMs at the time and a stool test showed no blood. We eventually gave up trying to figure it out and just treated her.
 
Clash

Clash

Ok that's good to know. So, why the hematologists? Did she have all the tests to look for the source with the GI then sent to hematology?

So after the 5 infusions did it just straighten itself out? If the GI px'ed iron I fusions could we get them at our local hospital like in the iv lab?

If the blood was coming from somewhere high up like say the duodenum would occult tests show blood?
And negate the need for an endoscopy?

Thanks for a this information Maya142 I really do appreciate it!
 
Maya142

Maya142

Moderator
Staff member
M's rheumatologist was the one who wanted her to see a hematologist - I think she was just being cautious since M's ferritin was pretty low. So we saw one locally, who recommended iron supplements and if those didn't work, iron infusions. Then her rheumatologist wanted M to see the hematologist she knew :yrolleyes:(who also recommended the same thing).

After the 5 infusions, it did straighten itself out. M takes a multivitamin which has some iron in it and that's it - she's never had that problem again.

We did have the infusions done locally, in the local hematologist's office. They weren't long - maybe 30-45 minutes (though generally people on here seem to have longer ones).

If the blood was coming from somewhere high up like say the duodenum would occult tests show blood?
And negate the need for an endoscopy?
Click to expand...
I have no idea about this - wouldn't an occult blood test show blood coming from anywhere?
 
Farmwife

Farmwife

Clash, Grace had visible tears in her stomach in her upper scope and I pulled blood out of her tube and the occult blood sample showed nothing during this time. For Grace it wasn't accurate!
 
Catherine

Catherine

Moderator
The only really good absorbed sources food sources of iron are meat with red being the best by far.

Combining eating is required.

You need to add a source of vitamin c to the meat meals. Eg orange or pineapple juice.

He should avoid eating the following within 2 hours with way of the iron rich meal. Milk, dairy products, cola, tea or coffee.
 
Clash

Clash

I'd say at least 3 meals a week contain beef and then we usually have steak on the weekend or grilled burgers. How much more red meat would he need?

The rest of the time he is big on chicken as his protein. He eats a lot of fairly in the form of cheese, no mild unless cereal, no coffee and he does Apple juice or OJ with breakfast. I'll make sure he cuts back on soda, we just get the mini cans and he has maybe two a day.

Maya142 what did M's GI think of the anemia?
 
Mr chicken

Mr chicken

Clash once ferritin gets low your wont increaess it by diet alone
Iron is what he uses everyday ( think the dinner you cook )
Ferritin is the extra stores of the body ( think pantry )
If the pantry is nearly bare and he has more going into his meals everyday for whatever reason - the body won't catch up without a supplement or iv infusion
Iv infusions have high allergic reaction risks associated which with DS history we tried pills first .

DS took 50 mg elemental iron for 8 months before we saw a big rise
After a year it had built up significantly into the normal range
 
Clash

Clash

Thanks MLP, so here's another question referring to the JSpA. Does inflammation have to be occurring with the JSpA for there to be anemia? The rheumatologist said his xrays and scans looked really great. Which at least correlated with the fact that he hasn't had any pain. So is it another mechanism that causes the anemia with JSpA?

He sees the rheumatologist again in July for check up. We aren't adding the meloxicam because he is doing so well as far as no inflammation or pain so we aren't rocking the boat.

So do you look for the source since a possibility is active CD or do you just treat and move on? It's so hard to know, because C has been asymptomatic with active disease, if your best option is to test, test test or just treat and move forward
 
Pilgrim

Pilgrim

I would say treat and move forward. There's still time for Humira to work on underlying inflammation and there might be a night and day difference for him energy wise when the anemia is resolved by supplements or whatever route you go.
 
Maya142

Maya142

Moderator
Staff member
Clash, I had the timeline wrong. M's had iron deficiency anemia a year before she was diagnosed with Crohn's, not the year she was diagnosed. So her GI did bloodwork, an occult stool test (negative) and a FC (which was 78). Since the FC was only a tiny bit elevated, we did not scope at that time.

In retrospect, we think the iron deficiency anemia was caused by the Crohn's and not JSpA because her joints were actually doing very well at the time (she was on Humira when this happened).

If C's MRI's are clear and if his joints do not hurt or aren't very stiff, it seems unlikely that the JSpA is causing the anemia. I think anemia is JSpA is generally caused by very active arthritis. M is often anemic because of her arthritis, while my older daughter has only been anemic once.

