Stephen... Remicade now...

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We didn't ask re 'referred pain' specifically but S asked if it could be that he has been compensating for his left shoulder for so long, that it has affected the muscles on his right side. Ortho said usually pain due to compensation would be on the same side. I also mentioned that years ago, S also separated his right shoulder (there were never any other problems with it), so could that be related? He just kind of shrugged and said 'who knows?'... Someone once told me it could be a dislocated rib (subluxation), I asked about this too, doctor said it would have shown up on his cardiac MRI or bonescan. When I mentioned they weren't looking for a rib issue on those tests, he said the radiologist would have seen it anyway. IDK, not sure that is a certainty, especially if the radiologist is busy and looking for something else and I was also told sometimes rub dislocation doesn't always show up?? S's attitude is that no one will ever figure out what's causing the chest pain so, as long as he knows it's not his heart, he'll just live with it. :( I'm not sure where else to go with this... hopefully, it is related to his shoulder and will go away after it's treated.
 
Tess,
The radiolgist would have seen a rib issue. They review everything when they look not just the one thing that was written on the scrip that is how it works. Any unusual findings are noted. I think the chest pain is probably like Caitlyn's rheumo said, an arthritis related to crohn's disease. Unfortunately he said other then getting the crohn's under control there is not much you can do for this. However that being said can you ask the GI for some labs to check inflammation? CRP, SED rate, and a Fecal Calp. I would want to make sure the remade is working.
 
I think you are right about the surgery and the rib pain. The water is too muddy right now. Once you fix the shoulder, then you can assess the rib pain. If it doesn't go away, research it further. Just stinks that you have to wait such a long time to resolve the rib pain.

We actually have the reverse with O. Various hip pain. Ortho and PT have been treating it and resolved most of it but there is one pain that just won't go away. The new thinking is that was the original pain (labral tear or sports hernia) and the other pain that has been treated was due to overcompensation. So for us we found the original pain because of treating the overcompensation pain. Just starting to define what the original pain is.
 
Second the radiologist would have noted it.
They noted a lot of things on DS mre cte and X-rays that were not even the organs being looked at .-which lead to referrals to their specialists to figure out if any of them were a concern


Hope the surgery goes well
Do you have time for a second opinion?
If so would get one
DH was told he needed surgery quickly on his neck
That was 9 years ago
Got a second opinion no surgery needed
Something rise was at the root of the problem
 
Thanks MLP and Kim re the mri readings. I know other indications are often found in MRI images but I always thought that was a matter of luck, didn't realize it was normal course for radiologists to look for indications unrelated to reason of test. :) One more example why it's so helpful to run this stuff by everyone!! Even when not crohns related!! So... hmmm, can we not have all our kids do a full body MRI and be done with all questions! :lol:

My thinking on the second opinion is that I would contact the October ortho and request an apptmt based on the current situation - I'm hoping this recent dislocation and the surgergy dx would bump S up in dates??
 
I would think that would definitely move him up the list and if not we'll then you have your answer anout that doc
 
Totally sympathise with the medical mystery bit, my daughter is not impressed being told to live with pain either. I hope the surgery does the trick for his shoulder. Wish they could figure out the rib pain!
 
So, we had Stephen's follow-up today - we talked about lots of things, only a little bit about crohns! :ywow:

Crohns:
All seems good. As it's been 2+ years since his last MRE (scopes last year), GI ordered an MRI. Also ordered levels test at next infusion. Did mention that it seems S has had a number of infections/abx this year... maybe that's why he ordered levels test??

I asked about TB test (we talked about this recently here) - he doesn't believe it's a necessary on a regular basis - unless we have specific reason for concern.

Shoulder:
Asked where S was having surgery and, when I told him it was in a small town/city, he asked if I knew the surgeon's experience, etc. As I don't, he suggested a second opinion before proceeding with surgery. Said shoulder surgery can be tricky and best bet is with someone who has lots of experience - as I don't know the current orthopedist's experience, he offered to try to get a recommendation for S in Toronto.

