Moving on to Humira

Crohn's Disease Forum

Help Support Crohn's Disease Forum:

C had his new rheumatologist appt yesterday. There were lots of blood tests and several xrays.

C has been doing well since the last flare of his wrist.

The doc was concerned about C's fingers as she said there seems to be fluid, one especially.

She wants to move humira to weekly, up his mtx, speak with the GI about adding meloxicam or celebrex. She wants to do these by steps and not all at once.

She said she has only one other IBD patient where the wrists and fingers were involved. The rest of hers have been back/ SI joints down when it's ibd related arthropathy.

It's a lot to take in and process but I'll get there slowly but surely.
 
Clash said:
It's a lot to take in and process but I'll get there slowly but surely.
Click to expand...

I can imagine! But if anyone can do it, it is you! Sounds like the appointment was good though and that you found a doc who has a good handle on things. Fingers crossed that her suggestions work well for him!
 
Wow tHat is a pretty aggressive approach. I am glad it is step by step though. I guess you will see how it goes one by one. Keep us posted. Fingers crossed that he will only need one change and be better!
 
Hugs btdt with Ds
The higher frequency really helped dS
In terms of his joints in his hands
It is a lot at once but realize it can work
 
my little penguin did they call DS's joint pain in his hands something different? This doc said she doesn't get bogged down in naming systems and arthropathy especially pediatric and when IBD is present. She did say at one point she would consider back/SI joints down JSpA but his hands might be considered polyarticular(or a similar word to that).

Oh and if all else fails she may consider a low dose pred burst. C cringed when she mentioned pred so she said she'd shelve it til necessary.
 
Clash,
Let him know a low dose pred burst is not bad at all. Much less side effects when you are only on it for that short time.
 
I think that is just his initial reaction to pred. He'll do it if it's needed.

In fact, I think he feels like he isn't having much joint pain so why all these med changes. I forgot she px'ed physical therapy too. It starts with range of motion and endurance but she wants him to work up to strength training, saying that strong muscles help to hold joints and take work off them or something.

Also, food for thought, she mentioned 3 studies that have shown minor damage reversal with humira(or maybe just biologics, can't remember how she worded it)
 
Grace has that kind, Clash.
Polyarutclar means more than 5 joints involved.
Her Rheumy also doesn't get involved in names but believes Grace is heading towards AS.

As to the treatment, that's also Grace's path.
It's aggressive but needed to try to slow the disease.
Grace already has done 2 low dose pred rounds.
Tell your son they were nothing worry about.
Of course Grace is little and her dose was 5.
Another possibility might be sulfasalazine in low doses.
It's helped Grace and now were backing off of it but will probably be adding something else.
 
She said he was tested for HLA B27 while in the hospital in 2013 and it was negative.

These are the tests she did:
ANA screen with ds DNA Profile
CRP
Stool fecal calprotectin
CBC-diff
CMP
Cyclic citrullinated peptide Ab
ESR
Rheumatoid factor, quantitative
Urinalysis

Imaging
Wrist min 3V BIL
Hand MIN 3V BIL
Pelvis 1 or 2 V

Possible more tests to come
 
DS offically has juvenile polyarticular spondyloarthritis associated with inflammatory bowel disease in his hands which runs independant of his GI flares
There may have been another term in there as well
Typically we just say JSpA

He hasn't had HLA testing done since it wouldn't change treatment

He has had tendonitis and svonitis in his fingers due to JSPA
It also affects his wrists
 
Sorry you're facing this but it does sound like you/he has a great rheumo. That does take a bit of the weight off, knowing she is on top of it! But, I do wish you and C didn't have this added worry. :ghug:

I can't precisely explain the connection to muscles but I do know mucles/ligaments/tendons are causing my husband as much, if not more pain than his arthritic knee right now. Someone else may be able to better explain it but, apparently, inflammation around the joint 'turns off' the muscles around the joint - this then weakens that muscle because it's not being used and, at the same time, puts more pressure on the joint because the muscle isn't carrying any of the workload. This may not be exactly correct but I think it sort of/vaguely explains the muscle / joint relationship. Also, apparently, exercise results in more of the lubrication/fluid in the joint - so while the exercise may hurt at the time, the lubrication it creates will help in the long run.

