H's Brother

Crohn's Disease Forum

Help Support Crohn's Disease Forum:

How is his fecal cal ?
Still on daily miralax ?
A lot of kids who have constipation as part of crohns need daily miralax
Ssri are not recommended for kids (under age 25 ) unless there is mental illness since they increase suicidal thoughts (all have black box warning so to speak )

what other activities are in this time frame ?
Busy with activities sometimes means more car time less home time and faster meals
So less time to “go” right or eat right

more stress from school (first month is review )

lots of factors
And sometimes we have found with Ds
It’s just crohns -others more miralax daily
Whole Foods
And exercise/rest/water ratio
 
It is a great book but as you know; as much as they kept thinking that O had some sort of IBS overlay she didn't and we kept coming back to IBD. Even this last two weeks on the Xifaxan to treat bacterial overgrowth (which isn't necessarily IBS per se but is thought to be the contributing factor of a lot of IBS issues) hasn't helped her. I might rather pull a fecal cal test to see where he is and once IBD inflammation is ruled out then go down the IBS route. Although, changing diet to treat IBS can't hurt him other than delaying discovery of IBD inflammation.

Years ago there was a lot written on the parents forum about how kids seemed to flare up a bit with the start of school and the fall. The thought being stress is a contributing factor. Emotional stress but also stress on the body. As O's GI explained when we were sending her back to school, stress on the body (lack of sleep, running to class, swim practice etc) means that the body switches from healing to maintaining and just keeping up and that jeopardizes a flare. So could be stress that is causing IBS or stress that is causing IBD inflammation...clear as mud.

One good trend I am seeing these days is a huge amount of research on IBS and the fact that the gastro circles are taking it very seriously. There are even gastro psychologists who are studying and treating the brain/gut issues (IBS). I will see if I can pull some of the research and posts of late.
 
I recall discussing Fall flares and something else that came up were allergies?? When S was flaring for the first time and we were still trying to figure out what was going on, he was given Cipro to treat possible stomach bug. He had two doses and had an allergic reaction (hives). He and was given an anti-histamine and told to take it for a couple of days. His crohns symptoms (fever, nausea, etc.) went away for 3+ weeks. That was the longest stretch of being symptom free that he'd had for months.

I suppose it may have been the two doses of cipro??

But, in the past, I do recall reading about some connection to either allergies and/or anti-histamines. Does C have allergies? While it wasn't allergies that triggered S's initial crohns symptoms, it did seem that the treatment for his allergic reaction (anti-histamines) alleviated his Crohn symptoms at the same time??
 
Last edited:
Another thought Tesscorm, is that his immune reaction switched gears to attack the med, and so it calmed the Crohn's for a time.

Sort of a "bait and switch".
 
C doesn't have allergies that we know of.

I have avoided calling the GI as I like to give it a few days to rule out a gastro bug, but I guess today is the day.

I feel better armed with experience and advice this time thanks to the committee. I am going to ask about different types of meds, possibly looking for something that stimulates gut motility better than Miralax. The osmotics don't work too well for him in our experience, at least when he gets like this. He will respond a bit to Senna, but it does cause pain, and I'm not sure if he should take that regularly.

I will ask about IBS-C.

I will ask about fcal .

But major focus motility....I think.
 
So he isn’t on daily miralax.?
Ibs c is only when you ruled out crohns
He has crohns with constipation which means
He will have constipation blips similar to other kids diarrhea blips with crohns
It’s not a flare per say but is watched as it can lead to a flare
It’s not ibs-C
 
I did want to add

sometimes the muscles do not work properly to produce a bm (if he has this issue consistently ) then they can do more invasive testing to determine treatment

in Ds case his constipation gets worse
Spasms the gut causing pain /constipation even with miralax
Tends to be mild rectal inflammation/prolapse of sorts
Fecal cal tends to be normal since just the rectum is affected
Uceris foam has fixed the issue in the past but it takes a few months
 
My kiddo has horrible motility pretty much everywhere and add that to pain medications and there is no way she'd go without a laxative. Miralax works most of the time, but sometimes when things are really bad, we go to Milk of Magnesia. It is NOT a stimulant, it's also osmotic. But in our experience, it works much more quickly and better than Miralax. M has no cramping with it, like she has with Senna or Dulcolax. Her pediatric GI recommended it.

Generally they do not recommend long-term stimulant laxatives, because you essentially become dependent on them. Which is why Miralax and Milk of Magnesia are typically recommended first.

I would definitely ask if it could be his Crohn's since small bowel Crohn's can cause constipation. Fecal Cal should tell you about that.

If inflammation is ruled out, then you look at motility issues or IBS-C.

If he is dealing with moderate to severe chronic pain, another important specialist to see is a pain psychologist. They are now usually psychologists who work with kiddos with chronic illnesses/chronic pain. Our children's hospitals has 4-5 psychologists that work specifically with GI patients.

In terms of SSRIs, it is true there is an elevated suicide risk if the patient is under like 25. But it's very rare. And untreated depression, anxiety or chronic pain can cause serious issues, so you have to weigh the risks and benefits. There are also specific meds for IBS-C that help you have more regular BMs, but I have no idea if they are used on kids. We haven't ever tried them but that's because generally either Milk of Magnesia or Miralax works for my girl.

