Stuck ...Mobic limited use?

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my little penguin

my little penguin

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So Rhuemo wants DS to started mobic for his hand/joint pain no more than 3 times a week.:awe:
Still need to call GI on it.:eek2:
I don't think GI will agree but ds needs something for the pain :voodoo:
Rheumo also recommends an increase in frequency in humira .:high five:

Rheumo thinks there is low lying inflammation causing the joint issues......
So now we are stuck :ybatty:
since I doubt both docs will agree.:angry-banghead:
 
Talk about between the devil and the deep blue sea! :( :ghug:

I am so sorry that you are finding yourself in this situation mlp. Do you think the GI will agree to upping the Humira?

The Mobic. If there is still low level inflammation then I don’t imagine the GI will agree. Also Mobic can be harsh on the kidney’s so if it is used it will need to be watched as your lad may already have something going there. That’s right isn’t it?

Dusty. xxx
 
He does have kidney issues.
Gi thinks DS is fine -no inflammation .
Rhuemo doesn't agree .
I forgot about the kidney stuff - ugh which means have to call the kidney doc to get their approval as well.
Should be great trying to get three specialists to agree .
Meanwhile I only have one kid .
 
M takes Mobic everyday. Her Crohn's is pretty mild though so her GI approved it. She also had to do weekly Humira to control the joint pain and inflammation (in her joints).

Can he add something like Sulfasalazine? M takes that -- not sure it's doing much but we only just got up to the full dose (1500mg twice a day). Her rheumatologist said we have to wait 6 weeks or so to know if it's doing anything.
Sorry to hear your son is in this position. I've spent many sleepless nights worrying about the NSAIDs making the M's Crohn's worse but not taking NSAIDs will make her joints worse...
 
DS 's crohn's is considered mild- no ulcers, fistulas, abscesses, or thickening .
Just a few granulomas and microscopic changes .
It's all his EIMs that have caused the problems .
His kidney stuff is just monitoring at this point - so no meds etc..,
He is just sore every.day and he has done everything he can PT wwise.
 
Wow, Grace's doc said NO WAY to Mobic because of her IBD. I mean I'm willing to try anything. My Grace is in horrible pain and he still says NO. Can he use arthritis rubs?
It does have NSAID's but for Grace it doesn't bother her......yet.
 
M is also doing PT -- I think it helps keep her flexible but doesn't really help with the pain.
Methotrexate really helped her joint pain though it made her so nauseous and dizzy that we discontinued it. I know your son didn't do well on it either but just throwing out ideas... this is not a fun situation to be in!
 
Farmwife-- it seems to vary by doctor. We got a second opinion at CHOP a while ago and both GI and rheumatologist agreed that M needs to be on an NSAID.
It took us a while to find one that didn't make her nauseous, we had to go through 5 or 6.

Could you get a second opinion for Grace? Fwiw, we've met several kids with IBD and arthritis, and two out of the three of them take NSAIDs regularly.
 
I think the GI will agree to it but that's pitting the two docs against each other and I'm not at ease with that.............yet. :lol:

Only two Rheumatologist in MI. One is on the "other side" of the state
by Mary ( QueenGothel ) and we all know farmers don't go that way. :rof:

MLP I don't know if the kidney doc and GI will go with it.

I thought your DS had visible damage on his second scopes?
 
Rheumo is not permitting it daily only if the pain is bad and no more than three times a week.
DS can tell when the humira is wearing off typically wed before his shot on Friday .
He gets back to baseline the Sunday after his shot Gi wise as well as EIM.
Not sure what is going to happen - I just know we can't stay where we are at and expect to have different results since that is Einstein's definition of insanity.
 
He has had four scopes - latest one last aug was clean with mild ileitis and proctitis .found microscopically -visually it all looked normal .
Nothing else .

Kidney function is normal - no issues or restrictions - just waiting to determine if he will have an issue as an adult sorta thing.
 
That's exactly like M (except she only had mild ileitis not proctitis). You don't think the GI will agree about increasing the frequency of Humira MLP?
 
The two docs have two very different styles on treating patients - so I don't think that will happen but I have been wrong in the past.
Farmwife I don't put one doc against another -DS has a very large team of specialist who work together on his various stuff.
They talk a lot in the background . Most will not give DS something if the other speciality where it can cause a risk does not agree .
But they do discuss it to figure it out.
I just have to wait and see what is decided . Since I do not hear the discussion - just the final decision.
 
