Moving on to Humira

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Oh man! Hope both your kids are feeling better soon. And sorry about the car, too...
 
Oh that is so crazy!
it can't hurt to go to urgent care and get checked out. Keep us posted on how he is doing.
 
Fever is back now. I'm going to call tomorrow for a GP appt. Weird that it showed up in the evening again, maybe it is connected to the CD. But we need to know I guess before the humira shot.
 
Clash said:
Fever is back now. I'm going to call tomorrow for a GP appt. Weird that it showed up in the evening again, maybe it is connected to the CD. But we need to know I guess before the humira shot.
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It is common for fevers to come in the evenings if they are going to come.
 
In C's case, it has been that with flu, strep, virus etc he'd carry a fever throughout the day and it would get higher toward evening/night. When it was a fever due to CD he'd only have it during the evening, sweat it off during the night then start over the next evening. That's why I wonder if it's CD and C is finally showing symptoms with his flares.
 
M is the same with arthritis and with Crohn's -- fever in the evening. Usually goes up to 100.2 but sometimes higher.

But since he has the cough, I'd get him checked out if he'll agree to go to his GP:ghug:.
 
Yep, definitely going to GP, actually another in the group since ours is out of town but need to ensure we can do the humira shot.
 
Clash, I hope the dr can figure this out and get him some relief fast. He needs to enjoy his last week off from school.

And you need all of this to settle. Enough to deal with already. Sorry about the car.

Good luck.
 
Lucked into an 11am appt. Getting ready to head that way. C woke up with ear pain today so we'll see what the doc says.
 
It's an infection of some sort. Little to no chest involvement. Zpac and something for cough tussalin. No humira or mtx until no fever for 48 hours.

GI nurse called to say she had put in an order for another iron infusion.
 
Oh no, hope he feels better soon with the antibiotics!

Glad they put in another order for an iron infusion - hopefully that will help get his iron up and will help it stay up! M needed 4, I think. Maybe 5.
 
He looked into his ears. C says his ears feel full. Doc saI'd something about sinus infection. He was really vague, talked about some crud going around. Then said he definitely had some type of infection. If he doesnt feel much much better by Thursday then he has to go back. No bloodwork this trip.
 
Just checking we went through something similar for an ear infection that turned mastoiditis
Bloodwork clued us in before he got too bad but no one looked at it till after he was admitted .
If abx don't work in 48 hours go back and insist on bloodwork
Ds went through two sets of abx and fever was gone quickly but he kept getting worse
 
Ok will do, thanks. He didn't have fever again today until a bit ago. I'm hoping this passes quickly!
 
Wow, Clash, you've had so much going on!!!

I hope C is feeling better today and this is quickly gone!

Lots of hugs!!! :ghug: :ghug:
 
Okay guys My Humira is driving me freaking insane. We have the humira nurse that was calling every so often. She called at the most random times and with C's schedule he could never talk to her. He gave permission for the specialty pharmacy and nurse to talk to me. The nurse calling was getting a bit aggravating because she'd want to know symptoms he was having that went along with the tests for active disease. Every time we had to go through the whole he's asymptomatic thing.

Before Christmas I started getting automated calls from the nurse line wanting to speak to C. He was never home when the call came through so I'd have him call back and he'd get no answer or it would say leave a message with your question! He didn't have a question. It stopped for 2 weeks and had now started back at all hours.

GI is supposed to have sent px for moving to weekly and syringe so waiting to hear on that. I appreciate My Humira, for sure, but remistart was soooo much less hassle!
 
We never get calls from my humira
Not sure why your getting calls even when he increased from every two weeks to 10 days to once a week .
Only had to talk to them once
Make sure you get it escalated
When you place the first once a week order the specialty pharmacy will get a rejection from my humira ( they only cover one box every twenty eight days)
But they can't do an escalation until they get a rejection
The escalation is suppose to take three days to process and approve
Will see I get to try it tomorrow
Tried to do it end of last year but since Ds was past oop Max my humira wasn't covering anything and we had to wait for a rejection
 
So My Humira isn't going to cover the weekly humira?