Lungs - this is where my worry sits now. S has had a cough/wheezing for a while... started with a cold, didn't quite go away, etc., etc. He went to a walk-in clinic about 3 weeks ago, was told he had bronchitis and given zithromax and a puffer. It helped a bit but, once abx finished, cough worsened again. S went back to clinic and they gave his another prescription for amoxcillin-Clav (sp??) and send him for chest x-ray. X-ray showed an area of opacity but radiologist couldn't say for certain whether it was a true abnormality or a problem with the picture. GI asked him a number of questions about his breathing, about his on/off again chest pain (wondering if it was related to shoulder) and sent him for another chest xray following the apptmt. He wants to compare it to the chest x-ray he had in August for the chest pain and, if we can get the film, wants to have his own radiologist look at the x-ray taken last week.

Needless to say, I want to know what this is asap. :( He said he would have the results from today's x-ray by tomorrow, so I could call in for the results.

But, from S's description, he said he's seen quite a bit of improvement since starting this second round of abx (finishing in two days) and he just played hockey yesterday (yes, his shoulder popped out - and in again :( ) and didn't have any breathing problems.

But, poor S is just so fed up with all this! As you all know, it's been one thing after another for the past year... on top of a very tough school semester, he's just becoming a bit overwhelmed and tired of it all. I tried to remind him, good or bad, school will be done in two months and he'll have a break from it for a few months! I wish he didn't have such a tough semester while dealing with the shoulder and chest pain and now a new worry. Seems like we put one to bed and another pops up! :yfaint:
 
Really sorry to hear that S is dealing with so many things :(. It just sucks!

I definitely agree on the second opinion for the shoulder surgery. I don't mean to scare you, but even routine procedures can be messed up so it's important to find the best surgeon you can - my husband had a hip replacement for his AS that had to be redone. It was a long time ago and his subsequent hip replacements (4 more since then) have gone well but I definitely wish we had gone to a different surgeon for the first one - it would have saved him a lot of pain.

Fwiw - M had a cold that turned into a bad sinus infection this winter - it required two rounds of antibiotics (second round was Amoxicillin). Thankfully, after the Amoxicillin, she got better but it took her a surprisingly long time to recover completely.

Really hope the chest x-ray is nothing - sending HUGS :ghug:!
 
So, so sorry to hear S is having such a hard time. I know it is difficult on you too. It would be nice if answers could come easily and if you could have a break from the treadmill.

Hugs to you, strong mama!
 
What a year--no wonder your son is fed up with it all. Really hope he gets some relief from all of this soon.
 
So with you on the rough year!
Hopefully the cough is nothing and the X-ray. Is okay. Will be waiting to hear your update. Fingers crossed.
 
Sorry to hear he is struggling with everything. Glad the cough seems a bit better but hope the results of x-rats come back quickly. That was good of the consultant to offer to help get a second opinion on the shoulder, one less thing to think about.
 
I really hate that he (and you) keep getting hit with one problem after another. This does have to end eventually but that doesn't make dealing with it now any easier. It sounds like you are getting some good medical care and I hope that leads to some answers and treatments soon.

I worry about him going through so much. Even the strongest person would feel defeated after all of that. I think I missed some signs with my son that his crohns and other health and life issues were taking a toll. Does he have things he enjoys and that build confidence that give him small but regular escapes and "light" in all of this? He needs some wins.

I'm waiting to hear about the progress.
 
We finally got back S's x-ray results yesterday - all clear!!! :dusty: :dusty:

Has been been a grueling couple of weeks! As you can imagine, was so worried about S but, at the same time, my father has been in/out of hospital for 4-5 weeks and things have just worsened week by week. We've been faced with some very difficult decisions regarding his life and ongoing QOL and he'll be having surgery this weekend. And, with my worry re S on top of it, has just been a horrible time.

I'm am soooooooooo relieved re S. What a huge weight gone! And, as tough as it'll be, feel a bit stronger to deal with my father's problems.