:ghug:
 
M was diagnosed with juvenile spondyloarthritis (now juvenile AS). She also has fingers involved. Polyarticular generally just means more than 5 joints involved. Sometimes if it's associated with IBD it's called Enteropathic Spondyloarthritis - but honestly, the names don't really matter.

Juvenile idiopathic polyarticular arthritis is a different category of JIA that has different treatment (and behaves more like RA than AS). They used Anti-TNFs for it but also drugs like Actemra and Orencia. I doubt that's what she meant though since C has IBD.

Aggressive treatment is actually a good idea- you certainly don't want his fingers/wrists damaged. Tell C it's like asymptomatic Crohn's - you still need to treat it!

We have done both Mobic and Celebrex - right now M is on Mobic and S is on Celebrex. We had to try a LOT of NSAIDs before we found one M could tolerate. She takes Prevacid too because of the NSAID.

Weekly Humira made a huge difference to M- hope it will to C.
Doing the imaging is a REALLY good idea- you'll have a baseline which can tell you whether things are working or not.
 
Wanted to say that erosions in M's SI joints actually got BETTER when Humira was working. I didn't even know erosions could get better - I thought they were permanent!

Unfortunately, when Humira stopped working things went downhill again but it's good to know that these drugs can really work!
 
Ok between my little penguin and maya142 I think you covered what she was saying. I asked if it was JIA and she said something about that used to be JRA and she was going to check his rheumatoid factor or ANA but that she felt like and hoped we were dealing with IBD related and not JIA? I don't know, I may be way off and like you said Maya142 she was treating it not by name but by activity or something like that.
 
JIA is the new term for JRA. There are 7 types of JIA - enthesitis related arthritis/juvenile spondyloarthritis is one and polyartciular JIA (which can be RF+ or RF-) is another. The reason she's checking for polyarticular JIA is that he has his hands involved which is not that common with JSpA (though honestly I can count 5 kids I know with hand involvement and JSpA).

M's had ANA and RF done when she was diagnosed - I believe both were negative. ANA became positive at some point but that can be caused by Anti-TNFs, so no one paid attention to it really.

Honestly, since he has IBD it doesn't really matter that much because anything they put him on they will want to work for the IBD too. So I would imagine drugs like Actemra (IL-6) and Orenica (T cells) are out. Incidentally, Actemra and Orencia did horribly in trials for AS but very well in trials for RA.

The MRI's also might help - certain kinds of damage/inflammation are specific to JSpA (like enthesitis for example). I believe erosions look different in RA and AS so I would imagine they also look different in polyarticular JIA and JSpA.
 
Ok guys not happy here. I just hots C's lab results back from rheumatologist and C is slightly anemic. HGB was slightly low, 11.2 NNR 12.6 - can't remember 17.7 maybe. He was solidly in normal range last draw.

They have the calprotectin result back to but doc hasn't read it, nurse said she'd call back with it as well today.

I really hate Crohns!
 
Humira takes a while to kick in months
DS labs went a little off for a while
Add in JSpA can cause anemia as well
 
Humira took a really long time to work for my daughter but it did work eventually! Hang in there!
How is C feeling?
 
I think the most concerning is that C had not had anemia since dx and then barely. Also, that this has happened after surgery is more disconcerting as his HGB has been normal. I guess, since surgery, we have been under the assumption all is well, especially since the offending area was removed. The fact that this may imply that his CD is back active is very disheartening more so since even high dose remicade plus mtx injections were unable to completely quell his active disease before surgery.

I have to admit I truly had more faith in remicade than I have had in humira. Hopefully the FC result will give me relief from worry.
 
Hugs
DS never had anemia or low ferritin prior to dx
Only after his arthritis started to show up ( we thought arthralgia )
The more uncontrolled the worse it got
Add in has he been on any abx
They can cause bloodwork to be off as well even weeks afterwards ;)
 
M's low hemoglobin and low ferritin (low enough for iron infusions) have generally been attributed to her AS too. I wouldn't blame Crohn's till you get the FC back, particularly since you know his JSpA just flared.

Humira actually worked better than Remicade for my girls, however, it did take much longer to kick in. And high dose Remicade (20mg/kg) never really worked for M at all. Don't worry too much yet (easier said than done, I know)! Sending hugs.
 
Thanks guys! His joint imaging did look good so there is that!