My daughter recently developed post-infectious IBS, due to months of C.Diff. We tried the drug crohnsinct mentioned - Xifaxan. M lasted 4 days on it the first time - it caused such bad nausea. She re-tried it several weeks later because she was still having diarrhea and cramping and belly pain, and that time lasted a week. It didn't seem to help her unfortunately.
 
After labs and rectal check at hospital we did an enema, followed by weekly pico-salax starting tomorrow, and daily miralax.

I'll find the Canadian version of milk of magnesia and keep it around for good measure.

The ER doc talked to our GI. Those were the recommendations.
 
Oh poor kiddo - enemas can't be easy at that age. I hope the change in laxatives does the trick. One thing to keep in mind with Milk of Magnesia is that if you take too much, it can cause diarrhea. So start with a small amount.
 
C is 14 now, first year of high school. He has been taking 40mg Humira weekly for some time. His Crohn's is stable and under control. He developed what looks like scalp psoriasis. It is developing pretty fast and he has lost a large patch of hair.

I talked to GI last week and had requested a move to Stelara because in past experience with H she had a similar, less severe, skin issue which cleared when we switched to Stelara.

He wants us to see a dermatologist and try other treatments before dropping Humira. We did do levels testing to see if we can reduce dose. We probably will get those results next week sometime.

Anyway, I know some of you have been down this road. Any advice? This is a kid who doesn't need visible issues on top of all of the invisible ones.
 
YES! Both my girls. O’s was SEVERE! You can try to add methotrexate that helps some people. After that topicals. The scalp is an especially difficult spot to get under control. They make a drug in an oil and it is pretty good. It is Fluocilinone. I hope I spelled it right. Nothing really worked for O but like her Crohn’s her psoriasis was insanely severe.

Neutrogena T Gel shampoo help clear the plaques and reduce itch.

There are three OTC non drug things we used with a little success. Hannah Sillstoe has a whole line and the name of the other two escapes me but I will look when I get home.

Diet helps. Clean, non processed, low sugar, low caffeine, no alcohol.

Omega 3 supplements, vit D, ginger but check with your physicians first. These were suggested by O’s derm with GI approval.
 
I'm shocked at how quickly the lesions are spreading plus the hair loss. Fortunately he was a little shaggy looking when it started and can cover it up still.

I bought the Tgel and he's starting that twice weekly. Plus I had some Tacrolimus ointment leftover from H and am using it on him until we can see the derm.

Good advice on diet. He eats like a teenage boy. All sugar, salt, and fats.
 
My younger daughter has nail psoriasis and developed plaque psoriasis on her ear this year. She is on Remicade and MTX and Otezla (which is a medication for psoriatic arthritis and actually psoriasis). Her rheumatologist prescribed a hydrocortisone cream and that cleared it up. Hers was pretty mild. She's been referred to a dermatologist (of course, now the psoriasis is gone, so not sure if she'll go, though she does have pictures).

My husband developed psoriasis too - on his scalp, his chest, ears and face - while on Simponi. He used Neutrogena T gel shampoo and that helped some. He stopped Simponi in January (without telling his rheumatologist) and his psoriasis miraculously cleared up. His rheumatologist wants him back on Simponi even though now it's pretty clear it's anti-TNF induced psoriasis - he says they will treat it topically, so that my husband does not lose a treatment option. But he did say that my husband could switch to a biologic with a different mechanism if the psoriasis becomes too bad.

I bought the Tgel and he's starting that twice weekly. Plus I had some Tacrolimus ointment leftover from H and am using it on him until we can see the derm.
Click to expand...
Honestly, I would be concerned about using Tacro ointment before you see the derm. The derm should really see the psoriasis and determine how bad it is. If you use something that'll help clear it up, the dermatologist can't really assess whether it's severe enough to warrant switching to Stelara.
How long does he have to wait to see the dermatologist?

If you are going to use Tacro, then I would take pictures of the psoriasis to show the doctor.
 
Did H use the taco on her scalp? The reason I ask is oddly, the dermatologist has prescribed different ointments/lotions etc for different parts go the body and been very specific what was not to be used where.

OK so prescription scalp oil is Fluocinolone Acetonide. It is a .01% oil. I also have recently developed pretty bad psoriasis all over and the scalp oil my dermatologist prescribed is Fluocinonide .05%

On their bodies the girls used Triamcinolone and Desonide. Faces, genitals, underarms, breasts were hydrocortisone cream.

The Hannah Sillstoe products are really nice.

The other OTC lotion, scalp oil, shampoo etc that the girls used with some success was DermaZinc. They have one with steroids that is prescription only but one without that they sell OTC and it was still a decent product to use on the off weeks when my girls were not allowed to use the prescription products. We did 2 weeks on 2 weeks off. The scalp oil really help loosen the plaques so you could comb them out or wash them out the next morning.

Derma-E makes a Scalp Relief Treatment that is Tea Tree Oil, Aloe Vera and herbs. It doesn't treat the psoriasis but seriously calms the itch. My girls could use it at night and then again in the morning and it didn't make their hair look icky.