Maybe you should ask his GI whether it should be investigated further given C's history of being asymptomatic? Another option would be to treat it for now, but if it happens again, then to follow up with tests (endoscopy, pillcam etc.).
 
Clash

Clash

I think I'm going to leave it up to C if he wants to just treat and move forward that's fine if he would rather treat and further investigate then that's fine too.

He was concerned about it yesterday when we were otw home but he was full of silly meds too so he may be past it today
 
C

crohnsinct

Well-known member
Wow Clash! I HATE when things are so muddied like this. I think your approach is a good one. Treat or test and talk with GI.

FWIW - O has anemia. Always has and seems always will. Her vegetarian eating doesn't help much. She takes iron every day but when she was really low in the fall our GI and dietician were all over infusions.

Would be interested to hear GI's take on this.
 
Clash

Clash

My cousin was always anemic but she was a girl and the Dr never took it very seriously and said it was due to diet and her period.

But I talked to my aunt today and she was always slightly anemic her ferritin levels were never as low as C's and she didn't have as low total saturation or whatever that one was.

The first time C was anemic it was only slightly so but he had also just been dx'ed so his CD was raging. I always thought the fatigue was anemia then but he is much more anemic now and it hasn't slowed him down at all. In fact, he went out with friends last night camping, worked all day today and is now out on the lake with his friends. He said the only way he can tell he's anemic is he gets cold really easily.
 
C

crohnsinct

Well-known member
Oh for sure I think something more than what is going on with O is at play with C. Weird though that he isn't feeling a change in his energy level etc.

Yeah, I always got the same with O...don't worry girl, diet blah blah blah and even with her initial flare they were sending us away with a referral to see a GI 3 months later. Not until I asked them to prick her finger and her HGB was 7 did they take it seriously. Makes me wonder if they took all those other tests seriously if we would have gotten a dx sooner.

So yeah, PTSD tells me C should check all aspects of all diseases!
 
L

lenny

My son was able to overcome his iron deficiency on a vegetarian diet. He eats a lot of lentils, baby spinach, hummus, strawberries, nuts (blended) and tofu. He's low on D.
 
Tesscorm

Tesscorm

Moderator
Staff member
S was anaemic at dx, HGB was below normal, ferritin was approx. 30 and dropped as low as 14. FWIW, he had inflammation at his duodenum when dxed.

He's never taken any iron supplements and, over time (quite a while), his HGB has gotten into normal range and his last ferritin level was 67 (but this was a year ago - ferritin hasn't been tested very often??).

It seems as S moved closer and closer to remission, both his HGB and ferritin improved.

If an infusion takes him into normal range, perhaps you can just 'treat' now with an infusion but keep testing ferritin; if it drops again, further testing (endoscopy) could then be done??

FYI, blackstrap molasses is a good source of iron. When my iron was low, I was adding a spoonful to my oatmeal (not great but not horrible either). I also added a spoon to a cup of hot water and just drank like coffee/tea (tasted better than it sounds but, again, not great).

Does he complain of Restless Leg Syndrome? It was horrible for me when my hgb and ferritin was low... improved as soon as my iron levels improved. I only take iron supplements sporadically now but, RLS seems to be a good (weird :lol:) indicator for me when my iron slips... as soon as I feel the beginnings of RLS, I supplement and it goes away.
 
Catherine

Catherine

Moderator
We treated iron issue for 4 years prior to dx. Sarah has a history of iron deficiency anemia with normal ferritin.

Ferritin acts as a marker of inflammation. So your ferritin levels can read normal or high even if though there are no iron stories. Make sure that iron studies or iron panel is done and not ferritin alone.

When the hemoglobin level drops slowly the body gets used to working with a low level of hemoglobin. In Sarah case she was swimming 16 hrs a week at hemoglobin level of mid 9.5.

Ideally before starting a trail of iron supplements you would have another blood test to the give the iron levels starting point. After two to three months you would retest and you should see an improvement in iron levels and hemoglobin. If you want to get a true reading of the iron levels you would stop supplement 3 days before the test as supplements can cause false high in the iron levels but this is more improvement when you deciding to cease supplementation.
 
Clash

Clash

Catherine did you see the results I posted on the previous page? Are there other tests he should have had? His ferritin was very low as was his total saturation.
 
Catherine

Catherine

Moderator
Sorry Clash, my post wasn't clear. The results you posted are iron studies. You could have B12 and folate run as they also effect hemoglobin levels.

My comment was in part about using ferritin and hemoglobin levels alone to decides wheather with iron deficiency Anemia is present.