So, it's not that I've been ignoring everyone here. once I posted about S :eek:.. just truly have only had a few minutes, here and there, to come on here.
 
What a relief! One less worry. Sorry to hear about your father, hope the the surgery goes okay
 
Glad to hear about the results, but so sorry to hear about your father. Hope everything goes well for him this weekend.
 
So, S had his delayed infusion and all went well. Whew...! :)

Always lots of fun and excitement as your kids take on more of their responsibility... :yfaint:

As you all know, I was worried about the delay (antibodies, reaction, etc.). S and I had talked many times about this, the new date, concerns, reactions to watch for, etc., including at 10am, 2.5 hours before his infusion!... At 3pm, I text him to ask if all had gone well, how was he feeling... he immediately calls 'mom, I forgot to go!!' :ywow: :yfaint: I thought he was teasing me but, nope, just straight out, simply forgot! Started studying and just forgot to go. (Any newbies wondering if you will ever be able to 'forget' about crohns, clearly, once in remission, you do! :lol: Although this doesn't apply to moms!) As you can imagine, I flipped! Worse, it was late Friday afternoon! Told him he was on his own, here's the name/number, figure it out! :ymad: He managed to find another clinic that had an opening on the Monday (coordinator had offered him a closer Tuesday apptmt, he told her he wouldn't be alive by then as his mom would kill him if he didn't find a spot Monday! :lol:) The only saving grace was that I'd forgotten that his last infusion had been delayed 3 days, so this further delay still only put him 6 days late.

But, because Saturdays (his usual day) are hard to book, I had already scheduled all the way through December... which now had to be rescheduled! Which he did... Then, when I asked him to send me the dates and times, he'd forgotten to ask the times, only had the dates! :yfaint: ... :rof: So, which came first? The kid or the helicopter mom?!?!?)

He really is a great kid just... forgetful! :whistleinnocently:

And, all's well in the end. He had his shoulder MRI on Thursday, arranged to get the film for the ortho the very next day! (he was on his best behaviour! :lol:), and has left on holidays with friends for two weeks! (Now I'll only just stress about him being away... ;))

Ortho apptmt two days after he returns so, hopefully, we'll finally make some plans re his shoulder and maybe even get some sort of answer re his chest pains! :thumright:
 
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Ack! My heart is racing just listening to your story! I am impressed that you turned over the responsibility for rescheduling to him, and that he followed through so admirably.
 
That is so funny!!! We fret, and worry and they forget just like that!!!! N did that a few months ago. Just forgot! Luckily the gals at the infusion center got in touch with him and rescheduled his appointment!!! Now I'm back to reminding him.....at least for a little while!
Glad that S is out with friends, enjoying life. Hope the orth stuff goes well and you get some answers!
 
:lol: OMG, I had so much going on... still trying to settle my parents (hire caregivers, reno home for wheelchair, etc.), make sure all was arranged for S's trip (he's staying at a place that my cousin arranged for him, as she only speaks a bit of English, all arrangements had to be thru me), trying to get paperwork set up so I could get his MRI film while he was away, etc., I just reached my limit of what I could take on! :eek:utahere:

We all forget things but, as adults, when it happens, we're stuck fixing it, right? (although, :blush: I did give him the new Saturday dates he should try to book! :lol:)
 
Tess, I'm sure you were SO SO frustrated, but I had to laugh. That is SO typical of young adults.

We are lucky that my older daughter's joints "remind" her within 12 hours if she forgets Humira. I cannot imagine what we'd do if she was completely asymptomatic!!

It's so funny that we always talk about Remicade being the "easier" med due to compliance but never once considered that a forgetful teenager/young adult could easily just not go to the infusion :lol:!!

Glad Stephen got it straightened out ;). I hope this experience was enough of a hassle that he'll make sure not to do it again...of course, with young adults you just never know!
 