I just hope she calls back today with the FC result so it won't just nag at me all evening. I put a call into GI but haven't heard back. Although, when C had surgery his FC was low, I think 300 something I'd just like a normal one!
 
Last edited:
In the past, we couldn't find an iron that didn't severely constipate him. But that is why I have a call into the GI.
 
I would feel the same way Clash!

Is he on any NSAID's for arthritic pain? Only ask because those could cause higher FC and even some ulcerations and maybe a little bleeding leading to the anemia.
 
Nope. That is why we were pulling the FC because the new rheumatologist wants him to start an NSAID, think there is a scope before we start NSAID too. GI appt was moved to May 13th(supposed to schedule scope then but these results might change that)
 
M has never had a high FC even though she's been on an NSAID for years - highest was 486. My older daughter, who doesn't have IBD, was tested once and her FC was like 26 or 36 or something.

So, based on our experience, NSAIDs don't always raise FC but it's smart to know what his baseline is before you put him on one.

Glad imaging looked good, that's great news!!
 
Ugh, sending hugs too. :ghug:

My understanding is that HGB can take a long time to recover so, if it was caused by JSpA, it may simply be that his HGB hasn't had time to recover yet. S's was at 107 (10.7??) at dx, our normal is 135-170 and it took two years for S to reach 137, and then another 1.5 years to reach 151! The trend was always up but it just took a LONG time! When you're comparing to his last 'good' result, how long ago was that test?

I hope you've heard from GI by now with his fc result!

Again, lots of hugs... :ghug: :ghug: :ghug:
 
This blood test was a little over 2 weeks ago and due to a new rheumatologist. The previous test was 4.5 -t weeks ago and just regular scheduled humira blood work. So about 2.5 weeks in between maybe.

I realized while looking back C has never had low HGB, before dx his ferritin was low but HGB was low normal. That result is why the GP initially sent us to GI, so before dx.

GI nurse called today, she is going to call rheumatologist and get fc result as well. Hope someone calls me!
 
You could ask for an occult blood stool test to see if he's bleeding. That would be one way to tell if it's JSpA or Crohn's causing the anemia.

Hope you hear from the doc soon!
 
Hey guys just wanted to update:

Rheumatologist nurse just called and C's FC number was 59! Yay so happy! Interstingly, I asked what the stated NNR was and she said 0-120. We dropped the sample at a local labcorp(in the past their stated NNR has always been less than 50) and the results sent to rheumatologist. Just thought I'd pass that along.
 
Whew! :) That's great!

Can't remember - do you have any upcoming apptmts to ask about his HGB? Or are you just going to wait it out a bit?
 
He has an upcoming GI appt in early May and I think there will be a scope dveduled then but not sure now with this FC result.
 
I'm going to ask the GI to run his vitamin levels. We usually do that every 6 months and it hasn't been quite y months but I'm sure he will with the HGB being a bit low.
 
Pilgrim he hadn't had an fc since surgery, that I remember. So not sure. His last fc before surgery was 300, I think.
 
Very amusing! Thanks for sharing!

Pilgrim: I totally feel the same when about when doctors call and all heck is breaking loose and I'm trying to find a quiet spot and take notes (ha! "with a highlighter"!)

Clash: Related to what Pilgrim said: Caremark used to call me fairly often and start their conversations with, "hello. This is Caremark. Can you please verify your daughter's name, address and DOB?" and I'd be like, "HELLO?! Could you ask if this might possibly be a good time for me to talk with you?!" Maybe they have gotten a clue since then (about a year ago. Thankfully, our Remicade nurse was able to get us off that program and now she deals with them.)
 
Okay guys so today is the GI appt.

Blood work 5 weeks ago showed slightly below normal HGB. Fecal cal protection was 59.

I'm going to ask for more blood work to include ferritin as well as normal labs done when using humira and mtx. Also I wanted to check vitamin levels so D, B12, and can I ask for folate as well or is that covered in one of the iron studies?

I assume we may be discussing scopes since we are past six months outside of surgery but then again with the FC result maybe not.
 
Not sure about your question on folate.

Hope all goes well at apptmt and you get some reassurance on his HGB... I wonder if anything else could affect HGB... a growth spurt?? Not suggesting this because I've heard of it, just thinking out loud... wondering if there could be a simple explanation. :ghug:
 
Not sure beyond his JSpA but ibfind it odd that it would affect it when his imaging and all looked so good.