Unlike most other supplements iron should only taken when it clearly needed. Iron supplementation require regular monitoring.
 
Clash

Clash

Oh ok I understand. They did do b12 and it was normal. I'll have to check and see if they did folate.

Edit to add: I looked and folate was good too.

So, are those accurate or could he truly low in one of those and it showing up in the iron instead? I'm probably not wording the question properly.
 
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C

crohnsinct

Well-known member
Geez Clash! I know from time to time one of my posts have confused you but nothing confuses me more than these iron discussions...except for maybe when you were going through all that POTS stuff. All I can say is C has the exact right mama on the case.

If I ever have an iron question you and Catherine are my go to!
 
Clash

Clash

CiC, nah I'm just as confused as you are.

I've been wracking my brain as to why his iron is low. I've even entertained the idea that he hasn't been as compliant with his folic acid as he should be.(he says otherwise). But then wouldn't that show up in folate instead of iron? I know he's compliant with humira and mtx because I'm right there when he does it or shortly after to remove the sharps container but folic acid is everyday. I'll have to start paying more attention but refills seem to be coming as. scheduled so idk.

I have a call into the GI nurse now.
 
C

crohnsinct

Well-known member
OOOOH! You may be on to something! That happened with O once. She wasn't taking her Folic acid and she got super anemic. I don't know what her folate showed but there are enough foods fortified with folate that maybe it would still come up normal but our mtx users need more? Just guessing here...I am much better with paper plate and spoon theories!

Keep us posted!
 
Tesscorm

Tesscorm

Moderator
Staff member
crohnsinct said:
nothing confuses me more than these iron discussions...!
Click to expand...
Me too!!! I thought I once had it all straight but... I'm just as confused as ever. :ybatty: Was great with MLP's analogy of the kitchen and pantry but then Catharine says ferritin does not reflect stores!! :yfaint:

But, won't jump in with questions because I'll just sidetrack needlessly! :)
 
Mr chicken

Mr chicken

In DS case ferritin was the only low value all his other numbers were normal so in his case it was reflective of the amount stored
Other can have increased ferritin numbers on blood work during inflammation.
I just haven't seen it for DS
 
Clash

Clash

So at one point in MLP paper it says if TIBC is high and ferritin low then that is a good indicator of iron deficiency anemia. C's ferritin was 4 with NNR 16-124 and his TIBC was 356 with NNR 250-450 so not really high. But do they mean high normal or high as in above normal?

Also did I miss something on folate. I read it to say folic acid induced anemia would show up quickly in folate results but am I reading that wrong?c's folate was solidly normal as was b-12.

And is in not concerning since his HGB is 11.0 NRR12.6-17.7 meaning since his HGB is only slightly below normal?
 
C

crohnsinct

Well-known member
Clash: What test did thy run to determine B12? If just the b12 level it isn't always a good indicator of deficiency. You have to run the MMA test. take a look at this from the forum wiki

Vitamin B12 deficiency leads to a serum build-up of methylmalonic acid and homocysteine. Because of this, Homocysteine and Methylmalonic acid levels are considered more reliable indicators of B12 deficiency than the concentration of B12 in blood. Upwards of 50% of patients with vitamin B12 levels between 200–400pg/ml (147.6-295.2pmol/L) will have a vitamin B12 deficiency on the basis of elevated levels of homocysteine and methylmalonic acid.[7] Other studies and papers suggest the same with slight variances on the levels

On another note....why can't I reply to messages...I am only given the option of quick reply anymore and when you quick reply you can't use smilies!
 
Clash

Clash

We've been using that test since I saw the thread on here about it. I just spoke with the GI nurse and he will start niferex. Well get blood work in a month. Hopefully this will take care of it. She is going to speak with the doc to see if he thinks further testing is warranted.
 
Clash

Clash

The GI really doesn't think that anything is going on higher up. He will redo lab work in a month and see where we stand. This made C happy so I'm happy!

Or course, I'll be anxiously awaiting those results and a trend upward over the next few sets of labs!
 
Maya142

Maya142

Moderator
Staff member
M's TIBC was high (above the upper limit) when she had iron deficiency anemia. Otherwise, her labs looked pretty much identical to C's. Her HBG was only a little bit low - 10 or something like that.

M's ferritin does reflect inflammation often - hers is usually way above the upper limit. It's only been in the normal range once or twice and low the one time she need iron infusions.
I don't know if this info is helpful at all but iron numbers really confuse me too :lol:

Very glad C doesn't need more tests for now. Hope the iron supplements do the trick.
 