Well, I hope you're very wrong then MLP ;)
Having stiff hands really bothers my daughters because it's so difficult to write/type...
 
Ooops sorry MPL, I was answering Maya's question and that was my reply to her about the pitting docs.


Now what's interesting because I feel Grace's Humira or mtx is wearing off a couple days before hand but Rheumatologist told me that's not how the drugs should work. She said it should cover extra days.
That didn't sound right when she said it.
 
Is she on Humira every two weeks or weekly Farmwife?
Humira every two weeks literally did nothing for M. It took 5 months for her to get better once we increased it to weekly and added methotrexate (this was the first time she was on Humira).
 
MLP did the paraffin wax work?
Would figure splints work for him?
Grace's teacher has Grace do hand rest though out the day. It helps some.


Maya, every two weeks. They won't budge until the three month mark is meant.
Sorry MLP, there's something about hijacking your threads.:ycool:
 
Some GI’s will be prescribe NSAID’s, as they did in Maya’s case. :)

Ultimately, and as we all know, it boils down to quality of life versus risk. If your lad’s QOL is impacted significantly enough by his joint issues then it is very likely worth the risk. After all, he will be closely monitored. I just hope you can get all the docs on the one page. Good luck!

Dusty. xxx
 
Another thought -- rheumatologists always try to get M to try Celebrex because it is apparently easier on the stomach (not sure if this is true though?). She's tried it two separate times and found that it made her nauseous but it might be an option for your son MLP.
Also, M takes Prevacid 30 minutes before she takes Mobic (which is after food) otherwise it tears up her stomach.
 
Mobic and Celebrex are selective COX 2 inhibitors. COX 2 enzymes are located outside the stomach so they reduce inflammation but don’t inhibit the COX 1 enzyme which is primarily in the stomach and protects the lining. COX 1 and 2 inhibitors are the older types of NSAID’s like Naprosyn, Voltaren, Indomethacin and Ibuprofen.

Although when originally released Celebrex, and the now banned Vioxx, were touted as not having any of the GI side effects that he older NSAID’s did. Whilst this is likely true for many people there are still those that suffer with the same GI side effects that the older NSAID’s produce.

Dusty. xxx
 
Your amazing Dusty.

What's the difference between Mobic and Celebrex? Is one better than the other?
 
:redface:

I don’t know that one is any better than other as such but rather what is better for the presenting symptoms and the patients response. If one doesn’t work or isn’t tolerated then move to the other.

Celebrex does tend to treat a wider variety of conditions. Whilst they both treat the pain associated with Arthritis Celebrex is also used for AS and menstrual cramping.

Food has no effect on the efficacy of Mobic whereas Celebrex needs food to enhance its uptake.

With side effects the noticeable difference with Mobic is the renal side effects. With Celebrex an allergy to sulpha means it is a no no.

Dusty. xxx
 
We are using Mobic intermittently for Claire's hands. GI said ok for short periods and it's mildest NSAID.
 
Our GI is okay with NSAIDs when C is doing well but this was before we saw disease progression on this last CT so might be a different story now?
 
MLP (and others in same situation), no advice but just wanted to send hugs - I'm so sorry you find yourself between a rock and a hard place. We all just want our kids to feel good and I just hate that we find ourselves so often choosing from less than ideal choices. :ghug:
 
Funnily enough I think you were the one that suggested Sulfasalazine to me MLP!
Hope the rheumo agrees!
 
So I just looked - DS stopped Asacol HD in Aug of last year- GI and I did not see an increase in any GI symptoms so assumed it was not doing ANYTHING.
I know his hand stiffness started shortly there after- Sept / Oct Time frame:ybatty:...
So ....
Would the asacol be enough to stop joint stiffness ----->?:drink:
Going to call Rhuemo on Monday first thing to remind the doc about the asacol just in case.....
 
Since Mesalamine is a treatment for inflammatory arthritis I don’t think you can rule it out as the key to keeping his joints free of stiffness.

The coincidental time frame seems too coincidental to me.

Dusty. xxx
 
Maybe... When we started to ween off sulfasalazine around here DS ended up with an arthritis flare almost immediately. Originally, when the limb issues started and before we got in to see rheumatology, GI put DS on Pentasa as she said that sometimes it fixes the joint issues. You may have found the solution MLP!
 