It is hard to tease out whether or not it is anti tnf induced or not. And even when it is, a switch in drug only clears it up about 50% of the time so while a drug switch seems appealing, I would just caution that the disease that does more damage is Crohn's and you really don't want to burn through drug options with no guarantee that the next drug will A) clear up the psoriasis and B) work for the Crohns.

Tessa had moderate scalp psoriasis and severe body psoriasis and it just one day cleared on it's own. I can't remember the last time she used the ointments/creams etc. That said, she just told me the other day that she has a new patch developing on her scalp.

As you know, O struggled for years with her psoriasis. She switched from Remicade to Entyvio to Humira to Xeljanz and nothing treated her psoriasis. As a matter of fact she even did a stint of Tacro while switching drugs once and that didn't even help. However, now on Rinvoq the psoriasis is all gone and we are talking about a kid who people would stare at because she was such a disgusting mess. Her scalp didn't even look human and you could see skin anywhere. It was just think scales and her hair was always full of flakes. At one point her school told her that she was to stay back in class to wipe down her desk and seat so the next students weren't dealing with her skin all over. It was awful. Sorry…you woke up my PTSD.
 
E's first treatment was Remicade + methotrexate, and she never had psoriasis while on the combo. After a year her doctor wanted her to trial dropping mtx, and she developed scalp psoriasis a few months later. We tried different shampoos and steroid ointments, but the only thing that helped was going back on mtx. Once she was back on mtx, the psoriasis completely cleared. I know that's not a great solution, but in E's case, her Crohn's was also better controlled while on combo therapy, so it was worth dealing the side effects. Hope you find something that works.
 
Maya142 said:
My younger daughter has nail psoriasis and developed plaque psoriasis on her ear this year.
Click to expand...

My son started getting pitted nails. His dermatologist said that the psoriasis caused the pitting. Is that the same as your daughter's nail psoriasis?
 
crohnsinct said:
Did H use the taco on her scalp? The reason I ask is oddly, the dermatologist has prescribed different ointments/lotions etc for different parts go the body and been very specific what was not to be used
Click to expand...

No, H didn't use the Tacro on her scalp. Well, sort of. She used it behind her ear. She also had a patch on her leg she treated. I used Tgel on her scalp to keep things somewhat under control but when she was switched from Humira to Stelara the psoriasis cleared up completely, in every spot.

We see the dermatologist on Thursday so I will leave off anymore treatment although I do have photos.

I hate the idea of adding Methotrexate. It's hard enough as it is. These poor kids, all of our kids, who have to suffer so many different indignities and complications. What a terrible story about O. That girl is an absolute rock.
 
Here is the thing about switching drugs. You don't really know if the psoriasis went away because it was anti tnf induced or if the new drug is actually treating the psoriasis better. The only way to know for sure is trial a dose reduction or withdraw the drug and nobody wants to take that chance. Well, except @Maya142 husband;).
 
I wanted to add that if he really can't do methotrexate or if adding methotrexate doesn't help the psoriasis (it didn't help my girls), you could consider adding a second biologic just for the psoriasis. The derm and GI could work together to find one that treats psoriasis that won't make the Crohn's worse. Most of the psoriasis drugs are also used or were used to treat Crohns but are generally not the heavy hitters in the IBD world. So you could keep Humira which seems to be working on his Crohn's and just add something. You don't have to abandon Humira. I know none of us wants double biologics and it is sometimes hard to get it through insurance but it can be done and many of the kids here have done well on double biologics. Remember O was on double for years and at some crazy high doses.

Caution though because there are a few for psoriasis that cause depression so if there is any history, make sure that the term knows before agreeing to adding a psoriasis biologic. The names escape me but one was mentioned for O and that was a side effect and we weren't willing to take that chance.
 
Thank you so much for all the information you have given me. It's good to have a general idea of many options so I am not thinking in only one direction when we have our consult.
 
asadmom said:
My son started getting pitted nails. His dermatologist said that the psoriasis caused the pitting. Is that the same as your daughter's nail psoriasis?
Click to expand...
Yes, she has nail pitting on her fingernails but she also has nail psoriasis on her toe nails. Pitting (and nail psoriasis in general) is strongly associated with psoriatic arthritis, so I would definitely watch for that.

My daughter used to be on two biologics - Remicade and an IL-17 inhibitor (which works very well for psoriasis and psoriatic arthritis/AS but can make IBD worse so it's a definite trade-off) and she stopped the IL-17 inhibitor in January (mostly because insurance was being a pain and partially because her rheumatologist wanted to see if she could manage on one biologic). That's when her psoriasis showed up, but it cleared up very quickly with hydrocortisone cream. We'll see if it returns. She is on MTX and I'm sure that helps.

The only way to know for sure is trial a dose reduction or withdraw the drug and nobody wants to take that chance. Well, except @Maya142 husband;).
Click to expand...
:LOL:My husband was really told off by his rheumatologist for stopping Simponi. He has restarted it. In his case I do think it's anti-TNF induced because his psoriasis just completely went away and it had gotten quite bad on his chest and scalp. But he's only had one dose of Simponi so far and I don't think it has come back just yet. He absolutely refuses MTX, even though it could help.

@crohnsinct Both Otezla and a biologic called Siliq for psoriasis come with a depression risk (and in Siliq's case, several patients committed suicide during the trial). Our rheumatologist (who studies psoriatic arthritis and psoriasis) does not think the drugs are a risk - she thinks it's psoriasis that causes the depression. M does deal with depression but it has not worsened on Otezla.
 
