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Calprotectin 926, Sed Rate increased

Hi -
My 10yr old son has been on Humira for 2 years now and has done really well. In the last month, his bowel movements have increased from 1-2 times daily to 3-5 times daily, and has been having stomach pain "that feels like Crohns". His dr is on maternity leave, but the dr taking over decided to repeat labs, get a Humira level, and calprotectin. His Sed Rate is 38, but even at his worst, it was only 30. His Calprotectin level scares me - 926. He also has had some blood in his stool. I'm still waiting on the Humira level, and for someone to get back to me.
Just curious what everyone's thoughts are - will they want repeat scopes?; is prednisone used in this case?; will they up the Humira dosing? I know a lot of this probably depends on the Humira level, but just wondering what other's experiences have been.
Thanks!
 

Maya142

Moderator
Staff member
Sorry to hear your kiddo is flaring :(! I would guess that if the Humira level is low, they will increase the dose from biweekly to weekly. If they're normal and he has antibodies, then they may consider switching him to something else.

Your doctor may also consider adding Methotrexate - it can increase trough levels of the drug and help prevent antibodies from forming.

In terms of Prednisone, the answer is maybe. It really depends on the patient. In his case, I think it would act as a bridge until Humira at the higher dose kicks in. But since he doesn't have terrible symptoms, then perhaps he can hang on until Humira kicks in and can avoid steroids.

But then on the other hand, considering he has a very high FCP and a high ESR and clear symptoms of Crohn's, another possibility would be to use a steroid, usually at a pretty high dose (usually 40 mg of Pred) induce remission. Then weekly Humira would maintain it.
 
His Dr is on maternity leave, so another dr called me back. She didn't have the Humira level yet, which will dictate how we proceed. She said she is going to review his file, but since it's been 2.5 years since scopes/MRE, we may need to repeat that. While I don't want to put him thru it, I think it may be a good idea. Or do you think it's reasonable to increase Humira (depending) and possible do some steroids to see if things improve before we repeat scopes/MRE? He also takes Azathioprine 75mg daily.
 

my little penguin

Moderator
Staff member
I would assume scopes MRE first
So they know where he is at now
Then probably increase humira or switch meds with pred as a bridge
Given he is on humira plus aza they might just switch meds
But definitely can’t add mtx

Ds had to stop humira almost two years ago
It’s stopped working (for his arthritis - crohns was ok)
Switched to Stelara which required steroids as a bridge for about 6 months

Good luck
Hope things calm down soon

Remember that een can be used as a bridge as well instead of steroids
Ds has done this a few times
 

Maya142

Moderator
Staff member
I would agree - scopes/MRE are a good idea if it's been 2 years or more. That will give a better idea of what is going on - where the disease is, how bad it is.

And yes, MTX + Aza would be too much for his liver probably, but you could swap Aza for MTX. MTX is now considered safer, particularly in boys.
 
Sorry to hear about the flare. My daughter has had several flares over the past four years and almost every time her Remicade levels were low (and once she had detectable Remicade antibodies as well). Each time, her doctor upped her Remicade dose and the flare ended. She didn't get a scope or MRE any of those times.

This past year, she flared again but turned out to have fairly high Remicade levels. Despite her high levels, her doctor upped her Remicade dose once again, and the flare ended. However, as it had been more than 3 years since her last MRE and scopes, she went ahead and ordered both just to make sure there wasn't any lingering inflammation. They were both clear, so we're still hanging in there with Remicade.

So that's a long way of saying that you may just need a Humira dose increase. Hang in there while you wait for levels, and I hope that your son responds quickly to whatever treatment change you try!
 
I know it isn't popular with us parents on the forum but my girls have had two GI's and in a situation such as this they would test levels and respond accordingly and wouldn't scope. Both docs would say, "no need to scope, I know there is inflammation and it won't change my plan of action". So I think it would be totally reasonable to ask the GI if scoping will change the plan of action. If so, then I would go ahead and scope. If not, I might be inclined to go ahead and make any changes and scope later to make sure they are working.

Your son's situation is why most GI's don't like to go longer than 2 years between scopes. Regular surveillance scopes will catch simmering inflammation that hasn't yet caused symptoms or raised labs to alarming levels. Although there is no guarantee that you would have caught this anyway so don't start kicking yourself.