Wow!
So great that he stepped up to make it right.
So great that you were able to "let" him make it right.
I so know the state of "reached my limit of what I could take on".
So great that you knew yours.
So glad nothing awful happened.
I am so waiting for the story of when he gets home and says,"I don't know what you worry about so much--re-booking was a breeze!" He may need to find alternative accommodation then!! :ywow:
 
Yep, hoping that 'fixing' it was enough of a hassle this time that he'll understand why it's just worth being on top of things in the first place! :lol: But, it seems the coordinators felt sorry that his mom was 'going to kill him' so they made things easier for him than they would have for me! :lol: Oh well, whatever works!! :lol:

But, yeah, tough to sometimes let them suffer the consequences for their actions when the consequences can be quite severe in these situations! Easy enough to deal with a temporary hassle if you're late with your meds, worse if you cause an ongoing flare or lose the ability to use them completely them because you develop antibodies! Ugh, hard to let go and allow them make that big a mistake.

:arghmatey_ani: They've got us backed into a corner! :lol:
 
I totally agree this letting go nonsense isn't good for moms!! I can just imagine him on the phone saying my mom will kill me if I don't get a quick appt, that made me laugh. They took my son in for his last appt on his own first, I'm still trying to recover. Dreading the move to adults later in the year! Glad it all worked out in the end.
 
Tess,
Sending you a big hug as I am sure you need one after all that! Glad he was able to take care of it on his own. It is so scary letting them grow up.
 
Sascot - the move to the adult GI wasn't difficult. I still go in to every apptmt ;) and ask my questions (at the end).

The only real dfiferences in the apptms with adult vs ped GI...

- the first few visits, I always asked if S or GI wanted to discuss anything in private. I've stopped asking because S always said no... but, I did tell S it was totally fine if he ever wanted to have a private discussion with GI, he's an adult and I'd totally understand if he'd like some privacy to ask questions.
- at our first or second apptmt, I said I was going to leave the room and would they have a quick discussion re alcohol, drugs, etc. I did put both on the spot because I didn't want to give either a chance to say it wasn't necessary! (did this with ped GI too) ;)
- I stay only as an 'observer' as much as possible. I let S answer all GI questions and ask his own questions (although I 'prompt/remind' him before apptmt if there are any issues, ie if remi has any implications re shoulder surgery)
- if I still have any unanswered questions, I only ask at the end.

You may be surprised... sometimes our kids have taken in more than we've realized. S surprised me at some of our earlier apptmts with his questions/comments and use of terminology. :)

- I also spoke with S re giving me authority over his records/contact with GI. I made sure he understood he was giving me access to his med records before he signed the paperwork and he was quite happy to trade off privacy concerns if I was making all the arrangements! :lol: This has helped HUGE as I don't have to remind and wait for S to contact GI office with questions; just works more smoothly with the more routine things (ie things like 'S is on ABX, can he have infusion this week?")
 
We have shoulder surgery date - Aug. 17. Neither ortho nor GI had any concerns re remicade, so we're good with that. As it happens, the surgery will be 3 or 4 days before his infusion so I may just push that infusion out 2 or 3 days - he'll be at the lowest serum level at that point and, in my mind anyway, this lowers even the low risk of infection. ;)

Although I will check if there's any issue with remi and painkillers. Ortho said he would prescribe percocet since he can't have nsaids. But, I don't think it's a problem??

Apparently, the chest pain remains a medical mystery! :) (But, it has been better... maybe it's resolving on its own???)

Remi serum levels will be tested at next infusion. Would be nice if we could lengthen the cyle! :D
 
Shouldn't be an issue - we've used both Oxycodone and Percocet in the past (the difference is that Percocet has Tylenol in it).

Just curious Tess - is this an arthroscopy? We talked about doing an arthroscopy for M's hip and I got two different opinions about biologics - one doc said delay her infusion (she was on Remicade at the time) and the other said to just do it in the middle of an infusion cycle.

Just wondering because we may at some point need to do it for her hip and I would hate to have her delay or stop her biologic...
 
Yes, it will be arthroscopic. But, both his GI and ortho said they had no concerns with remicade and the surgery as arthroscopic has low infection risk.