I wanted to add - some of the new biologics for psoriasis are very safe and actually also work for IBD. Skyrizi (Risankizumab) is an IL-23 inhibitor and is supposed to be even better than Stelara for the skin and less of an infection risk. It is approved for both Crohn's and psoriasis (and psoriatic arthritis) in the US. The dosing is much higher for Crohn's than psoriasis. You could try adding something like that, if you're doing two biologics. There are several IL-23 inhibitors approved for psoriasis (but Skyrizi is the only one approved for Crohn's too, others are in trials). There's Tremfya (guselkumab) and Ilumya (tildrakizumab).
 
Maya142 said:
Yes, she has nail pitting on her fingernails but she also has nail psoriasis on her toe nails. Pitting (and nail psoriasis in general) is strongly associated with psoriatic arthritis, so I would definitely watch for that.

My daughter used to be on two biologics - Remicade and an IL-17 inhibitor (which works very well for psoriasis and psoriatic arthritis/AS but can make IBD worse so it's a definite trade-off) and she stopped the IL-17 inhibitor in January (mostly because insurance was being a pain and partially because her rheumatologist wanted to see if she could manage on one biologic). That's when her psoriasis showed up, but it cleared up very quickly with hydrocortisone cream. We'll see if it returns. She is on MTX and I'm sure that helps.


:LOL:My husband was really told off by his rheumatologist for stopping Simponi. He has restarted it. In his case I do think it's anti-TNF induced because his psoriasis just completely went away and it had gotten quite bad on his chest and scalp. But he's only had one dose of Simponi so far and I don't think it has come back just yet. He absolutely refuses MTX, even though it could help.

@crohnsinct Both Otezla and a biologic called Siliq for psoriasis come with a depression risk (and in Siliq's case, several patients committed suicide during the trial). Our rheumatologist (who studies psoriatic arthritis and psoriasis) does not think the drugs are a risk - she thinks it's psoriasis that causes the depression. M does deal with depression but it has not worsened on Otezla.
Click to expand...

Oh, boy, one more thing to worry about. My son is on Stelara. Does Stelara help with psoriatic arthritis?
 
It might. It is approved for psoriatic arthritis but my daughter's rheumatologists (both pediatric and adult) have always said it is not a good drug for arthritis. The anti-TNFs work MUCH better for arthritis. We have consulted rheumatologists all over the country, including at NIH and they uniformly told us Stelara was not a good option. But that is likely because my daughter has sacroiliac joint and spinal arthritis and IL-23 inhibitors do not work for spinal/axial arthritis. We were just hoping to find one biologic that could treat both her diseases but no such luck.

I do know some kids with JIA who have done well on it, but typically they have much milder JIA than both my daughters have.
My younger daughter actually tried an IL-23 inhibitor (not Stelara, but Guselkumab) in addition to Remicade last year, and it was a huge fail. She got so much worse. But she has severe arthritis, so she is far from typical.

I would not worry, but look for swollen, warm and tender joints. Also watch for lower back pain that gets worse with rest and better with movement.
 
Maya142 said:
It might. It is approved for psoriatic arthritis but my daughter's rheumatologists (both pediatric and adult) have always said it is not a good drug for arthritis. The anti-TNFs work MUCH better for arthritis. We have consulted rheumatologists all over the country, including at NIH and they uniformly told us Stelara was not a good option. But that is likely because my daughter has sacroiliac joint and spinal arthritis and IL-23 inhibitors do not work for spinal/axial arthritis. We were just hoping to find one biologic that could treat both her diseases but no such luck.

I do know some kids with JIA who have done well on it, but typically they have much milder JIA than both my daughters have.
My younger daughter actually tried an IL-23 inhibitor (not Stelara, but Guselkumab) in addition to Remicade last year, and it was a huge fail. She got so much worse. But she has severe arthritis, so she is far from typical.

I would not worry, but look for swollen, warm and tender joints. Also watch for lower back pain that gets worse with rest and better with movement.
Click to expand...

Thank you so much! He is only on Stelara at the moment but has had psoriasis on the bottom of his feet and a bit on his palms. The pitted nails are hanging around. I am watching those areas.

Why do you think these things come in bundles like that?
 
Maya142 said:
@crohnsinct Both Otezla and a biologic called Siliq for psoriasis come with a depression risk (and in Siliq's case, several patients committed suicide during the trial). Our rheumatologist (who studies psoriatic arthritis and psoriasis) does not think the drugs are a risk - she thinks it's psoriasis that causes the depression. M does deal with depression but it has not worsened on Otezla.
Click to expand...

I wonder what comes first - the psoriasis, or the depression, or if it works together by inflammatory process. In our situation - the suicidal ideation came first and the scalp psoriasis followed within two weeks although I'm not sure how long it had been brewing because the bit behind his ear preceeded the depression.
 
Does he have plaques on his scalp or just hair loss? Because one of my nieces actually got stress induced alopecia during the pandemic. And my girls have a friend with pretty bad Crohn’s and alopecia that’s autoimmune.
 
asadmom said:
Thank you so much! He is only on Stelara at the moment but has had psoriasis on the bottom of his feet and a bit on his palms. The pitted nails are hanging around. I am watching those areas.