Catherine

Catherine

Moderator
Clash said:
Edit to add: I looked and folate was good too.

So, are those accurate or could he truly low in one of those and it showing up in the iron instead? I'm probably not wording the question properly.
Click to expand...
No they won't show in the iron number.

Anemia cause by low iron make the red blood cells smaller.

Anemia cause by vitamin B12 and folate make the red cells blood bigger
 
Catherine

Catherine

Moderator
Clash said:
And is in not concerning since his HGB is 11.0 NRR12.6-17.7 meaning since his HGB is only slightly below normal?
Click to expand...
The answer to this question actually depends on where his haemoglobin level normal sits.

If It normally sits at just in the normal range it not that concerning yet.

If it normally sits higher it is more concerning.

For example my daughter (Sarah) haemoglobin is now always around 11.0 to 11.04. This also out of range for a female but is not considered concerning (that doesn't mean we don't want it higher). Daughter number 2 always has a haemoglobin level of 14.5, for her a level of 12.0 would be concerning even though that would still be a normal level.
 
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Clash

Clash

So C's biopsies came back and they are not good. I'm in slight shock right now and I know I didn't ask any of the questions I would need answered.

He has acute inflammation at the terminal ileum and the site of anastomosis, it's active CD. His colon is good. He will have to have a scope in 4-6 months. His follow up with the GI is scheduled for mid July as we were scheduling it for after his next rheumatologist appt which is mid July.

The nurse said better it was acute than chronic but he just had surgery last August, he has barely had time for anything to become chronic, in my opinion. I completely for got to ask about a dose or schedule change with the meds but I wouldn't have made a decision any way as C is away at the beach and he'll need to be in on all that.

He has been on humira for only 3 months so it still needs time anyway. Although, since it is acute I am concerned this has come about since starting the humira.

It always niggles in the back of my mind, a convo, the GI and I had early on about some patients not fully responding to tnf blockers. He explained in some patients tnf if the driving force in their CD inflammation, but in others it's only one of many. The ones where tnf is the driving force the patient gets great efficacy from remicade or humira but if tnf is equal to the other forces then they may get partial response but their disease may simmer on. He has said before that he is afraid C is one of the patients that doesn't get full response. He, in the past, mentioned other biologics instead of tnf but we decided to try humira first before writing them all off.

Ughh I really really freaking hate this disease. C left for the beach today so I'm not going to talk to him about it until he returns.
 
Tesscorm

Tesscorm

Moderator
Staff member
Ugh, I'm really sorry about this. How frustrating and maddening (the words don't do justice :voodoo:).

I suppose there's test for the TNF question/response??

Yep, lots of wine and chocolate... wish I could give you some hugs too! :ghug:
 
Farmwife

Farmwife

Hugs


Ya, the GI and rheumatologist think Grace is in the same boat.:(
When we finally combined all three meds it started working better and finally a clean( ish) scope.
 
L

Lindseyw4

sorry for your boy! at least he's out enjoying summer :) big hugs to you both. i'll raise my glass to the health and well being of you both tonight, with my own glass of wine
 
Mr chicken

Mr chicken

Hugs
That's a tough one ....
Humira takes 3-5 months to reach effective levels in the blood .
So it may be that it just isn't at a high enough level
Additionally you can go up to once a week dosing .
So still options
Enjoy the :wine
 
Maya142

Maya142

Moderator
Staff member
Really sorry to hear this Clash. M is also one of those kids - we have been talking about other kinds of biologics too.

Will be thinking of you and C :ghug:
 
Catherine

Catherine

Moderator
Sorry Clash, these explains the iron levels. In our experience it is unlikely that your son is going to respond to oral iron.

Thinking of you guys.
 
Clash

Clash

C just texted to say they made it safely to the beach. So I've got that worry behind me. He has to go into work the day he comes back so we'll probably tell him about the results on Sunday.

This sucks. Truly sucks but at least he isn't symptomatic so there's that.
 
pdx

pdx

So sorry to hear about the biopsy results. I really hope that a few more months on Humira (or a higher dose) can knock out the inflammation.
 
Chester31

Chester31

Location
Stockport, UK
Really sorry to hear this. I fear we may also be in the same boat. My son started Humira in March too but ended up in hospital for 5 days just a month in. He too has small bowel disease and suffers from anaemia. He is now on weekly Humira and has just added in Mtx. He is also on EEN through choice until he gets to the end of his GCSEs. So hoping the combo is going to get things under control but I have a nagging doubt....
 