I didn't even think of that. Wow, we haven't paid but five dollars so far. I'm not aware if our px has an out of pocket max right now. I do know there is one with the next contract but it hasn't been ratified and hasn't started yet.
 
They should cover it but you have to have it sent in for an escalation and they have to review it.
We had to do it when Ds switched to every tens days. But our specialty phamacy didn't tell us there was an issue for 2-3 months so we had a very large bill at that point that they suddenly sent to us and weren't going to ship any more meds. Had less than a week to get it all figured out
It was a disaster since the pharmacy waited so long .
 
Make sure you call about it
The phamacy can't send in the claim to my humira until after they ship it.
So you need to follow up closely with the billing sept afterwards and with my humira as well
Very very tricky
 
You know, that reminds me I think the nurse said she was sending it through encompass and we go through cvs specialty pharmacy so I need to call the GI about that as well because last time it delayed everything.
 
These conversations give me so much anxiety!! Both when starting EEN and remicade, it was handled by GI's office and all ran so smoothly. I dread if/when S has to switch. Just the thought of ever changing jobs scares me with the uncertainty of knowing how the transfer will happen from one insurance coverage to another.

People don't realize how much more, beyond the illness, comes with a chronic diagnosis.

Hugs Clash... I hope you can get it sorted out quickly and easily. :ghug:
 
So it was an eventful day. C should've recieved his next shipment (his 1st of weekly humira syringes) last week or first of this week. Nada.

I called the specialty pharmacy and they said that the Co payment assistant program rejected it. I asked was it My humira and they said yeah.

I'm thinking no way we can pay for weekly humira without My Humira (now called humira complete maybe). So I called left message with GI and the my humira nurse.

GI nurse calls back first and says doc is going to get another letter together and they are contacting their Humira advocate because it's probably unaffordable without the assistance program.

Humira nurse calls me back, connects me with pharmacy solutions then Opus who state to have specialty pharmacy call them and let them know it was rejected and they'll issue them an override code.

I call the pharmacy, I'm batted around 4 different times then connected to a most wonderful lady. I explain it to her and she's trying to figure it out. And then she asks "So you just don't want to pay the 20$ copay so you can get it this week?" I said I'll absolutely pay a 20$ copay I just want the humira this week. She's said ohe no problem you'll have it Friday, My Humira just wouldn't pick up the 20$ copay until after the 29th. Well then here's my 20 and send it on!

Btw, this may be nothing but for the last week I've seen an increase in what C eats in a day. He's been on the weekly humira a month so fingers crossed!
 
Keep after opus
Call them every day and the speculate pharmacy billing department
Ask for an escalation they are suppose to take 2-3 days to approve it
Then once they do you won't have it rejected for weekly again
Best last year
I called son many times in the begging of January to the speculate pharmacy
It was escalated and approved by opus within 2 days
Thankfully he is at max dose so won't have to do it again
Good luck
Make sure they email or text when the shipment goes out
I have been told oh it will ship xyz
Only it didn't due to rejection of my humira opus
So stay on billing dept
 
Glad he's eating more!! That's always a good sign!

Is he trying the syringes with Lidocaine now?
 
MLP, I wonder if this will happen again because the pharmacist said she thought it was due to the doc starting C on weekly humira with the shipment he had already recieved when it was biweekly then it was a week before the new script went out.

Opus said theyou had a bad batch of cards a while back that sent out rejection immediately when px changed or insurance changed. They felt they'd corrected the problem for the majority of them but it would be no problem to correct.

I'm assuming the refills will now be monthly (or that is what pharmacist stated) so I'll call again next month to make sure it works.

Maya142, we are supposed to discuss the lidocaine at the appt with GI in the first part of Feb.

Also hell get his labs done this week too. Hoping everything looks better anemia wise!
 
They like to fill every twenty eight days so two boxes every twenty eight days
You can get it shipped up to one week prior to your next shot date
Saves you if there is a glitch in shipping
 
C did his first syringe injection of humira. He said it was still painful but much better than the pen.