As for what we have done in the past, we have bobbed and weaved with Remicade levels and a few times when levels seemed sufficient we have done a course of prednisone or budesonide to get her healed to the point where the Remicade could take over.

Good luck and keep us posted.
 

my little penguin

Moderator
Staff member
Honestly scoping/imaging is not just to “change “ the treatment plan
Scoping/imaging is required to know the extent of the inflammation
Has the disease spread , has the type of disease changed
Kids go from inflammation to stricturing fisstulas etc much more so than adults and it changes over 10 years - they know this
To document where he is at now inflammation wise so if you make changes like increase humira
Then you know whether those changes - made thing better , worse or kept the level of inflammation the same
Knowing there is inflammation is a no brainer
Knowing the extent of inflammation and type of disease /spread is impossible with just blood/stool
Lastly crohns kids are at high risk for colon cancer
The longer they have the disease
Inflammation causes cellular changes
Cellular changes can result in cancer
After 8 -10 years regardless of symptoms of crohns
It is recommended to have yearly scopes just to have surveillance for cancer

So yes scopes AND imaging are extremely important part of managing this disease
 
That is my main worry to see if there is stricturing/fistulas/cancer - and those things you can really only view on scopes, correct? He had life-threatening reaction to Remicade on 4th infusion despite all the pre-meds, and ended up with very high antibodies. If they determine the Humira isn't working, what else is there for his age? I know nothing that is approved. I'm seeing that possibly Cimzia or Entyvio may be options?
 

my little penguin

Moderator
Staff member
Stelera is also an option for crohns
Ds started that almost two years ago at age 13
Entyvio is more successful in UC per our kiddie Gi
And prefers Stelara for his crohns patients
 
His Humira level is normal at 12.6. He may just need a more frequent dose, as some of you suspected. But they want to reassess the disease activity and progression before we make any moves. I hate to put him thru it, but I think it's a good idea. I'll keep you guys posted. I appreciate the posts!
 

my little penguin

Moderator
Staff member
Just an FYI dosing for humira can be
40 mg every 2 weeks
40 mg every 10 days
40 mg every 7 days
And highest dose 40 mg every 5 days
Ds was on all of these at various times over 5 years
Good luck woth the scopes imaging
 

Maya142

Moderator
Staff member
In his case, I agree that scoping makes sense. Like MLP said, his disease could have spread. It could have become worse.

I don't mean to scare you, but I remember one story on the forum years ago - GI kept saying there was no need to scope. Kiddo had continued symptoms which were called IBS. GI finally agreed to sigmoidoscopy which was clean. Kiddo continued to have bad symptoms for months before Mom and Dad pushed for a full colonoscopy. After the scope, the GI came out to tell them their little girl's terminal ileum was one giant ulcer and had to be removed ASAP.

Now this was years ago, probably before Fecal Calprotectin was used frequently. So yes, now we do have a good way to monitor inflammation without scoping. But I still think scopes are very necessary in children to see if the disease has spread or progressed. And like you said - fistulas and strictures often can't be seen without imaging - an MRE usually. And those may change the treatment, so imaging is important.

Of course, if you've scoped a kid 6 months ago and if after increasing their dose, they were still flaring, then I'd understand switching to a new drug without scoping/imaging.

But if last scopes were years ago, I'd want scopes/MRE done first.
 
Update: MRE showed active inflammation of terminal ileum, cecum and appendix.
The scopes showed congested, erythematous, friable, ulcerated mucosa in the recto-sigmoid colon, cecum, ileocecal valve, and terminal ileum. Patchy moderately erythematous mucosa in gastric fundus and gastric body.
So basically, he's out of remission and things are quite similar, if not a little worse than the last scopes. It appears Humira isn't doing the job. They want to wait for the biopsies to see whether they will increase Humira to weekly, while adding on steroids, or changing meds altogether. They mentioned Stelara or Cimzia. They said the Entyvio is more colonic and for UC, like one of you mentioned. Oh - but no strictures or fistulas, so that's great news. So, we'll see. Keep you posted!
 

my little penguin

Moderator
Staff member
When Ds failed humira after 5 years the docs went with stelara over Cimzia
In Ds case they said his body had been flooded with anti tnf for 6 years
They thought a different agent would be better
Hope they get a good plan for your kiddo
Be prepared stelara is only approved for 18 and up

Less than 12 years old is harder to get approval
We had a long battle with insurance
At age 13
Stelara also took a very long time 8 months and Ds needed high dose every 4 weeks
 
Sorry to hear about the results, but at least you can move forward with changes now. How is your son feeling?
 