C

crohnsinct

Well-known member
I can not even type the words I want to right now lest I get kicked off the forum! I can only imagine how gutted you were at this news. SO NOT FAIR! I effing hate Crohn's:voodoo::voodoo::voodoo:

I am really hoping that it is just a matter of the Humira needed a little more time or a dose/schedule change.

Did the doc say if there was anything else that could be added to the Humira to cover the "other causes"?

FWIW - our doc seems to be pretty jazzed with the way Entyvio works (remember my sticky stuff explanation). Maybe that would be a future option?

Is 8 a.m. to early for wine?
 
Clash

Clash

Thanks for all the support guys!

My husband and I have gone back and forth over now what? We'll give the humira time but honestly this seems eerily familiar to our experience with remicade. I loved remicade because with it my son became asymptomatic but if you look back it was almost two years of tweaking, upping and adding that only resulted in surgery. Was that time wasted? Could I have fought for one of the other biologics not related to anti tnf and gotten more promising results? How long do you give a med? 3 months is definitely not long enough but at scope time it will have been 7 or 9. C still has room of upping mtx as well. So up both or take the time to try one then the other so we can determine what is working(probably the better option but again more time)

I've been feeling guilty for really pushing C to stay local the first two years. Not that it was an issue once he got his "superjob"(he really loves this job and the people he works with, that is, in fact, who he is at the beach with, his work crew). That guilt is safely put to bed now! Ha!
 
Tesscorm

Tesscorm

Moderator
Staff member
Hate that you and C are now faced with these decision. :ymad:

What I'd meant to say in my post above is
I suppose there's NO test for the TNF question/response??
Click to expand...
I imagine there's not or C's GI would have run it before, but... thought I'd ask.

I do hope tweaking humira and/or mtx will do the job but, I understand the hesitation in wasting time 'tweaking'. What is your sense re the GI's next plan? I don't remember, has FC been a decent indicator for C? Could you take some time to tweak dosages but stay on top of it with relatively frequent FC testing?

Would he consider supplemental EN in addition to humira and mtx? Just asking because supplemental EN seemed to 'control' S's inflammation, didn't eliminate it but seemed to keep a lid on it for quite a while. Wondering if supplemental EN could help C in the same way; not allowing the inflammation to 'grow', while giving humira and mtx a bit more time to work??

Lots of hugs... :ghug: :ghug:
 
Clash

Clash

There may be a phenotype/genetic/cytokine blah blah test(like how I threw in everything but the kitchen sink there?) test but if GI mentioned it was in the clinical research area not in the we should test him area.

I've always said oooh FC is a good test for C but the GI isn't as sure, he has wondered if C's one normal FC was maybe not accurate since the area removed was so extensively ulcerated, lacerated and nearly perforated from chronic inflammation. His last FC was normal but nurse said yesterday she wouldn't take that to mean this cellular inflammation wasn't present then.

I'm not sure what C would or wouldn't consider. In spring he wouldn't have considered EN at all because he was battling his allergies and sinus gunk constantly. But, he may now.
 
Sascot

Sascot

Sorry to hear you are faced with these uncertainties and decisions. Hope whatever choice works in getting rid of the inflammation.
 
Tesscorm

Tesscorm

Moderator
Staff member
If he would consider EN at all, thru NG really made it simple for S. (Assuming C has no issues with daily insertions/removals.) He'd pop it in before bed, hook it up and be done when he woke - no thoughts re formula during the day.

Too bad about the test, actually both tests TNF and FC... Would be less frustrating if you were able to take out, at least, one or two of the unknowns. :(
 
Maya142

Maya142

Moderator
Staff member
There may be a phenotype/genetic/cytokine blah blah test(like how I threw in everything but the kitchen sink there?) test but if GI mentioned it was in the clinical research area not in the we should test him area.
Click to expand...
Our rheumatologist said the same - there are tests but they're very expensive and only currently used in research. Personally, I think it would be less expensive if insurance paid for them than for paying for us to blindly try drug after drug, hoping that one works.

Our GI is also excited about Entyvio. They would not use it for M though because of her JSpA, however, perhaps C's JSpA could be controlled just with MTX?

Sending HUGS!
 
Mehita

Mehita

So sorry to hear this news, Clash. Like the others have said, I hope it's just a matter of more time and adjustments with Humira, but I totally understand what you're saying about wasting time as well.