Labs were done Friday locally lab quest. I really hope they're available for GI appt Thursday.
 
Maya142, I don't think it was near as bad as the injector pen. I haven't been watching C with the injector pen because that tends to get him worked up but I watched last night and he grimaced a bit at the beginning and said now I can definitely tell it's the med that causes the pain but controlling the rate helps alot. So I'm happy with that! Hopefully, his feeling of dread a couple days before injection will now fade away!
 
These kids/young adults deserve lots of admiration! They really are faced with so much more than the average person and, somehow, they find it in themselves to tackle it! I don't blame him for beginning to dread a couple days before - hope this helps him!
 
It's a tough med psychologically. Sounds like he's working through it.
ETA - my little one still dreads it a yearinto treatment.
 
Has he seen a psychologist ?
A few sessions on CBT can make a huge difference for the dread that comes from humira shots.
Which can be helpful coping skills for other painful processes

The difference was night and day for Ds

Good luck
 
Hopefully, the dread is gone with the intro of syringe. He was happy with how it went.
 
How big is the needle Clash? Was he bothered by it?

I really want my older daughter to switch - she is not a big fan of the pens, but says she doesn't want to see the needle with the syringes. I feel like if it is less painful, she won't care about the needle (she does her own MTX shots and has no issue with the needle!).
 
C uses a very small needle for mtx like 8mm, 31 Guage. The humira needle didn't look to be but maybe half again as long an not much thicker.

C noted it was longer than his mtx needle but only in a casual way but then he hasn't really had needle issues since starting the remicade and mtx.
 
GI appt today.

Ferritin still really low. Bi weekly infusions

He's checking into the lidocaine thing.

C will have a scope in 3 months to see where we stand unless C starts experiencing symptoms then we call.

The labs hadn't been released to the portal by appt time. They were done last Friday but locally, when done by GI lab they post after a day or so. But I'll get them soon enough.

I didn't think about when he gets these biweekly iron infusions when should labs be done so guess I'll ask when the GI nurse calls about the order.

Overall, went well. I really like C's doc he's always ready to help and open to strategies. Just wish we could get this kid into remission!

Hope all is well with everyone.
 
Sending lots of wishes that this gets him into solid remission!!! No one wants to see their child suffer but so disconcerting when they don't show symptoms too! It leaves you so blind as to what's happening. But, I really hope this time, no symptoms means no inflammation! :ghug:
 
I was going to mention a couple of things the GI discussed. He just attended a conference.

First off, this is not verbatim, as my brain is entirely to much mush for that but just a sum up in my words.

Research and treatment of late has come around to focus on levels of biologics as they are seeing that response is strongly tied to that. There is no set level but more nuances for each patient and finding that seems to line everything up for long remissions.

In the med pipeline, a biologic that directs to affect more than one cytokine. There is some excitement about this because it is widely believed that those that are getting partial response to say remicade are doing so because there more than one main driver of their disease process. There are, of course numerous, ones affecting the direction of inflammation but with studies (for remicade) they showed that a majority of patients have tnf as the main driver and blocking it is why most find quick symptom reduction and steady remission. I don't know if this was the actual drug he used or just an example but he said tnf and another cytokine.

The main issue has been that most GIs are concerned with too much immune suppression if they place a patient on two different biologics. The study of this upcoming med could answer those questions and possibly open doors for those who are failing the big guns with only partially response (like C).

If there was anything else it's long gone, I swear my brain never retains all of what we discuss and notes do not help because it's like leap frog from one subject to the next between my questions, his newest conference and C'S interjections! They should offer a glass of wine on the way out...along with a parking validation!
 
Very interesting. Always good to hear of new meds on the way. Wishing remission for your boy!
 
The lidocaine came in today. So we'll start it with this Sunday's shot.

Question. Why would you have to mix it with the humira at all. Why couldn't you just push the lidocaine then do the shot?

Or does lidocaine hurt as an injection too?
 
M has lidocaine injections for her tube changes. She said it hurt - stung - but not as bad as Humira. I don't know if those are exactly the same though. She was also sedated while they did them, but she remembers them hurting.