I'm gonna go with growth spurt. I don't care if it's supported by scientific backing or not since it would please me in two ways. One, growth! And two not associated with active disease! Haha I like it! Thanks Tesscorm!

I'm hoping more blood work will give us direction or put it to rest.

I'll update after the appt.

Btw, 2 more weeks and C will be graduating! Oh my!
 
When you say scans Clash, do you mean x-rays or MRI's?
In very early JSpA, even MRI's can be clean though often they will show inflammation (bone marrow edema, enthesitis).

Hope his appt goes well!
 
Xrays then MRIs, she said both looked good, but didn't iterate exactly what they showed. By the time we had them he wasn't having any joint pain though. And none now either.

So height hasn't changed so ....

Waiting on GI now.
 
At lab getting CBC with diff, comp. Metabolic panel, CRP, ferritin serum, iron TIBC, prealbumin, reticulocyte count, SED, b12, folate, D, zinc

Office should call to schedule scope.
 
Well, C graduated with honors this past Friday night! We finally have gotten to the end of that journey. I swear chronic illness and our education system are almost incompatible! I'm so glad we decided to move to a flex school. There was a lot of independent study but still the benefit of structure of the classroom for in service days. It was truly awesome to watch him walk across the stage and into a new chapter in his life.

This Friday is scope day. Life with CD, each accomplishment is topped off with prep! Haha! We'll being going up the day before to stay at a hotel for prep since scope is at 7am.

C's job is going great and he'll be starting college in the fall. We've decided he will stay local. Universities in our state require freshman to live on campus and neither of my kids relished this idea. So, first two years local then last two at a University. C will live at home the first year then he and some friends will live together the second year. Local also allows him to keep his job which is the main reason he chose to stay.

Hopefully, the scope will go well and we'll just keep cruising along. Oh and he still isn't pleased with humira. He says the shots haven't gotten any less painful. He says it's not a big thing, he isn't destroyed by it but he does dread shot day. He didn't realize how good he had it with remicade where he was only reminded, in a non painful way(haha) of his CD every 6 weeks instead of the jarringly painful reminder of CD with humira every other week.

C has picked a few different directions to go with academic interests. He has chosen the studies and majors with an eye on their career flexibility. These selections are of interest to him but he says they also will allow for less stressful careers and flexibility in working environment. He thinks this is sound planning as he not only wants to take into account what interests him but also what careers will provide for him and possibly a family one day while still being aware of the effects CD can have on his life. I'm just like "WOW" I chose classes and majors by what professors had the fewest classes on Fridays so he is way ahead of me!

Anyway, hang in there Moms, the journey is long and arduous but it makes each milestone all the more sweeter!
 
Congratulations C!! :dusty::dusty::dusty:

Would he consider adding lidocaine to Humira? He sounds like my older daughter - she hates the shot, but thinks it's too much work to add lidocaine and would rather just deal with it.
 
We've thought about it. We even discussed with the GI but C said it just sounds like more hassle and he'd rather just use the injector pen. I think it just is what it is, if it became a non compliance issue then I'd push for the lidocaine and syringe but honestly right now I'd be worried he'd forget to put the vials back in fridge!

So I guess he'll just trudge along for now.
 
Oh btw I've been stocking up on sunscreen for quite sometime. So lake days have rolled around and I showed C where all the sunscreen was and to make sure to put it on.

His first time out with the boat this summer he packed his towel, sunscreen, flip flops etc and invited all his buddies. The sunscreen made it on the boat but not onto him and he comes back with sunburn on his back. I lectured him but he didn't his teen shrug. Three days later he is unsoothably itching. Literally driving him crazy so bad he can't sleep.

We go through all the "home remedies" and otc stuff for about a day and half to no avail so I send him to his GP. It's a rash of some sort and requires steroid cream.

Now this may not have been at all related to him being on mtx but, let me tell you, he believes it was(and I'm not saying any different) and he swears by repetitive sunscreen use now. So, I hate that he to learn this way but wow is he compliant now!
 
DS had similar rash issues after being in the sun ( humira/Mtx)
Swimshirts( rash guards ) are a must in addition to sunscreen
 
Congratulations to C! And congratulations to you mama. It sounds like you've got a great boy with a great head on his shoulders!! I only hope I can say the same thing about my own son in a few years. He's turning 12 so we're in the middle of tweendom 😉 all kidding aside, it really puts some hope in my future when I hear about these young adults handling things so well and taking control of their health. I know it is sad that our kids are all forced to do this so young but comforting nonetheless.
 