Why do you think these things come in bundles like that?
Click to expand...
All these diseases are genetically related - psoriasis, psoriatic arthritis, IBD, axial and peripheral spondyloarthritis. Do you know if your son is HLA B27+? It’s a gene that’s strongly associated with axial spondyloarthritis/Ankylosing Spondylitis and Enthesitis Related arthritis in kids. It is less strongly associated with the other diseases I mentioned but a large % of people with these diseases have it. It is also a marker for a worse prognosis in AS.

@Pilgrim I’m not sure what comes first but I definitely have read that cytokines are implicated in depression that coexists with these diseases. So I definitely believe there’s an inflammatory component. The same with weight gain in patients with psoriasis who are often overweight or obese - inflammatory pathways have been implicated.
 
Maya142 said:
All these diseases are genetically related - psoriasis, psoriatic arthritis, IBD, axial and peripheral spondyloarthritis. Do you know if your son is HLA B27+? It’s a gene that’s strongly associated with axial spondyloarthritis/Ankylosing Spondylitis and Enthesitis Related arthritis in kids. It is less strongly associated with the other diseases I mentioned but a large % of people with these diseases have it. It is also a marker for a worse prognosis in AS.
Click to expand...

We have done some testing at Mt. Sinai but I didn't look into the specifics. Is HLA B27+ something that the GI doc orders?
 
Maya142 said:
Does he have plaques on his scalp or just hair loss? Because one of my nieces actually got stress induced alopecia during the pandemic. And my girls have a friend with pretty bad Crohn’s and alopecia that’s autoimmune.
Click to expand...
He has plaques. Hair loss where the plaques developed.
 
asadmom said:
We have done some testing at Mt. Sinai but I didn't look into the specifics. Is HLA B27+ something that the GI doc orders?
Click to expand...
A GI could order it. But honestly, unless your child has joint pain, swelling, stiffness etc. it's not really necessary to order it. Just having the gene does not mean you will necessarily develop arthritis.
 
Pilgrim said:
He has plaques. Hair loss where the plaques developed.
Click to expand...
I'm so sorry he has one more thing to deal with. Let us know how the appt. with the dermatologist goes. Will be keeping my fingers and toes crossed that they can figure out something that can help him.
 
We ended up seeing a relatively new Dermatologist who was not a pediatric derm. She said it is definitely psoriasis and also a fungal issue along with that. She didn't think anyone could get psoriasis as a drug side effect. So did not think Humira was an issue.

She suggested we use Nizoral 2-3 times weekly and maybe alternate with T-Sal or T-gel. She said he could use protopic (the Tacrolimus ointment) as well.

So, that was it and she referred him to a pediatric specialist for follow up in 4-6 weeks.

She didn't really answer my question on the time frame for hair regrowth once it's under control.

I'm grateful we see the pediatric derm for follow up - that one is excellent.
 
Well, I'm glad you'll be seeing a pediatric derm - that's insane that she doesn't know that patients can develop psoriasis on anti-TNFs!! I hope the Nizoral and the other topical treatments will help quickly.

How's your son doing? It must have been a very frustrating appointment for him.
 
@Maya142 You are very insightful. He seemed fine during the appointment, slept on the way back, ate, worked out, seemed fine when I said goodnight. Then he had a serious depressive episode in the middle of the night which he said he didn't understand where it came from.

I think he is very frustrated and very sad.
 
Oh poor kiddo!! The teen years can be very rough. He's seeing psychologist, right? In my daughter's case, she needed weekly appointments with her psychologist and medication (SSRIs) to help her.
 
He sees a therapist weekly now and a psychiatrist every month or so plus SSRI'S. It's comforting, in a way, to know other kids have been there.
 
My daughter says to tell him it gets better. She says it is SO hard to feel different from your peers at that age and that it really gets better as you get older. She had to go to school with an NJ tube and she was so afraid to go back to school with a tube that she let her weight drop to 80 lbs before she agreed to one. It ended up being fine - she got a lot of questions, but she never got teased when she explained what it was. And it only got better when she was older and in college - her friends were so supportive. Tell him to hang in there and sending hugs!
 
Is there a Camp Oasis equivalent in Canada? Somewhere he could go to meet other kids with IBD? Meeting other kids with arthritis really helped both my daughters.
 
We do have a similar camp here - Camp Got2Go.
I would be scared to send him on a flight so far away when his mental health is precarious. Maybe in the future.
Tell your daughter I said thank you - hearing that makes more of a difference when it comes from someone who has had experience.
 
Do you know if he’s in remission on Humira? Because if he isn’t, then a switch to Stelara does make sense, if the psoriasis really impacts his mental health.

I also wanted to add that M had severe side effects to MTX as a teenager. She was in bed for 2-3 days every week due to the nausea, vomiting, fatigue and dizziness. We tried like 4 different doses (25 mg, 15 mg, 12.5 mg and 7.5 mg I think) and she got sick even on just 7.5 mg. We also tried doubling her folic acid and adding Leucovorin and at least two different anti-nausea meds. She eventually begged her pediatric rheumatologist to stop it and her doc said yes.