I'd ask my little penguin - she knows everything!
 
30 gauge, I think. Very very thin - so thin that we were worried they'd break while she was injecting (she actually wanted the thicker needles we'd had earlier back).
 
C'S are 31 guage so I guess even thinner? He started with one in the 20s and he didn't like it. The pharmacist is the one that suggested 31 and I didn't think to question it.
 
Yes, that's thinner. Ours were either 30 or 31, I can't remember. We never had any problems with them - they just looked very delicate! Barely hurt at all. I'm sure he'll be fine and will prefer them to the thicker ones.
 
Lidocaine just numbs the surface of the skin if you inject it separately
It DOES NOT change the ph of the humira and therefore doesn't change the "burning" feeing when it's injected separately.

You need for the two drugs to actually "mix" in the humira syringe in order to change the humira's pH so that the humira burns less.

I know it sounds like a pain to mix but honestly once you get a routine that works for you takes seconds to do
Trust me I tried the inject separately thing as well figuring it was better than humira alone
Nope just extra burning shot ( although not as bad as humira) and still did nothing at all
To affect the humira med burn

Ds uses 27-28 gauge needles to draw up the lidocaine but they are only use to inject the lidocaine back in the humira so never touch his skin
 
Ok time for a blood work update and some tidbits the GI nurse told me about.

C had his blood pulled last Thursday and ferritin levels were improving as was HGB and other weird labs values. So we stay on the same iron infusion course. CRP and SED were normal.

The nurse said the Humira drug rep had come by and Humira is working with a ph change in hopes of making the shots less painful.

Second, another drug rep was by with a lidocaine thingy that when opened to air absorbs to the intramuscular level when placed on skin. She put C at the top of the list for consideration. And when she gets all the literature she'll update us.

Anyway, that's all I have for now. I'm a bit worried that C may have done the labs too soon after having an iron infusion(he had the labs on the off week between infusions) but we'll keep moving ahead with them since he's not in normal limits still.

I have my fingers crossed that the humira is maybe getting the job done and we'll have good scopes to look forward to in June.
 
Very cool about the Lidocaine thing. Also that Humira is trying to make the shot less painful! We'd all love that!

Glad things are getting better - fingers crossed that C's scopes look better too in June!
 
Thanks for sharing--that's great news about possibly making Humira shots less painful. And good to hear that the lab values are going in the right direction.
 
C's scope is today. His last labs showed that the weekly iron infusions were working or at least all his numbers were in normal range. He was moved to monthly iron infusions.

The GI ordered the patches to try with humira. C should do the first one this Sunday.

I'm not sure that this patch is specifically for humira but it is supposed to numb deeper than topicals. GI nurse said to try it and let her know.

I'll update after scope.
 
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I hope it went well today. I'm also interested in the patch. I read on another thread someone tried heat on the area before injecting instead of cold and it worked like a dream - as in no pain.
 
The patch actually has a warming component too.

Scopes went well results were what we figured there is active disease. We wait on biopsies, GI and rheumatologist are going to discuss. GI wants C to start entyvio and may be that he has to also stay on anti tnf for his joints. Follow up in two weeks.

I was expecting the results we got but it still took every thing outta me for today.

I'll let you guys know how the patch goes, it'll be Sunday when he takes the next humira.
 
We might join you soon and put M on two biologics too.

Sending HUGS :ghug: -- I wish scope results had been better.
 
The biopsies will be back next week. The nurse said she'd call with the results even though we have a follow up 2 weeks out.
 
Literally held my breath as I opened this thread!

I am so sorry. I know you were expecting this but it still doesn't make it any easier.

FWIW - my nephew did not respond to anti tnfs but he is doing very well on Entyvio.
 
Big hugs
Always hard to hear even when you are expecting the results
The verbalization of them make them too real
 
So sorry to hear this, but I guess it's good to know what's going on. I really hope you find a treatment that works well for your son!
 