Congrats C! Yep going the whole sunburn route here luckily his friends just stepped up to nagging him to put it on after 2 sunburns in just a couple of days, 1st time didn't even bring the sunscreen, 2nd time brought the sunscreen but "forgot" to put it on. They went out swimming again today (94 degrees) and apparently his friends nagged him till he put it on. Doesn't help that his friends are both extremely dark and not prone to burning.
Sounds like C has a solid plan moving forward, a little sad that they just can't pick a college and let things fall where they may but have to take into consideration so much more. Jack is looking in state but we have 2 years to go although I'm sure it will be here before I know it.
 
What a great update!!! Loved to read it! :D

Sounds like he's made some great plans!! (I, like you, would've placed much more emphasis on the lack of friday classes! :rof:)

And, yep, BTDT with sunburn... remember S had that horrible burn last year :eek:, three days off work just because of the pain... I think he's learned his lesson re sunscreen now. :)

Lots of congrats to C!!!

:D
 
Reading through the congrats posts made me realize something. I need to thank you guys, this group has been such a source of support. But even more than that I feel at home here. I revel in the successes of S, Jack, O, M, DS, Grace, Sarah and Matt, Sarah and Kerry, Andrew, Caitlyn, and so many others. It's been awesome to have the sounding boards, advice, experiences and laughs to pull me forward through the struggles of having a child with CD.

I truly do wish we could all get together or that there was an ample way for me to show my appreciation for all the support and friendship you guys have shown!
 
:cry: Goodness you brought tears to my eyes, totally agree. I love reading when our kiddos accomplish great things, cry then cheer them on when they are struggling. I love updates on things that are happening in their lives
 
I know, I catch myself bragging about one of our kids accomplishments or worrying about their struggles with family or friends. Inevitably, they ask now who is this and I realize oh yeah you don't know them but they are amazing!
 
OMGosh! Me too Clash! I will say over dinner, "I am so worried about little penguin or Dustykat's Matt" and my family looks at me like I have three heads! I have one forum friend here in CT who I am constantly texting asking about her son's FC numbers and bowel habits and weight.

WE ARE FAMILY!

Oh and btw - nothing says thank-you like a case of wine...if you need my address, just pm me:thumright:
 
:lol: Crohnsinct - wine for everyone!

Clash - so glad C is doing well. I will be waiting to hear all the wonderful things he achieves in college!

So very thankful for this forum - this journey would be a lot lonelier without it.
 
CIC as I was typing I thought to myself CIC or Tesscorm will insist some wine would be thanks enough!

Maybe I'll ship myself with the wine to enjoy the spirits and company!
 
Now we all know the only thing that would actually arrive in the box at CIC house would be you with some bottles to recycle ;)
 
This board is like a little soap opera, only the sad stories are true and there have been many times where my son and I were quite worried about one of you or your kids. I had to pull away for a while..too much sadness.

You all have been so much help to me and saved my son so much suffering, I could never thank you enough! :)

May your kids all live in remission forever more!!!
 
Clash I'm so glad he has a direction in life. Congratulations on raising such a good young man!:medal1:

I feel the same way about this board.:heart:
I just told my hubby yesterday that mlp has now become Mr Chicken....... he looked, he laughed and walked out. He no longer questions me anymore.:biggrin:
 
I hate to think where DS would be right now had I not stumbled upon the board. You guys rock!
 
Me too... I'll never be able to express how much all of you helped me get through the worst of it! :ghug: :ghug:

And, yes, I also tell people (family, friends) about a daughter/son who just did really well in a track meet, or one who swims 2 km in open water oceans or joined the band or got a drivers' license or went to prom, etc., etc.... I used to say 'a friend from my forum'... now I just say 'a friend you haven't met'! ;) People just don't understand the friendships here! :hug:

And... wine! Yep!!! :D Getting together... YEP!!!! :dusty:
 
I will repeat the sentiment! You are all a wealth of knowledge and support, for which I am so very grateful.

Congrats to your young man, Clash! A job well done!
 