Then as a young adult, she was flaring and pretty desperate so she said she’d try MTX again. She tried it and for whatever reason, she tolerates it now!! She’s on 15 mg (by injection) and she doesn’t even bother taking Zofran the next day or before the shot. I have no idea why she can tolerate it now but she can, with no side effects (thankfully!!).

So just in case C does have to go back on MTX, it’s good to remember that he won’t necessarily respond the same way he did when he was younger. And hopefully, it will clear up his psoriasis.
 
Yeah, as far as I know he's still in remission on Humira and I am still waiting for his levels to come back. They did levels but not fcal.

That is really helpful to know about M's methotrexate experience. Did M take it by injection both times?

C was 9 when we tried it and is 14 now.
 
Bizarre I developed a bit of psoriasis when I started stelara even though it’s supposed to have the opposite effect. A couple of things that helped were calendula cream (neals yard remedies if you can get that brand in the states) and a shampoo called M-folia. Neither got rid entirely but certainly lessened the itch and could use steroid cream less frequently. I tried a lot of different things that were useless. Weleda baby chamomile shampoo and body wash also help a bit.
 
Pilgrim said:
Yeah, as far as I know he's still in remission on Humira and I am still waiting for his levels to come back. They did levels but not fcal.

That is really helpful to know about M's methotrexate experience. Did M take it by injection both times?

C was 9 when we tried it and is 14 now.
Click to expand...
When M started MTX, she was initially on pills. But she then developed mouth sores and was also really struggling with nausea, so her rheumatologist switched her to injectable MTX. She was probably on 12.5 mg when we made the switch. and got up to 25 mg as her max. dose. That dose caused SO many side effects! Now she is back on 15 mg.

I have no clue why she was so miserable then and is fine now. The only big change since she was a teen is her weight. She used to be quite underweight. Now she's a thoroughly normal weight and seems to tolerate most medications better. So I hope that if he goes back to MTX. he has the same experience M had.
 
I'm back. Sorry for the absence. Wanted to add that coconut oil help to loosen the plaques in the scalp. We also heard antidotal reports that it helps soothe the skin and helps calm the psoriasis.

I think I have mentioned diet in the past right? It is hugely important in psoriasis to try to eat a lot of fruits and vegetables and to hydrate….as much as your Crohn's will allow that is.

Also, watch skin injury. For example, scratching or picking at the plaquescan cause injury which will ramp up the inflammatory response and only cause more plaques.

As for hair growing back, the few times we were able to calm O's scalp psoriasis we noticed baby hair growing back pretty quickly. I want to say within a few weeks.
 
Just in hospital getting Stelara infusion for C. His Humira levels were 34, so we moved to bi-weekly from weekly with no help to the psoriasis- and we pushed to switch meds. I'm hoping we see continued Crohn's remission and a big change with the psoriasis.
 
Ugh! I hate that he had to leave an IBD med that was working for him because of stupid psoriasis! I really hope Stelara works on both. It did really well in trials for psoriasis and is the wonder drug.

Did the GI mention any help while he transitions to Stelara given it takes awhile to kick in? Both of my girls are moving to skyrizi and they will both likely go on entocort for a bit while waiting for skyrizi to take hold.
 
Our GI told us in no uncertain terms that he didn't agree with our decision to switch medications but he did sign off on it. I read some newer research that pointed to a 60% success rate in restarting an anti-tnf so I am leaning a bit heavily on that but hoping it doesn't come to that anytime soon. So our GI would agree with your sentiment. He gave me the "you didn't go to med school for 8 years.." speech, and rightly so. I deserved it. I am grateful he ok'd it on paper. For me the additional mental health challenges necessitated this switch. It really couldn't wait.

C is in a good remission IBD wise and his Humira levels were high when we stopped. We weren't advised to do a bridge med but have an in person follow up end of August so I think he will be watched closely.

The kids often have better health in the summer so hoping the Crohn's just lays low while we sort out psoriasis.
 
Pilgrim said:
Our GI told us in no uncertain terms that he didn't agree with our decision to switch medications but he did sign off on it. I read some newer research that pointed to a 60% success rate in restarting an anti-tnf so I am leaning a bit heavily on that but hoping it doesn't come to that anytime soon. So our GI would agree with your sentiment. He gave me the "you didn't go to med school for 8 years.." speech, and rightly so. I deserved it. I am grateful he ok'd it on paper. For me the additional mental health challenges necessitated this switch. It really couldn't wait.

C is in a good remission IBD wise and his Humira levels were high when we stopped. We weren't advised to do a bridge med but have an in person follow up end of August so I think he will be watched closely.

The kids often have better health in the summer so hoping the Crohn's just lays low while we sort out psoriasis.
Click to expand...
I also got terrible psoriasis about a year into Remicade, interestingly after being taken off azathioprine which I was taking alongside it, especially on my scalp and hands and it was absolutely miserable so I don't blame you for wanting to switch. I tried every other treatment (steroid creams, shots etc.) and nothing helped so my mom and I asked to switch drugs. My GI too made us feel very bad and guilty about the decision which I don't think was right and caused me to switch GI's (there were other poor decisions that my GI made which also contributed to this). Don't feel badly about asking to switch. My new GI put me on Stelara and it was the best decision for both my Crohn's and psoriasis. I haven't had a problem with my psoriasis since and my Crohn's has responded to it better even than Remicade, which is interesting considering it was not my first biologic. Best of luck to your son and hope that Stelara works as well for him as it has for me!
 