Interesting, I've never heard of mesalamine being used for AS!
Fwiw, Pentasa didn't help M at all (we took her off it about a month before we started Sulfasalazine and she didn't get worse) and I'm not sure Sulfasalazine is doing much yet either. She has a pretty aggressive form of arthritis though, so maybe it'll work for your son MLP.
Keep us posted!
 
Maya DS was on humira at the time as well so it may have been the combo . He still had joint pain ( large joints ) not his hands though and not everyday .
 
:rolleyes:Actually I've always thought it was weird how Grace's arthritis got worse after coming off LDN.
Now I've seen two papers on how some are using it for their arthritis.
So it wasn't enough to help her IBD but did help hold back JRA or at least in my unscientific mind it did.
 
We had one doctor push LDN for the arthritis...I couldn't find enough research on it and M's rheumatologist had never used it but I still wonder about that as option since she has tried everything else. That doctor suggested she take it with Humira.
 
So .... DS had blood last night
I haven't even given him any mobic yet thank goodness
Hoping its a blip but really less likely to give him mobic now
Updating both docs Monday .... Ugh
 
Last edited:
So perhaps the rheumatologist is right and it's underline GI inflammation?
Sorry to hear about the blood.
Hugs
 
So sorry to hear -- I hope the doctors come up with something to help both his joint pain and the GI stuff!
 
(((HUGS))) to you and your lad mlp. :ghug:

Good luck with the calls, I hope you are given a plan action and that it settles both issues. Maybe Asacol will be a good starting point??

In my thoughts. :heart:

Dusty. xxx
 
Ugh, that sucks. :(

So even the specialist holds no sway over insurance companies?

Dusty. xxx
 
Pretty much ... If the insurance company decides they will not cover a drug at all for anyone you have to fight a long time to prove its medically necessary.
Its rare for a drug to be removed from the list - asacol HD was one of those drugs .
DS still has some at home but they may be expired by now and not worth trying
 
We actually stopped Pentasa for the same reason -- because insurance wouldn't cover it. Both M's GI and rheumatologist thought Sulfasalazine would be a good substitute and it's much cheaper I think, so our insurance didn't complain.
 
Waiting for the blood work to post. I can see it's done but have to wait for the review etc....
No blood last night
Hands worse today
In limbo until we see if things stay clear ...
 
Blood results are in.....
Normal except eosinphils but its allergy season .
Even crp is his normal below <<0.02
:)
Weird not related to crohn's thing
His glucose numbers are always at the low end of normal ( NRR 70-140)
His values hover around 79 even when he ate lunch including sugary fruit crispy thing plus yogurt etc... 45 minutes before ....
Strange ..
No more blood
FC will be out Friday
Waiting for the Gi to review the results now even though they have been in the system for over two days ..
 
From ages 6 to 12, before eating, glucose levels should be between 5 mmol/l (90 mg/dl) and 10 mmol/l (180 mg/dl) and between 5.5 mmol/l (100 mg/dl) and 10 mmol/l (180 mg/dl) before going to bed. Children age 13 to 19 should expect similar readings as those of adults

Read more at: http://healthiack.com/health/what-is-normal-blood-sugar-level
Click to expand...

Ugh so he is low ....
Grumble grumble
 
Hmmm, I wonder with the pancreas feeding into the duodenum if disease/scarring in the duodenum has any influence on things??

Dusty. xxx
 
His first scope upper egd Gi tested pancreatic function but that was years ago prior to dx.
Something I am going to watch just in case
 
Same for M. We were told by one rheumatologist that there actually have been studies about why many people with AS don't have elevated inflammatory markers (ESR, CRP). I was never able to find any though.
 
It is certainly mentioned about the lack of sensitivity of CRP and ESR to AS but it is difficult to find a reason exactly why. Chapter three of this article does delve into it:

Chapter 3
THE RELATIVE VALUE OF ERYTHROCYTE SEDIMENTATION RATE AND C-REACTIVE PROTEIN IN THE ASSESSMENT OF DISEASE ACTIVITY IN ANKYLOSING SPONDYLITIS

http://arno.unimaas.nl/show.cgi?fid=7541

Dusty. xxx
 
When Nicks doctor increased the dose of Salofalk to 1000mg twice a day for GI issues, all Nicks joint pain went away, it was mild to start with but he hasn't complained for a long while. It wasn't until I read the post that I put two and two together. Very interesting.
I hope things turn around for you and you get some relief soon. Salofalk is relatively inexspensive for us, I am able to buy 500 tabs for 390 Malay so about 70 UK pounds. Perhaps I can start exporting it to you :)
 

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