Oh, about the itchy sunburn... I once had a sunburn on my back that came with a crazily intense itch. The itch was harder to take than the pain. I was told by a Dr friend that it was actually an allergic reaction to the sun. Who knew?! I can sympathize with your son, Clash.
 
Clash,
Congrats on his graduating!!!!!! Very happy for him!!! glad he has his plans in place as well.
I am so nervous about the sun as well. I gave Caitlyn one of those shirts that protect you from the sun but she hates wearing it. I am glad he said he will be careful from now on. Aloe Vera helps with the sunburn. Good luck with the scopes!
And I agree with everyone this is the most amazing forum and I am so glad for everyone here!!!!! You guys have gotten me through so much you don't even know!!!!
 
Although I don't post a ton, I totally feel the same way! You are such a great group of ladies & I will never forget all of the support & great advice I received from all of you over the past few years. Especially when LJ was so incredibly sick and my hubby was in denial:rof:
 
So tomorrow's the day for the prep then scope on Friday! Please, Please let the GI say everything is looking good at the surgery site and there is no inflammation present anywhere! I think I may explode if he says anything other than that!

I will openly admit I am still mourning the loss of remicade, wth? I mean there has been no symptom difference between when on remi and when on humira. And remicade wasn't able to fully take care of the inflammation. So, I have no idea why I am still so attached.

I keep repeating to the "don't get attached and know when to kick it to the curb" mantra but apparently it is not working yet.
 
Clash it takes a while to grieve over loading a med
I know DS still grieves over remicade and besides the two reactions
It also caused his skin to peel rashes. Etc....

Sending good vibes your way for Friday
Just remember no matter what "it is what it is"
And then move on .
Dwelling on the outcome won't help anyone
 
Ironically, we're still sad that Humira stopped working for M. Even though by the end it wasn't doing anything at all anymore, and the shots were always so painful, when it worked, it really worked!!

Fingers and toes crossed that the scopes look great!!
 
Thanks for the update on your son--I love reading posts like this! Hope the scopes go well tomorrow.

Would you mind telling me a little about your son's high school? It sounds like it worked well for him.
 
Good luck, Clash! I think what's hard too is that Remicade seems to work so well for so many kiddos, so when it doesn't or stops for your child, it's hard not to wonder why. Hang in there!!
 
So guys this is what I know so far. The blood work that was done a few weeks ago, yeah I know I'm lagging on it all but I got locked out of my patient portal among some issue with the results being updated. Anyway, he has low HGB, low hematocrit, all his iron levels are low including I think serum to be alert level. His prealbumin is low and he is once again Vit D deficient. All other vitamin levels were solidly normal.

I wish I could be more specific but I just looked over a printed copy the doc had and didn't get to keep it. I'll pick another one up before I leave.

Weight was lower than norm even with the fact that he didn't remove his shoes this time but really he just did prep yesterday so that can account for some of that.

He back getting scope done now and the doc will go over everything afterward.

pdx, my son used to attend a military prep school, after dx the physical components were just too much so we decided on a local private school that has a few different options. We chose to do independent study and he would test at the school weekly. So he was given a syllabus and would accomplish all the work on his own then go to the school on Thursdays to test with class.
 
Make sure the post scope popsicle goes into those cups and bowls and that will be sure to fix him right up :)

Praying you get some good news from the doc.
 
So the scope went well! The doc said C's colon was pristine, the anamatosis site was beautiful and the ileum beyond looked perfect! He told C he could be a colon and small bowel model if there was a need for such a thing. Lol He said were it not for the JSpA he would consider mtx taper or removal. He mentioned niferex(sp?) and I'll call the office next we for the way forward.

Here are the flagged lows and their NRR on his blood work

HGB 11.0. NRR 12.6-17.7

HCT 34.8 NRR 37.5-51.0

MCV 78 NRR 79-97

MCH 24.8. NRR 26.6-33.0

IRON SERUM 19 NRR 40-155

IRON SATURATION 5 NRR 15-55

FERRITIN, SERUM 4 NRR 16-124

PREALBUMIN 19 NRR 20-40

Oh and his CRP was <0.3 NRR 0.0-4.9
 
What fabulous news! Colon model...LMAO!

But forgive me if I hold my breath waiting for the biopsies...A little PTSD perhaps?