Honestly, mental health is really important. So I can understand wanting a switch even when your child is in remission on the med causing psoriasis. And psoriasis is linked to high rates of depression and even suicide, in addition to a higher risk for heart disease and metabolic syndrome, so it has dangers of its own.

If it makes you feel any better, my husband’s rheumatologist flipped out when he stopped Simponi because he had developed psoriasis on it. And his psoriasis cleared right up. He had it on his face, scalp, chest and nails. His rheumatologist put him back on Simponi, and sure enough, the psoriasis is back. So now his rheumatologist is willing to switch biologics - either to a different anti-TNF or to an IL-17 inhibitor. I have no idea what the risks of the psoriasis returning are with trying a different anti-TNF, like Humira. I have to do some research on that front.

But I will also say that M has now been on Remicade 4 separate times. And while it hasn’t always worked for her arthritis (it will help some for her arthritis but not enough), it has always worked for her IBD - she goes into remission. She does need a higher dose and more frequent infusions now - 10 mg/kg every 4 weeks or her IBD flareand I will say that it doesn’t last the full 4 weeks. But this is the FOURTH time and you’re way more likely to build antibodies to Remicade than to Humira.

Both my daughters have also been on Humira more than once. Both responded the second time they were on it - in fact, my older daughter stayed on it for years after re-trying it and it worked really well for her. Her arthritis is not as severe as my younger daughter’s so I think her situation is probably comparable to your son’s.
She did need weekly shots but she also needed weekly shots the first time.

Just out of curiosity, did your GI and/or dermatologist not consider Skyrizi over Stelara? Just because from what I have read, Stelara was the wonder drug for psoriasis until the IL-23 inhibitors like Skyrizi and Tremfya came out. They really work like magic. It also seems like GIs seem to be using Skyrizi now over Stelara.
 
Whoa! I in no way agree with your GI. Yes, my view is tainted because I have a kid without a colon now because we ran out of options but that is rare! And the mental health aspect scares the crap out of me way more than Crohn’s. So shame on GI for making you feel guilty. What ever happened to shared decision making? They are just supposed to lay out the facts. Risks, rewards, percentages etc.

Add to it there are new drugs coming along all the time. So hopefully if Stelara doesn’t work another one will. Just be prepared though because about 50% of patients who get tnf induced psoriasis do t clear by switching meds. Lucky O won the lottery on that one also. But finally Rinvoq worked but now without severe Crohn’s we are not willing to continue it for psoriasis. Just hoping it doesn’t come back and if it dies hoping Skyrizi works. Otherwise, oh well.
 
Also know that there are several IL-23 inhibitors in the pipeline, if Stelara does not work. The good part is that they’re not very immunosuppressive, so in a pinch you could even combine them with other meds. And of course there are JAK inhibitors like Rinvoq.

I hope your son’s psoriasis clears up soon with Stelara and his IBD stays quiet. My husband’s psoriasis cleared up in roughly two or three weeks after stopping Simponi, so hopefully it will be the same for your son.

I’m also really surprised about the way your GI reacted, especially considering the psoriasis was causing serious mental health issues. Being a teen is hard enough and then you had a very visible condition like psoriasis… you’d think he’d have some empathy. He may have gone to med school for 8 years but how often has he sat up all night comforting a despairing teenager?
 
C has been off of Humira for about a month. The Stelara infusion was Monday. His Psoriasis has really progressed this month. I wonder if that means the Humira had been helping him a bit with the psoriasis or if his levels are still high enough from Humira to be aversly affecting him - I understand it could take at least 3 weeks - 3 months to see a difference with Stelara for psoriasis. I just don't know when the Humira is out of his system.
 
In pharmacokinetic studies in healthy adults, the maximum serum concentration of adalimumab was 4.7 ± 1.6 µg/ml, reached in 131 ± 56 h after a single 40-mg subcutaneous dose, with an estimated 64% bioavailability. In RA patients, the mean half-life was approximately 2 weeks (range: 10–20 days) and the trough concentrations for the usual dose of 40 mg every other week was 5 µg/ml, which increased to 8–9 µg/ml for those also treated with methotrexate.[203] Clearance of adalimumab tends to decrease with age, and there are no gender differences in its pharmacokinetics
Click to expand...
 
So at 2 weeks half the medicine is out of his system if he was in every other week injections .
Kids clear meds faster than adults
At 4 weeks it’s too early to tell
Stelara took a long time to work for my kiddo so hopefully he will be ok without a bridge for therapy
Mine was not even on 10 mg of pred while starting Stelera he was miserable
 
Yeah…same thing with O when we finally ditched Remicade. Her psoriasis got worse! Her derm always had a suspicion that she naturally had psoriasis because auto immune conditions run in pairs or trios etc. She felt that perhaps her psoriasis just happened to flare coincidentally with the start of Remicade. So when we dc'd Remicade it wasn't surprising that her psoriasis didn't clear and then on Entyvio she got worse (because Entyvio doesn't treat psoriasis). So, you might be right that Humira was treating it but even if that was right, it wasn't treating it effectively. So hopefully Stelara does the trick. If not, Rinvoq was magic for O!
 