Maya142

Moderator
Staff member
Oh no! Poor kiddo. Definitely sounds like he needs a new med.

My daughter is currently on Cimzia. She has Crohn's in her colon, including her rectum and also in her terminal ileum. It's always been worst in her terminal ileum, but it is still mild Crohn's overall. Scopes usually show some ulcers and inflammation but nothing terrible.

She has done very well on Cimzia. No side effects except a mild injection site reaction, which went away after several doses. She gets 2 shots (each is 200 mg) every month - so a total of 400 mg evert 4 weeks.

It can also be given as 1 shot (200 mg) every 2 weeks, but once a month is more convenient for us.

The shot does not burn like the old Humira did but it does sting when injected. It's very, very thick and we've found that injecting very slowly minimizes the pain. M has been on it roughly 2 years (with a break in between for 6 months, because of insurance issues) and it has worked very well for her. Her last Fecal Calprotectin was 19 - an all time low for her!

M had been on 4 anti-TNFs when she started Cimzia. (Humira, Enbrel, Remicade, Simponi). Anti-TNFs do not work for her arthritis, which is severe, but do work for her Crohn's, so her GI felt it was worth a try. So far, we've been very happy with Cimzia.
 
The dr called, and said that the biopsies were pretty consistent with their scope findings. Sounds like his terminal ileum, and cecum are the worst with ulcers/inflammation. His rectum/sigmoid colon isn't great either. They want to up the Humira to once weekly and see how that goes. They said it works rather quickly. They said they are trying to get away from using steroids, as they mask the symptoms, while the inflammation is still present. They did say that if the pain/diarrhea/bleeding continue, we can try Entocort since it works topically in the intestines. We are going to run labe the week of June 10th and see them on June 20th to discuss if this seems to be working. His trend in Humira levels has gone down each time, even though it's considered a theraputic level, so they think he may be a kid that just needs more. Fingers crossed. If not, then we'll be discussing Stelara or Cimzia. I can't say enough how I appreciate all of your responses.
 
It's great that there is a plan of action in place. Let's hope this gets your son to a better place. :thumleft:

 
I just posted on someone else's thread that a lot of kids need much higher levels of the drug to get to remission. Remicade says a level of 4-7 is sufficient yet O needed to be at a level of 12.

Sounds like a good plan. I hope it works!
 

Maya142

Moderator
Staff member
Glad there's a plan! I hope the switch to weekly Humira makes a difference. Is he still on the Azathioprine?

They can also test Azathioprine levels - they test for a metabolite, 6 TGN which should be between therapeutic levels. My daughter had very low levels so to "optimize" treatment, we tried increasing the dose. It did help her Crohn's to get her to therapeutic levels but then she got too many infections so we discontinued Imuran.

Switching to MTX is another option - I'm actually kind of surprised they are using Imuran because at our children's hospital, they don't like giving it to kids unless they have failed MTX, particularly for adolescent boys. Your son isn't quite there yet but wanted to mention it.
 
Hi Everyone -
It's been about 6 weeks of doing Humira 40 every 7 days. He has good days and bad days with stomach pain, diarrhea, and bleeding. We did labs, and his calprotectin went up from 926 to >1250. Not good, right? His sed rate went down from 38 to 19 though. Our appointment is tomorrow, and I don't know what they will suggest. Not sure if it's time to move on from Humira or not. Ugh!!
 
Not great but not horrible. There could be hundreds of points swing in cal pro from one day to the next. Especially at the upper ranges...upper ranges can swing 300 points from day to day. So at the very least it hasn't budged and yes, potentially increased. It is rather curious that the sed rate went down that much though. But sed rate is slow to react so who knows what it really is and if your son is like so many here he could have a perfectly normal sed rate and still be inflamed. One of my girls never shows inflammation in her blood labs. It's all about the poop!

Have they run another levels test to see where he is at now? How many years has he been on Humira? Sometimes they just lose response to a med and have to move on.

How is he feeling?

Good luck at the appointment! Keep us posted.
 