The doctor who told you to 'delay', were they concerned becauuse surgery would be right after an infusion or were they concerned about her 'next' infusion after surgery?

Although both have told me no worries, it's really for my own peace of mind that I was thinking to delay S's infusion post surgery by a few days. He'll be having the surgery on the Wednesday and his infusion is scheduled for that Saturday.
 
Not sure if this makes a difference but the arthroscopic shoulder surgery requires 3 small incisions... perhaps hip surgery would require more incisions?
 
He said to delay the infusion after the surgery. However, that was an orthopedist (and not a very good one at that -- he would not have done the surgery!) and M's rheumatologist was the one who said there was no issue if it was in the middle of the infusion cycle.

M was also on high dose Remicade (20mg/kg every 4 weeks) and Imuran, which might be why they were a bit more cautious with her.

We'll be seeing her (new) orthopedist soon, I suspect, and I will ask about what his recommendations are if he does think she needs an arthroscopic surgery. She has a labral tear (I can't remember if that was S's problem in his shoulder?).
 
I think a hip arthroscopy is pretty similar -- I think they said two or three small incisions (but I don't really remember - it was a couple years ago when we discussed it in detail).
 
Perhaps it depends on the extensiveness of the surgery? It was actually both orthos (original one near school and new one) plus GI who all said it wasn't a concern. IDK?? But, in any case, I plan on delaying his infusion a few days, won't hhurt and gives a bit of a time after... and he may still be in pain 3 days after surgery, so going and having infusion may be uncomfortable too.
 
Yes, they told us that since it's a minor surgery, infection risk is low. But for a more major surgery - for example, a hip replacement, you'd definitely have to stop biologics.
 
Some basic questions on remi serum test... :)

How long does it usually take to get remicade serum/antibodies test back?

What serum level is hoped for? At what point is it too low or too high?

And, should antibody number be 0 or can it be slightly above 0 without being a concern?

Thanks :)
 
Takes about a week.

Desirable level differs from GI to /GI but I mostly here 4-7. The newer studies and presentations are saying 10. I have a chart from, a study at each level. I will try to post it here.

Yes! I would hope for 0 but low levels are supposedly fine. But IDK at what point the level becomes an issue.
 
Tess just wanted to tell you - I asked M's orthopedist and he says for a hip arthroscopy or for a tendon surgical release (another minor surgery we are considering for M - also done arthroscopically), she wouldn't have to stop her biologic or Imuran.

Of course, he says that he'd have to check with her rheumatologist and GI and they would make the final decision, but for a minor surgery, he'd be more worried about her flaring than about an infection.

We are really trying to avoid surgery, so not sure it will happen, but thought it might make you feel a bit better about S's Remicade and upcoming surgery!
 
Thanks CIC and Maya.

CIC, if you have a chance, can you post that chart... I'm curious about the results. S had serum and antibodies tested at last infusion (May 28), so I'd like to know where he stands as far as targeted levels. But, I'll wait until Thursday to start calling about results. :)

I think S's GI was also questioning if serum level is too high?? He commented that S had been on abx a number of times over the past 12 months (that weird rash, bronchitis, etc.) and then said he wanted to test remi levels.

Maya, don't have dates in front of me but I know I checked S's surgery date vs his infusion dates... surgery falls pretty close to mid cycle! I was grateful for that. Although, we were told the same thing as you - by both orthos and his GI. :)

Now, someone should probably shoot me for zeroing in on one little comment but...
more worried about her flaring than about an infection
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...is flaring after surgery a real possibility? :ack: Funny that you mentioned it because this question had crossed my mind just a couple of days ago but I sort of shrugged it off...
 
I actually meant flaring because of stopping the meds -- he said the worry was that we'd stop M's immunomodulator/biologic and then she'd flare and then recovery would be harder.

So it's sort of a tricky situation - don't stop the meds and then there is the infection risk, stop the meds and then there's the possibility that the kiddo will flare.

That said, I have heard of people flaring with surgery anyway...I can tell you M did not flare with her GJ tube surgery at all (and we didn't stop her biologics then).