Might this be a case where he needs some EEN or pred to tide him over until Humira hits it's working period? It's not like this would mask symptoms since he doesn't have any anyway, though I suppose it could affect the scopes.

I wish there were better answers and options.
 
kimmidwife

kimmidwife

Very sorry to hear this news!
I think your doctor is right that antitinf may just not work for some people but also agree with giving it more time. really really hate Crohn's disease!!!!!!
Was hoping the combo treatment was really working for him. Though both drugs do take some time to kick in so maybe it really is just a matter of waiting longer. We are in the same waiting to kick in boat as well. 😓
 
Tesscorm

Tesscorm

Moderator
Staff member
How is acute vs chronic inflammation determined? Do you know how much inflammation is present? Just wondering, if it's only at the surgical site, is it possible that a small patch of inflammation was missed? Because if this is a possibility, it may mean that C's response to anti-tnf is not an issue at this point??

And, when inflammation reappears at surgical site, which I know is common, why is that? Why that same area and not somewhere else?
 
Clash

Clash

Maya142, same I doubt the rheumatologist would go with just mtx for his JSpA. With clean imaging and decent physical she was the one wanting the humira moved to once a week and meloxicam added and mtx upped.

Mehita, pred hasn't worked for C in the past he gets the awful pred side effects without the benefit. I'm going to ask him about EN. We will see how open to the idea he is. He won't drink them as he has never figured out how to without gagging and vomiting. Also, he may not be open because he is asymptomatic so kinda outta sight outta mind but I'm going to broach the subject with him.

Kimmidwife, yeah he has been on combo of biologic and mtx for quite sometime. Only the biologic has changed and back last year we switched to mtx injection. We're going to keep pushing forward with both for sure for now. I hope the meds kick in for Caitlin as well!

Tesscorm, the acute patches were found at the anastomosis but also throughout the ileum which was clean last time. I don't think any area was missed as they try to resect to both sides being clean. I'm assuming it is determined through the biopsy on acute or chronic but could imagine if the disease was visible to the eye then docs may have some visual comparison for that, like the surgeon saying C's respected area was blatantly, severely chronic when he removed it.

So now that the gangs all here I say we have another round of wine!
 
Maya142

Maya142

Moderator
Staff member
Would C use his NG tube? Maybe even supplemental EN (at night) would help.

It's so hard when they have multiple diseases - and it sounds like biologics are getting more specific (Entyvio for example). Then what do you do if your kiddo has both??

We're all with you on the wine :drink:
 
Clash

Clash

That's the subject I'm going to broach with him. I wouldn't even bring up drinking it since that has been a huge fail each time. Like I said about I don't know, since he is asymptomatic he may be in outta sight outta mind mode. In which case, EN wouldn't be something he would do.
 
Tesscorm

Tesscorm

Moderator
Staff member
Yeah, I was suggesting only supplemental at night. If it was EN that kept S 'stable', his only med was nexium, normal diet and 1500 cal of formula each night (1000 ml). As I said, it didn't take away all inflammation but kept the amount of inflammation constant for almost two years. I know this isn't the goal but I'm thinking supplemental EN might act almost as a stop-gap, while humira/mtx get some more time to work.
 
Clash

Clash

Tesscorm, I knew you meant EN. That is the only type C has ever done. He took in 2700+ calories over night then ate what he wanted during the day.

MLP, yep I read the one you posted. I've thought about this one, sounds interesting. I could be convinced but who knows with C. Diets, in the past only made him lose weight, no plus side. Also, since foods don't outwardly affect him he'd be a harder sell.
 
Maya142

Maya142

Moderator
Staff member
Came across this study:

In general, oral supplementation in iron-deficiency anemia should be administered with a target to restore/replenish the iron stores and the hemoglobin level in a suitable way. However, in patients with IBD flares and inadequate responses to or side effects with oral preparations, intravenous iron supplementation is the therapy of choice. Neither oral nor intravenous therapy seems to exacerbate the clinical course of IBD, and intravenous iron therapy can be administered even in active disease stages and concomitantly with biologics.In conclusion, because many physicians are in doubt as to how to manage anemia and iron deficiency in IBD, there is a clear need for the implementation of evidence-based recommendations on this matter. Based on the data presented, oral iron therapy should be preferred for patients with quiescent disease stages and trivial iron deficiency anemia unless such patients are intolerant or have an inadequate response, whereas intravenous iron supplementation may be of advantage in patients with aggravated anemia or flares of IBD because inflammation hampers intestinal absorption of iron.
Click to expand...
http://www.ncbi.nlm.nih.gov/pubmed/26061331
 
Mr chicken

Mr chicken

Yikes
No more googling
Go with the stats only 32 cases last year all year vs millions at the beach ( including elderly who have weaker immune systems )
So chances are slim
 
Clash

Clash

I'm trying! Are any of you guys seeing a lot of stories pertaining to it on your local stations? We are kinda being inundated. Of course, partially because a Mom in ATL is fighting it right now so that has only added to the frenzy.
 