They didn't order another Humira level. I'll suggest that tomorrow at our appointment. It's been 2 years 3 months on Humira. He's ok overall, but he says it feels like razor blades when he poops, and there is a lot of blood when he wipes. Should he be on rectal enemas or suppositories?
His sed rate has never been higher than the 38. He's always corresponded pretty well with calprotectin levels based on his symptoms/scopes. I tend to think it's really increased. So that in and of itself should be a reason to move on, do you think?
 
Yeah, I would add suppositories or a steroid cream (not an enema, that will shoot right past the problem area) to see if you could get those anal issues more comfortable for him. Sounds like some pretty bad fissures. O uses the suppositories for rectal inflammation but I understand from the parents here that they can be hard to use with fissures. For the first time ever they gave O a cream with a tiny little screw on applicator. You insert the applicator and then squeeze the cream in. The applicator is just way too short to reach where O's inflammation is but I am thinking it might get to fissures and be A LOT more comfortable than suppositories. Worth trying at least just to make him comfortable.

Yeah, you know I am a cal pro fan. I am thinking he is just losing response to Humira BUT before I abandon a med I would want ALL the necessary information and the only piece you are missing right now is his level. It would totally stink to leave a med and then find out that he just didn't have enough and then not be able to go back because of antibodies. True there are a lot more meds on the market now but they don't have the success rate that Remicade and Humira have. Add to this the fact that your best shot at responding to a biologic is your first one, I would want to make sure I optimized that therapy as much as possible before moving on (but don't wait too long like our GI did). Oh wait! Just went up and re read your post. You are giving it to him every 7days...hmpf. IDK a lot about dosing Humira. Is 40 the kiddie dose or adult? I know quite a few kids on here needed the adult dose.

Ask the GI about adding something to help get that inflammation down now so that way maybe Humira will be able to maintain. Maybe add the Entocort (although my girls have no luck with Entocort). EEN? Steroids?

Good luck. I think you will have a lot more answers tomorrow. In the meanwhile at least ask for a rectal/anal topical to make him more comfortable.
 

my little penguin

Moderator
Staff member
Humira can be given up to every 5 days at 40 mg
But only if his levels are low
With that fecal cal ....
May want to look elsewhere
Ds switched from humira to Stelara
But needed Stelara every 4 weeks
Hard to get insurance to approve but doable
Easier once they turn 12 though

Creams aren’t going to fix the issue
Needs a systemic med to keep that level down
Please talk to your doc about switching
Cchmc has a trial woth Cimzia for pediatric. Use
There is also simponi (but most like that for UC not crohns )
 
Yeah, 40 every other week is an adult dose, but they upped it to weekly about 6 weeks ago after the scopes. His last Humira level before we upped it, was 12, so should've been a therapeutic level and working as it was. Thinking he's losing response. But maybe to just try to optimize it we'll try Entocort, rectal topical and draw a Humira level to see before switching? Do you guys think that staying with a TNF alpha is the way to go, or just trying Stelara?
 
Yeah...here is where you enter Medicine is an art not a science land. It is hard to know if this is a flare or losing response. If a flare, treat it and hope that then the maintenance med can well...maintain. Entocort or steroids or EEN could treat the flare. Years ago, before we had all these other med choices, ped GI's would treat the flares with steroids and then go back to maintenance mode. Sometimes it worked, sometimes the "flare" was actually a loss of response. Since all the new meds have been introduced it seems we assume loss of response a lot faster and move on. Clearly not our GI because we hobbled along for three years before he called it and you definitely don't want that! There is a balance somewhere, you just have to find it.

Oh and I didn't mean that the cream would fix all his issues BUT it will treat those pesky fissures and make him a lot more comfortable while they figure this thing out. Big fan of topical therapy here!
 

my little penguin

Moderator
Staff member
It depends
We went up to every 5 days from every 7
But he was fine at every 7 for a year
And then every 5 for a year and half

We were told at that point he had been on anti tnf for 6 years so they thought his body would respond better to Stelara
Stelara takes a long time to work abd was the only time they saw evidence of mild crohns again on his scopes was after 6 months of Stelara at every 8 weeks
Prior to that no evidence for 6 plus years of scoping yearly

On humira abd remicade
His joints got worse for his arthritis
But so far not bad enough to pull Stelara
Crohns at every 4 weeks is stable no inflammation on fecal cal