H had psoriasis too, right? Psoriasis and psoriatic arthritis do tend to run in families. It’s very possible that either Humira just “unmasked” it or it’s possible he would have developed it anyway even if he was not on Humira.

M’s Crohn’s was diagnosed when she stopped Humira and went on to Enbrel (which is an anti-TNF that does not work for Crohn’s). But her rheumatologist was suspicious of Crohn’s long before she started Enbrel - in fact, even before she started Humira. She has honestly had symptoms since she was pretty young and by the time she was diagnosed with arthritis, she had lost 14 lbs and had abdominal pain. Her Gi dismissed it because her fecal calprotectin wasn’t high enough (it was about 280) (we later switched GIs when she was diagnosed, years later).

There have been lots of cases of new IBD on Enbrel and the question is always did the Enbrel induce it or what is already there and just became active because Enbrel didn’t treat it? In M’case, I’m pretty sure it’s the latter.

All these diseases share genes - psoriasis, psoriatic arthritis, axial spondyloarthritis and Ankylosing Spondylitis, juvenile spondyloarthritis /psoriatic arthritis/ enthesitis related arthritis and of course IBD. At conferences they often show a Venn diagram with the genes that overlap.

The good news is that both Stelara and Skyrizi work very well for psoriasis. And they work for Crohn’s and psoriatic arthritis. They do not work for any type of arthritis involving the spine, so keep an eye on that - low back pain that gets better with movement and increases with rest. Also of course, any swollen or painful or stiff joints, since in general anti-TNFs work better than Stelara for arthritis.

Is there anything topical you can use for the psoriasis while you’re waiting for Stelara to work? We were told at least 6 months for Stelara, so tell him not to lose hope.
 
H did have a very mild case of psoriasis on her ear, scalp, and leg which disappeared when she was moved to Stelara. It was not diagnosed by a dermatologist, but she saw one not long afterward who from photos said it looked like psoriasis and she wasn't surprised it cleared on Stelara. Anyway yes the genes are there and to be honest H has always had pain in her ankles and wrists so I anticipate some problems at some point there as well.

C sees a very well respected pediatric dermatologist in a few weeks on referral from the first derm he saw. Right now he's using coal tar shampoo and ketoconazole shampoo and head and shoulders on rotation. I think she will want to try something stronger like a steroid shampoo - I hope so.

I'm not going to tell him about the possibility of 6 months until/unless I need to.

I am glad to hear that you both have had good luck with other drugs. Keeping those ideas on hand.
 
Ask the Derma about the fluocinolone oil for the scalp. It works really well, when you use it. Unfortunately, there isn't enough to use every night so you pick and choose your battles. O would use it until her scalp cleared (usually 3-4 nights) and then let it get bad again and start using it again. Also OTC DermaZinc is a really good option for in-between the medicated oil. The girls also both used triamcinolone ointment for their bodies and that works pretty well also.
 
A quick update on C. He ended up having the worst impetigo infection on his scalp that the experienced dermatologist had ever seen. Had been misdiagnosed by the GP and a new derm which led to delayed treatment. Derm stated she sees these things crop up in kids on anti-tnf's at high dose/intervals. Typically the Crohn's kids. Switched him to Stelara, treated the scalp with heavy oral antibiotics and his hair is in the process of regrowth.

Doing well on Stelara, started last spring. Being a stubborn 15 year old is now refusing to submit FCal samples - so we are guaging by symptoms and bloodwork.
 
Glad he is doing better!!! So he never had psoriasis - it was always impetigo?

As for refusing to submit fecal calprotectin samples, could you have his GI talk to him about the importance of submitting samples? My daughter actually listened to her GI - if I said she needed to do something, she rolled her eyes and wasn’t always cooperative. But if her GI told her she needed to do it and explained why, that usually worked. Sometimes it’s best if it’s not coming from mom.

Fecal calprotectin is a lot more accurate than bloodwork, so perhaps the GI can explain that to him. You could also mention that if he doesn’t do FCPs regularly, he may have to do imaging or scopes more often to get a true picture of what’s going on.

Is he still seeing a psychologist regularly? That helped my daughter a lot too.
 
Psoriasis is still an official diagnosis. But his switch to Stelara probably took care of that. The Alopecia was likely caused by the impetigo infection. His hair is regrouping with no new areas cropping up. Fingers crossed!

He is not seeing the psychologist. I wish he would. I think next GI visit will be his first visit on his own (without me in the room the whole time) and I will call ahead to make sure the Fcals are discussed.

Yes, mother is the most irritating person to a 15 year old! Always better coming from anyone else.
 

Similar threads

R
Nearly 4.5 years in with Crohn's.
Replies
2
Views
984
ras96mg
R
M
7 year old in pain not diagnosed
Replies
4
Views
1K
my little penguin
my little penguin
K
Possible Crohn’s disease
Replies
10
Views
1K
musicalwiz
M
C
Jaw swelling,
Replies
9
Views
1K
asadmom
A
P
Our Journey So Far SCD CDED Experiences
Replies
2
Views
1K
Pam.estella
P

Latest posts

Back
Top