However, both my girls have had their wisdom teeth out and we stopped their biologics for those surgeries, even though they were very minor (BAD idea!).

BOTH girls flared and were thoroughly miserable. My older daughter actually missed a whole semester of school because of that flare...had to switch biologics.

So I'm definitely more worried about stopping the meds vs. not stopping them.

Will be thinking of S - I'm curious to hear about the Remi levels. Haven't ever heard of them being too high but that makes sense if he's getting infections a lot.
 
Tesscorm said:
Some basic questions on remi serum test... :)

How long does it usually take to get remicade serum/antibodies test back?

What serum level is hoped for? At what point is it too low or too high?

And, should antibody number be 0 or can it be slightly above 0 without being a concern?

Thanks :)
Click to expand...

Our levels tests have taken 10-14 days to come back. I can't remember exactly what range our GI aims for, but when E's levels came back at 1.2 and later 1.7, her doctor increased her dose each time. Last month, her level was 3.9, and her doctor was happy with that number and didn't raise or lower the dose.

E had scalp surgery back in January, mid-infusion cycle. She was on antibiotics for a week after, and she didn't flare or get any infections. She had a few night sweats during the 2 weeks after the surgery, which was worrisome, since that was one of her original Crohn's symptoms, but she didn't have any other symptoms and her inflammatory markers stayed low.

Good luck with everything. Let us know how the levels come back.
 
Maya142 said:
However, both my girls have had their wisdom teeth out and we stopped their biologics for those surgeries, even though they were very minor (BAD)
Click to expand...

Actually surgery within in the mouth is high risk as normal occurring
Bacteria of mouth can enter directly in the bloodstream. Very bad:(:(
 
Glad I didn't know this about mouth surgery when S had his wisdom teeth out! :) Dentist and GI were both fine with doing the surgery mid-cycle, so I didn't worry any more about it... but, I've heard more about dental surgery since then and would've worried more (needlessly) had I known more at the time. Sometimes TMI isn't a good thing! :ybatty:

Maya - thanks, makes sense now, re being off meds and flaring. My father had surgery recently and, while he's recovered from surgery, the trauma of it (physically, mentally, etc.) took a huge toll on him. I guess that's what was in my mind when I was questioning if surgery could have a negative impact on a body and if it could trigger a flare. But, really, arthroscopic is not as invasive and, likely, less traumatic on a body. :)

And, re levels being 'too high' - I don't think I've ever heard of this either but, the conversation went exactly as I posted, so the frequency of abx seemed to be the trigger for the GI to order levels test... to me, seemed to imply he wanted to see if they were too high?? I've always read that being on biologics doesn't increase the number of infections you catch but, perhaps, that S needed repeated treatments to get rid of the rash and some chest colds/bronchitis means he was just having too tough a time getting rid of them??

If it takes 10-14 days as PDX mentioned, then I'll give it a couple of weeks to start asking for results. Hate calling too early because then I just end up badgering nurse for results...
 
Yes Tesscorm...it is a balancing act for the GI's...too high and you leave the patient at a slightly more increased risk of infection...too low and the IBD flares...the trick is finding the sweet spot. So while that chart I am going to post as soon as I can figure out how to copy and post it here will definitely show the higher the levels the greater control over IBD you have, it was primarily concerned with IBD control and doesn't take into account infection risk etc.
 
Thanks CIC.

Found this article... from my understanding, the optimal levels to result in remicade efficacy are a minimum of 0.5 μg/mL remi serum level (no max limit mentioned) and a maximum of 10 U/mL for antibodies.

Article only discussed on levels of efficacy, no mention of infections, etc.

Here's the link

Measurement of Infliximab and Anti-Infliximab Antibody Levels Can Help Distinguish Maintenance Versus Loss of Response
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3317512/
 
b ungar et al (clin gastroenterol hepatol 2016; 14: 550-7) report median serum levels of infliximab (n=78) or adalimumab (n=67) in correlation with mucosal healing.