C

crohnsinct

Well-known member
Haven't heard anything up here about it. But yuck! I don't know if it would un nerve me that much because I put my kid in a disgusting bacteria filled pool everyday. Got the talk from the GI about all the fecal matter found in the pools and how it is just one big germ soup. Apparently the chlorine and water temp aren't enough to kill it all. Ugh! Want to throw up just thinking about it so I don't!
 
Sascot

Sascot

Wow, that sounds awful. Something else to worry about! I remember being stressed for days after Andrew fell into a small stream near the house. Kept waiting for something to happen, but all was fine.
 
Clash

Clash

Maya142, I know you've told me before but I can't find it...what are the biologics approved for CD/JSpA? Is it just humira and remicade? Or is there others now? And what biologics have ongoing trials for AS that have already been approved for CD?
 
Mr chicken

Mr chicken

Clash there was a JSpA webinar today through the ssa .
They cover this but it was trials for adults so I didn't write it down
It should be on line next week
 
Maya142

Maya142

Moderator
Staff member
For AS and Crohn's - Remicade, Humira and Cimzia are approved.

Simponi is approved for AS and Ulcerative Colitis but not Crohn's. Simponi is a very easy, painless shot (though I will say M has not really improved at all on it so far).

Stelara (ustekinumab) - one small trial in AS (good results), many trials in Crohn's but not approved.

Secukinumab (IL 17 inhibitor - very new) - several AS trials look very good BUT appeared to worsen Crohn's, Crohn's trials were stopped in the middle of phase 2 I believe and now there is a warning on the drug. Right now approved for Psoriasis but will be approved for AS and Psoriatic Arthritis probably (this one is probably out for C, we are thinking about it for M though).

Xeljanz (tofacitnib) - This is a JAK inhibitor (and a pill). Approved for RA, in trials for AS and Crohn's. Don't know how the trials look, but a GI at Mount Sinai suggested it for M.

Apremilast (Otezla) is not a biologic but a small molecule (PDE4 inhibitor or something like that). It's approved for psoriatic arthritis. The trials for AS weren't that great. I don't think it has been tried in Crohn's. Side effects include diarrhea and weight loss so we ruled it out for M and I don't really know any more.

Unfortunately, those are all the ones I know of. We are in the same position with M (except of her AS is bad and CD is under control) and it just sucks so much. I wish there were more options :(
Sending hugs.
 
Clash

Clash

Also, did either of your girls try Cimzia? I can't remember. I'm sorry guys if my memory seems shot, ever since I started beta blockers, I literally can't remember from one moment to the next. It truly sucks!
 
Maya142

Maya142

Moderator
Staff member
I think Entyvio is gut specific and hasn't even been tried for AS.

However, S's rheumatologist told us of one patient she has who has IBD and AS (can't remember if it was Crohn's or Ulcerative Colitis). He was on Simponi but the IBD was out of control, so they added Entyvio. They put on him the intravenous form of Simponi (called Simponi Aria - so far only approved in RA, but exactly the same thing as the shots, just newer) so that they could lower the dose of Simponi easily.

With Simponi AND Entyvio he is now doing well. He is not much older than our kids she said - in his 20s or so. Thought it was a pretty interesting case.
 
Maya142

Maya142

Moderator
Staff member
No Cimzia yet for my girls. We may try it next for M before giving up on TNF-inhibitors (mostly because our options aren't so great for M - Stelara has barely been studied in AS and Secukinumab worsens Crohn's) or we may try Humira again (since is the only one M responded to REALLY well).
 
D

DanceMom

Bacteria at the beaches makes the local news every summer. I do worry, but I worry just as much when I take her to a theme park. We leave a week from today to spend a relaxing week at the beach. A week where I will do my best to put aside all my worries and enjoy life. I hope your boy is doing the same!
 
Clash

Clash

DanceMom, we live on a lake so in Georgia summers the risk is there as well, they just aren't squawking about on the news every evening. Ha But I hope he is having a blast and rolling his eyes that his Mom told him to check for cuts before going into the ocean and to avoid raw oysters! LOL
 
Clash

Clash

C made it home yesterday. He had a blast at the beach and is ready to go back! Ha!