Clash, I'm so sorry that the news wasn't better. :hug: And, I can certainly understand how upsetting to hear, even if you expected it. I'm sending lots of wishes that his GI and rheumi can find a solution that gets him into solid remission. I know his crohns is usually asymptomatic, which helps a bit, but I know you can't be in peace until he is truly in remission. I'm just so sorry he's not there yet.

I hope you get the biopsy results soon so you can move on to the follow-up and decide on a plan moving forward. Lots of hugs! :ghug: :ghug:
 
Gosh Clash, I''m so sorry to hear this...I know how disheartening it is. How is C doing with the news? I do hope the Entyvio is the magic bullet for him and you can both have a little peace of mind.
 
It's hard to say how C deals with it...outta sight outta mind is my best guess. I think it's a product of being asymptomatic.

I just really haven't processed it myself. I'm waiting on a call back from the rheumatologist so I can discuss it all with her. And the the follow up with GI is next Tuesday. He's supposed to have talked with rheumatologist as well.
 
We had C's GI follow up yesterday. In the time between scope and follow up the rheumatologist balked at the idea of two biologics (still trying to discuss with her but through the nurse so it's a waiting game).

Biopsies weren't good, granulomas and micro granulomas throughout, including colon which was visibly clear.

Thanks to Maya142, I went in wanting to discuss stelara instead of entyvio since it doesn't treat JSpA. The GI was very open to it and was going to discuss with a colleague at Janssen. He said he had two patients on stelara and fail but that was at the lower dosing and that the new study arm with higher dosing has shown good results.

I'll update when we hear more.
 
Hate that the biopsies weren't better... I know it didn't come as a complete surprise but still... :ghug:

Have you discussed the stelara with his rheuma? Would she be willing to try it?
 
So sorry to hear about the biopsy reusults. It's so good to go into appointments with some knowledge and suggestions (with help from this forum!!) so you can have more options. Hope you find something that works really soon.
 
I haven't mentioned stelara to the rheumatologist yet as conversations are taking long times since I basically give the nurse questions and concerns then she calls back a few days later with Dr responses.

I don't think that she'd have issue with stelara since it has had some positive results with the arthritis side. I read one study about it and it seems another may be occurring now?
 
I'm just catching up on this and I HATE to hear what has transpired!!

I really hope Stelara will be approved and make a difference. You and C both have my awe, admiration and respect in how you deal with this.
 
Aww...thanks. He's not saying much other than he doesn't think anything is going to work. I think the number of let downs are piling up. But today he called and was upbeat about some work stuff and an upcoming getaway so it made me feel a bit better.
 
Clash,
Sorry to hear. I hope the stelara will work for him. Not helping the joints is the one big downfall of entyvio. Caitlyn still gets a lot of joint pain all the time.
 
A bit delayed in my response :blush: but I can understand his frustration and your worry. :ghug:

S was feeling the same way over the last year, with all those varied issues he's had.... we'd barely have an answer to one question when another would come up. He was getting frustrated, upset, disheartened, etc.

I feel for C (and you)... it broke my heart when S would say it was hard and he was tired of seeing his friends out and enjoying life and he was always saying no because he felt badly or just didn't feel like going out because he was depressed about the latest symptom (or lack of answer).

I don't know how much it helped him but, when he was especially down and expecting 'nothing' from the next test or specialist, I just kept reminding him that life is long and there are periods of not so great times... sometimes they last just a few weeks but sometimes it can be much longer. And, when taken in perspective of an entire lifetime, they are just short periods... Kept reminding him that everyone has these tougher times, whether related to health or other reasons... you just have to remember they will eventually be in the past. Also reminded him that, unfortunately, getting to the final answer takes time and some turns... sometimes you simply can't avoid the time it takes to try and rule things out. :(

Like I said, I don't know if it helped him at all... at the time, it didn't seem to have much of a positive impact (but, you know what boys are like... a positive sign can simply be the lack of an 'eye roll'!) but... there was really nothing more I could do but try to help him be patient until the next apptmt.

I hope things start moving ahead for C!!! Thinking of you both! :ghug:
 

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