We were told at this point
Meds are just a gamble
They don’t know what will or won’t work after humira abd remicade
🤦‍♀️
 
If he is losing response, it is likely because his body up regulated other mechanisms of inflammation (not tumor necrosis factor) so IMHO and that of the GI's I follow, you would be better off changing to another mechanism of action. So Stelara or Entyvio would usually be up next. Stelara has a better Crohn's success rate but not so much in the colon. Entyvio has a good success rate in colon (37 %) but not so much from Crohn's. Pretty much what MLP said. Until they have a way of figuring out what mechanism is driving your disease, they won't know which drug to try next.
 

my little penguin

Moderator
Staff member
For ds it didn’t matters since he wasnt responding
If he isn’t getting better immediately after the shot 24-48 hours
Then we knew it wasn’t doing anything
So going up in frequency wouldn’t help Ds
If he was ok for 4-5 days then got worse then we knew he needed a more frequent dose
If that makes sense
 
I would get it if for no other reason than piece of mind. If levels are off the chart high then you know you are making the right choice. I always try to avoid the "what if" questions that will make me crazy later on. I am still what if'ing dropping Remicade...like what if we just added a topical for rectal inflammation...what if we just added mtx or a round of EEN...and so on.
 

Maya142

Moderator
Staff member
He's ok overall, but he says it feels like razor blades when he poops, and there is a lot of blood when he wipes. Should he be on rectal enemas or suppositories?
Poor kiddo!! My daughter has fissures and she described it as "pooping glass" - it really hurts! She was put on hydrocortisone suppositories and while she hated them (they were very painful for her to insert), they worked like magic. We had already tried a topical cream but that did not work for her. The suppositories really did though.

At his appt. make sure to tell his GI about the rectal pain with pooping. Will he let you or the GI look at his bottom? Often you can see fissures on the outside. They also may want to do a rectal exam, so you might want to prepare him for that.

As for Humira, it can be given more often, but like the others said, if it's a dosing issue, typically you see a response that wanes as you get closer to the shot. For example, we gave up on Humira when it was lasting 3 days and M was taking it every 6 days. So she'd only have 3 good-ish days for every dosing cycle.

As for switching to another kind of biologic, we did not for my daughter's arthritis (her IBD responded well to anti-TNFs but her arthritis did not). So we tried 4 different anti-TNFs. She did great on Humira until she lost response, and did well on Remicade for a while. But trying other anti-TNFs after that was sort of pointless because she had just lost response to all anti-TNFs for her arthritis. We really needed to switch to a biologic that worked differently and once one was available, we switched to that and she did MUCH better on it.

That said, I have heard mixed things about Stelara and Entyvio, so it's hard to know what it is the best choice. It's really just trial and error - like mentioned above, you could use Cimzia or Simponi, which are anti-TNFs or Stelara (IL-23 and IL-12 inhibitor) or Entyvio which is gut specific.
 
So, the dr asked Ian if he's felt better, the same, or worse over the last 6 weeks that we've done Humira every week. He said, "a little worse". Dr was slightly encouraged that the SED rate went down a little, but I told her he's mainly correlated with the calprotectin level. Even when he was throwing up 3 months straight, his sed rate was only 30. I don't know why they didn't do the Humira level with the rest of the labs, so we had it drawn there, along with Iron tests, and she wanted to test for C diff. Luckily Ian had to poop while we were there, so that was convenient. I'm sure he doesn't have cdiff though.
So, when he first started Humira over 2 years ago, he was on 40mg every week. His level was in 30's. Eventually they went to every other week, and over the years, his level has gradually come down, but should still have been therapeutic.. His level in March when he was flaring was 12. So this is the plan - 1) If Humira is in the 30's again and he's still having these symptoms, it's clearly not working for him and we need to change. 2) If level is <12, they want to increase to 80 weekly - this is 4x normal adult dose! 3) if btwn 12 and 30's they still want to increase and see how he does. Because it worked for 2 years, they really don't want to give up on it just yet. Maybe he just needs to be in the 30's for it to work for him. So now we wait. If we change, there's Cimzia which works the same way as Remicade and Humira, so likely that won't work either. Or there's Stelara which works differently, but then there's nowhere to go from there. So, that's the plan. She also had to check his butt, and she thinks there's "skin breakdown" and possible fissure from the inflammation and just going more, which is causing the bleeding, so she wants us to use diaper cream for now. She said no to the hydrocortisone cr/suppositories for now. She also said no to Entocort right now too, unless he gets significantly sicker, since we won't know if it's that or the increased Humira (if that's what we do again) that is helping.
But, isn't 80 every week way too much??
 