In this retrospective cross-sectional study of adult patients with ibd (median age ~35 years), the authors found a correlation with higher drug troughs and mucosal healing.

“levels of infliximab above 5 mcg/ml…and levels of adalimumab above 7.1 mcg/ml identified patients with mucosal healing with 85% specificity. Increasing levels of infliximab above 8 mcg/ml produced only minimal increases in the rate of mucosal healing, whereas the association between higher level of adalimumab and increased rate of mucosal healing reached a plateau at 12 mcg/ml”

the authors propose a “therapeutic window” of 6-10 for infliximab and 8-12 for adalimumab.

Clin gastro trough levels
Click to expand...

clin-gastro-trough-levels.png
 
hmmm, just thinking that maybe my wording that remi levels are 'too high' is incorrect. More likely, if GI sees that there is a large enough gap between his current levels and the minimum (0.5), he might consider extending S's cycle (S is on 6 weeks now). So, not really that the level is 'too high' but more a matter that it's higher than it needs to be??

I wouldn't mind stretching it out! :) I know that once you're on remi, etc, the dosage doesn't really have an impact on the level of risk but... logical or not, having fewer infusions would still make me feel better! :lol: And, I know S would prefer few if possible. :)
 
Exactly Tesscorm...That is what happened with O...her levels were higher than they needed to be. Plus she has that Remicade induced psoriasis so lower Remi in the hopes that psoriasis would go down. Also, docs trying to be cost consious...cost benefit and increase QOL...less infusions less interruptions to kids schedule etc.

When O came out high she was at every 6 weeks and we stretched to 7. haven't taken a level yet to see the effect but so far she hasn't gone off the rails so assuming it is good.
 
Got S's results...

Remi serum level at 11.83
Antibodies <2

So, perhaps we will be able to drop his dose/extend infusion cycle. Does anyone know if you can have a dose of less than 5 mg/kg? This is S's current dose, every six weeks. In one of the articles I read, it seemed to imply it is better to drop dosage but maintain frequency to minimize risk of antibody formation?? Any thoughts?

And, anyone know how responsive remi serum levels are to a change in dosage/frequency?

Also got lab results for latest labwork. Couple of the liver numbers were off:

ALT 54 (normal 12-49)
GGT (gamma-glutamyltransferase) 87 (normal 15-73)
AST 33 (within normal range, 0-36) but my chart shows it has been trending up in last 18 mos.

I don't get copies of every test anymore, and it's possible I have a set of results at home that I haven't entered into my spreadsheet but, I would remember if his numbers were off in the last set of results that I've seen.

Now, I know one test result means nothing but... always makes me nerevous when I see 'red' pop up on my screen! :(
 
I know that in RA, they sometimes use 3 mg/kg of Remicade.

I'd guess that decreasing the frequency -- extending infusions to every 8 weeks, might be more common than going lower than 5 mg/kg though.

I have no idea about the liver numbers, but to me, they only look a tiny bit high. I wouldn't worry too much (I know, easier said than done!!).
 
Yeah, not too, too worried about numbers... although, you can bet I'll be asking for a copy of the next labs asap! :lol: Of course, had to start googling... and found one other 'connection', his creatinine levels were a bit off as well - 58 (norm 63-115), didn't mention it above because I didn't think there was a connection... But, again, not going to let myself overthink this... it's only one test result and, as you said, they're only slightly off. (Everything else was normal.)

We'll see what his GI says about remi levels at his next follow-up (Aug. 15). I'm sure S would prefer to extend the cycle... if there's no difference as far as antibodies, etc., I don't have a preference.
 
Just an update (and a record for me ;))... all good at yesterday's GI apptmt.

Crohns-wise, all fine. MRE was good and labs good. The ALT, GGT that were previously slightly elevated are fine now, so just a blip.

Re remi - although S's levels were at 12 and antibodies <2 (good is <5), GI doesn't feel remi level is high enough to extend cycle. Said there's not an absolute 'minimum' level although current thinking is above 8. But, he has patients as high as 20-25, so 12 isn't that high. And, he said it gives a bit of a cushion if he ever needs to delay his infusion by a week. So, we'll be staying at 6 weeks.