Why would he consider an MTX taper...haven't we all been talking about the immunomodulators extending the useful life of the biologics and keeping antibodies at bay? Clearly the GI doesn't troll around our forum! Not happy he has to stay on the mtx for other reasons but at the same time happy he is staying on it IYKWIM.

In the meanwhile bask in the glow, you all deserve it!
 
Due to the increased risk with immune modulators and young males some GIs start with combo therapy and then taper or come off the immune modulator. I've seen a few others on this forum whose GIs subscribe to this although in the past it has only been mentioned in passing by our GI.

Also, since there are a couple of studies that show no benefit with the mtx + biologic at maintenance this may be playing a role though that is purely speculative on my part.
 
Yeah...interesting. At the girls' appointment this week our GI did a brain dump on the immunomodulators and their use with the anti tnf's. Seems the tide is turning away from aza (cancer risk) and toward mtx...It is apparently just as successful and years ago was the chosen method but for some reason the industry turned to aza. Our GI feels we are going to see a shift back to mtx and that it is just as effective.

I just find the varying approache rather interesting. I have also read that after 6 months some docs like to taper the use of the immunomodulators.

Here is a presentation for your enjoyment;)

https://www.youtube.com/watch?v=MJWBV0Fy_Kw#t=107
 
Yeah, I think the prevailing theory that AZA has a higher risk isn't based completely in fact since mtx hasn't been a goto for CD as long as AZA. I remember our doc saying that when the meds showed promise GIs leaned toward AZA and rheumys leaned toward mtx and that now things were shifting. The studies done were at a time when AZA was the more prevalent choice and yet there were patients that showed mtx carries the risk as well. Maybe studies done now that this shift is in more full swing would reveal even more about such risks.
 
I tend to disagree
Mtx as you point out has been used for years by rheumos
Based on those studies still less risk
 
I agree that mtx has been used with rheumatologists longer but I remember a study someone posted about immune modulators and risk and there being a difference on the rheumatologist side and the CD side. Maybe an article and not a study it has been awhile
 
We have also heard from two GI's (one at chop and one at Mount Sinai) that GI's are starting to use MTX more and Aza less. Rheumatologists definitely prefer MTX - in fact, when we were talking about putting M on Imuran, one rheumatologist told us not to because it could have "fatal" side effects (that was a really helpful comment...I didn't sleep for weeks).

Glad C's scopes looked great! His ferritin is very low - when M's was around that (hers was 2 I believe) and we could not get it up fast enough with iron supplements, she had to have iron infusions. Has his GI said anything about that?
 
I'm going to have to call on Monday, these results were from blood work done in the middle of May so I worry that it's worse. Since this was on the endoscopy level and the GI had a day of kids and scopes ahead of him we didn't discuss this as deeply as I would've liked. He mentioned Niferex. It was hard to communicate because this was after scope and C with all the sedative was filled with questions and comments that kept sidetracking us.

I'm going to call Monday and ask about the niferex and about any other tests.

C is absolutely hilarious with the happy juice! He talked for a straight hour otw home, then just zonked out for 4 hours.
 
Glad the scope went well and hopefully the biopsies will come back as "pristine"! I do wonder about his labs. Did they repeat the labs at the time of the scope?
 
Clash said:
Yeah, I think the prevailing theory that AZA has a higher risk isn't based completely in fact since mtx hasn't been a goto for CD as long as AZA. I remember our doc saying that when the meds showed promise GIs leaned toward AZA and rheumys leaned toward mtx and that now things were shifting. The studies done were at a time when AZA was the more prevalent choice and yet there were patients that showed mtx carries the risk as well. Maybe studies done now that this shift is in more full swing would reveal even more about such risks.
Click to expand...

Generally speaking, AZA is more easily tolerated by most patients.

MTX is rarely tolerable orally, much better by injection but that delivery method is difficult, at best.

I chalk up the use of AZA/6MP over MTX to side effects and delivery.
 

Similar threads

thike1966
Doctors screwed me over
Replies
6
Views
2K
Angry Foodie
Angry Foodie
C
Our SCD Journey
Replies
35
Views
8K
crohnsinct
C
T
New to forum...looking for help
Replies
4
Views
1K
Layla
Layla
H
Humira to Remicade due to treatment symptoms
Replies
1
Views
1K
Azaad1990
A
H
Straight from Humira nurse's mouth
Replies
7
Views
4K
kcindc
K

Latest posts

Back
Top