Makes total sense to just change one thing at a time.

80 every week is not too much if that is what your child needs. I have read studies that say the risk is independent of dosing so that shouldn't be a worry. A lot of time we worry that needing more med means our kids have more severe disease but honestly it could just be his metabolism burning through the drug faster. Sometimes it could mean that you are in a bit of a flare because inflammation sops up the dog faster causing lower levels. So you up the dose until they get to a good solid remission and then you can slowly try to back down to find the super sweet spot.

Honestly, kids have super high metabolisms and more aggressive disease so it should really be the adults getting nervous when they are put on kiddies doses;)

I really hope the bump up in Humira makes a difference. 12 vs 30 when he was doing well is a BIG difference and that could be the answer. Fingers crossed.
 

my little penguin

Moderator
Staff member
80 mg a week is actually 40 mg every 5 days
And no it’s not too much
Ds was on 40 mg every 5 days (80 mg a week)
For over a year
The way the Rheumo put it
If you needed 40 mg at 70 lbs
That is so x mg/kg
And now the kiddo weighs 100 lbs of course you increase frequency to get back to x kg/mg
Since humira only comes in one dose
Remicade they increase the amount a kid gets all the time since it’s based on weight
Adults are done growing so no weight gain

The only issue is if he isn’t getting relief right after the shot and it’s wearing off
In our experience increasing frequency doesn’t really help
Good luck 👍🏻🍀
 
I'm so glad to have your perspectives. The 80mg every week just sounded crazy to me. This last time we did the shot on Thursday, he still had 4-5 stools, some of them diarrhea, and bleeding the day after. So you are saying that he should be better the day after the shot? Does it really work that fast? I just got a notification from the portal that his test result was in, and his Humira level is 21. I'm guessing they will want to increase it then and see. When do you think it would be appropriate to do another level to check? Thank you all so much for your replies - it really helps!
 
Sounds like an increase is in order to me. My girls didn't use Humira. These drugs are good but they aren't miracle workers. I would give it at least two shots to do it's thing as far as symptoms go. Fingers crossed those levels come up and that is all that was needed!
 
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Maya142

Moderator
Staff member
80 mg a week is actually 40 mg every 5 days
And no it’s not too much
Ds was on 40 mg every 5 days (80 mg a week)
For over a year
The way the Rheumo put it
MLP wasn't your son on Humira every 5 days? That's 6 40 mg shots per month.
80 mg per week means 8 40 mg shots per month. So close, but not the same.


But I have heard of kids with severe IBD and severe arthritis on 80 mg per week. My daughter was on 20 mg/kg of Remicade every 4 weeks - many times the "normal" dose of 5 mg/kg every 8 weeks for quite a while - no issues.
 
His Humira level came back at 21. Now his regular dr is back from maternity leave, and she called me last week. She wants him to stay on 40mg weekly for another month, and then repeat all the labs. She thinks it may just need more time for the healing. So we are holding steady. She may be right - he's been better the last few days. She doesn't really want to do the 80 weekly. And if the labs/symptoms indicate no change, she doesn't think Cimzia will work either. She wants to go straight to Stelara. So, fingers crossed for the Humira just needing more time. I"ll keep you posted!
 

Maya142

Moderator
Staff member
He's failed Remicade and Humira right? So then switching to a different class of biologic may be what he needs.

My kiddo has severe arthritis. She tried 4 anti-TNFs for her arthritis, though only the 1st one worked well. The second one worked, but not as well. It was downhill from there but there were only anti-TNFs out at that point, for her type of arthritis. When a different class of biologics was approved for her arthritis, we switched and it was the best decision we ever made.

I hope he just needs more time, but if not, you have a good option.
 
HI Nelsonshan hope he is doing better. My little girl Lucy is 10 also and we had the same issues with Humira and they switched to stelara which hasn't really worked yet and we have now re introduced Humira. Humira is good for peri anal disease. Big hugs and hope he is feeling better soon.
Polly xx
 
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