And, that was it... short and sweet. :)
 
As I mentioned in S's thread about his shoulder surgery, I have a question about collapsing veins...

S has never had a problem with blood work nor his infusions. But, last week, he had an MRE on Wednesday. He said they had a really tough time finding a vein for the injection and had to poke him 4-5 times, in the arm and hand before they were able to get it to work.

I didn't think anything of it but then it happened again today. He said they had a really tough time putting the IV in and nurses said his veins were collapsing. Again, it took 4-5 pokes, in different locations (nurse said she's never had so much trouble with anyone) before it worked.

I'm not sure which arm was used at the MRE but, today, S said it was the opposite arm from where he normally has his infusion (I'd initially thought scarring).

In both instances, he'd been told not to eat/drink for four hours before procedure so, I suppose it could be a bit of dehydration??? But, everyone would be told not to eat/drink for four hours, so if it was only dehydration, wouldn't this happen to lots of people?

What is a collapsed vein??
 
Dehydration would certainly be the first thought Tess. The next question would be was it just 4 hours before the procedure or longer? Like if the test was in the morning was he actually fasting a lot longer than 4 hours.

Then there is the person taking the blood or inserting the IV. I know I look at Matt’s veins and think, you couldn’t possibly miss those! And yet some phlebotomists are hopeless, they can have a couple of goes on each arm but others get his blood first time every time. We have the labs and phlebotomists down to a fine art! :lol:

A collapsed vein is a vein that becomes blocked. It is a temporary condition due to swelling and inflammation caused by trauma. For some people veins become unusable due to repeated trauma but that is normally the realm of those with chronic drug use or conditions where veins are required for fistula’s, like haemodialysis.
 
You are right, it was more than 4 hours because both were in the morning... :ybatty:

AFter the MRE, S had come home complaining that the person giving him the injection 'didn't know what they were doing!'... and, I assumed he was likely right. When it happened again this morning, it just seemed odd to need 4-5 tries, two occasions in a row. But, yes, in both instances, it was at 9-10am.

He has his next infusion on Monday, so we'll see if there's a problem again...??? He always has the infusion on his left arm but, this time, they'll have to do it on the right (where they had difficulty today) as it was his left shoulder that was operated on. If no problem, then would seem that the problem was dehydration. :)

Thanks Dusty :)
 
Ds had that issue also with his last admit
Three iv sticks ( two collapsed on them )
Plus multiple blood draws that would even with the iv team brought in
In his case he had 4 admissions in two months plus multiple outpatient blood draws
His veins had just had enough
We were also told one of his veins right arm where they always have the remicade infusions
Iv etc was now thick/tough from scar tissue
So something to watch for
They suggest we have them move up or down from on the same vein so they hit a different spot
;)
 
what Dusty and MLP said are both true. Probably a combination of factors caused it. Dehydration and possibly a newer nurse doing it. Also many people have a good arm or a bad arm for blood drawing. It could be this side is not as easy to find a vein on. I have that issue sadly. My right arm which I can no longer get stuck on due to my illness was an easy stick and my left is way more difficult. A great way to build the veins on that side is to lift weights with the bad arm. Maybe he could try doing some weights with that side while his other side heals?
 
A has issues with collapsed/blown veins too (not a dehydration problem). We've started using her hands now, but those veins tend to roll so easily that she can't move much while infusing. It's less than ideal.
 
Thanks everyone. :)

I'll mention changing his remicade location to S. I rarely go to his infusions but, the few times I've gone to pick him up, I've always seen it done on his left side. I'll explain the potential problem and remind him to ask them to, at least, switch arms at each infusion.

DanceMom - yes, they were trying his hands too and having the same problem. Must have been dehydration because it couldn't have been scar tissue in that location.
 
Jae's hematologist recommends hyperinflation prior to any IV stick due to inflammatory reactions of her veins. Maybe when you have to fast, your can supercharge the day before?
 

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