He was a bit disheartened by the biopsy report. He didn't have much to say other than I thought I'd have longer.

He's been complaining of getting cold easily for about a month which makes sense because he is anemic.

Last night he mentioned he's been having hot flashes or sweats. Could this be the anemia? At dx, when he was flaring with symptoms, one of them was night sweats but I don't remember anything associated with daytime hot flashes/sweating(except maybe when he was on pred).
 
Tesscorm

Tesscorm

Moderator
Staff member
I don't know what the connection is with body temperature?? Stephen's complained for a couple of years now about his body temperature - in his case, he says he feels excessively cold in the winter (even when it's mild) and then very hot/sweaty in the summer. Although, he hasn't complained about it for months now?? Not sure how it ties in - started quite a while after his crohns dx, so timing seems off to say it's directly related to crohns and also a large time gap to when he started remicade. Now I can't remember if it started before/after remicade but do remember thinking there was too much of a gap for it to be related. His iron levels have been good for a while now. Also looked at his results related to thyroid (I think) and they looked fine too. Just strange that so many others have noticed issues with their body temperature (or sensitivity to temperature).

As for night sweats - S had same experience as C. Night sweats when flaring (winter/early spring - so not hot in the house) but noting during the day. What he feels now (or 'recently') is day and/or night...

So glad he had a good time but, it's a shame he had to come home to this news. :(

:ghug:
 
Clash

Clash

What he is experiencing now is not over night usually in the day time or evening. Air on, the rest of us chilled by A/C and he's sweating. Nothing really overly bothersome as he's only mentioned it. I was just wondering if it might be related to anemia. IBD can be related to some forms of autonomic dysfunction so it could just be that. In fact, his JSpA is too so maybe that.
 
Clash

Clash

Yeah, when C was experiencing tachycardia the GI said, so many reasons- low iron, meds or even autonomic dysfunction due to his CD. I guess I'm going put this up to that.

I have temperature dysregulation due to autonomic dysfunction and it sucks I'm always going the opposite way of the others in my house! Lately since I started working with a physical trainer I've seen improvement in all my symptoms! Woohoo!
 
Farmwife

Farmwife

We are talking about the temperature thing on my thread too.
Grace use to be hot and sweaty all the time. Horrible night sweats but since starting treatment that seems have gone away. Now she's to cold.:yfaint:
 
D

DanceMom

A also gets hot when she has a fever. I know most people feel chilled and shiver with a fever but she is stripping and grabbing an ice pack. That always baffled me.
 
Maya142

Maya142

Moderator
Staff member
We have the same thing with M - hot when she has a fever, but cold at all other times. She's also had really bad night sweats in the last month which we have put down to inflammation.
 
kimmidwife

kimmidwife

Caitlyn doesn't complain so much of feeling cold but if you touch her arms and legs they are freezing. Maybe this could be from the neuropathies that the neurologist told us occur in people with IBD?
 
Clash

Clash

So I just wanted to brag on C's GI nurse. She is just freakin' awesome. I had requested a letter for the office of disability at the college and I just received it. It's a great letter and addresses C's issues(when present for JSpA)so well. It covers all the norm and things I didn't think of and then goes on to emphasize that each case is so individual and it is important to be open to the students specific needs. I can't even describe how well thought out and written the letter is.

Still waiting on the rheumatologist letter but I'm not expecting much since she had the nurse call me back and tell me that C has juvenile spondyloarthropathy related to IBD so it's the GI who needs to write the letter since it is CD causing arthritis....seriously I mean his runs independent of his disease so when CD is fine(it's not) and joints aren't(they are) then the rheumatologist should cover how the joint pain affects QOL...sheesh.
 
Mr chicken

Mr chicken

Glad you got a good letter from the Gi
Sorry the Rheumo isn't being as helpful
Both docs gave Ds good letters specific to each issue
 
Clash

Clash

C has gotten GI letters before but a different nurse. They were good and fairly inclusive but it was in general terms with CD. The GI nurse C has now asked all kinds of questions and wanted our input. She hit all the generalities but then did great on specifics of C's case and was very inclusive of the JSpA issues and what needs he may have.

We'll see what the rheumatologist letter looks like soon I hope!
 
Maya142

Maya142

Moderator
Staff member
We got both for M - from both doctors. However, if you have a really good one from one doctor, I don't see why that would be an issue.

Hope C is feeling ok.
 
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