Trialing mobic ..... Maybe adding more meds

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my little penguin

my little penguin

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Rheumo is having DS come in sooner -in few weeks
We are still going to see if the mobic helps first but
Doc wants to talk to us about adding Mtx .

Fingers crossed the mobic takes care of it.
I just need to give it to him first .


Not sure how I feel about adding Mtx to a biologic since his crohn's is "under control" but not his joints .
Plus last go around Mtx only he felt really bad - not sure if it was a side effect of the med or not.

Anyone got the crystal ball -- I really need it .
 
Sending hugs:ghug:
MTX has helped both my daughters immensely but both had a hard time tolerating it (the older is still on it and doing well though it makes her nauseous).

Did you ask about Sulfasalazine? Much more benign although it doesn't seem to be helping M.

If he does have some sort of arthritis you want to get it under control sooner rather than later so that you can prevent joint damage.

Besides a crystal ball I would like a time machine, so I could go back and get the drs to treat my girls more aggressively sooner... perhaps they could have avoided the need for hip replacements.
 
Maya
Rhuemo said sulfanazine was just too weak of a drug compared to humira and was not worth even trying for DS.

Mobic is a NSAID that is suppose to be easier on the gut .
So it has its own risks as well because of the Ibd
 
Yeah sort of wish we hadn't bothered trying it.

If it's just his joints, have you considered Arava (Leflunomide)? M tolerated that better than MTX. It wouldn't help his Crohn's at all though. It's what we'll be trying next I think.
 
Maya
Going to see how the limited mobic use goes first .
And see what the Rheumo wants and reasoning behind Mtx etc...

I know I still have my head in the sand about possible arthritis.
I know its "normal " even for an Ibd kid but....
I can put on sunglasses until its official right .

When I told DS he could try the mobic - he wanted me to give it to him now.

I don't know how he plays ( music) with stiff fingers .
Most of the time he says he pushes through it .

I will keep the Arava in mind ...
 
Poor kiddo, having painful fingers is so hard. Does he have accommodations at school - typing instead of writing if necessary, extra breaks etc.? Those helped my daughters a lot.

We've done both for both girls. Both tolerate the shot better. With M once she was diagnosed with Crohn's, they said she would definitely have to have the shot because she might not absorb the pills. She prefers the shot anyway since it made her less nauseous.

I hear you on having your head in the sand... one chronic illness is more than enough! It's just that you definitely don't want his fingers damaged, can't really replace those joints. I'm sure your rheumatologist will be watching carefully.

15mg helped M (that was our "low dose," the first time she was on 25mg). If we were to try MTX again (although M says she won't) her rheumatologist said we'd try 10mg to see if that helped.
 
He started on 10mg last time by shot and moved up to 15mg ( this was through the Gi though)
Not Rheumo

Rheumo
Always is moving his joints so I know it's covered ;)

If he only had one dx I would be good
He already has 6-8 specialists for the various areas that have different inflammatory disease
Lungs
Skin
Eyes
Gut
Kidneys

Just fun times
 
Your poor boy (and poor Mom who has to coordinate it all!), I hope Mobic is enough to help. I've heard of lower doses of MTX being used, like 7.5mg.
A lower dose of Arava (10mg, the usual adult dose is 20mg) helped M.
 
Might be worth asking if they can check if he's RF+ or HLA-B27+. Or to do imaging to see if his joints or entheses are inflamed.
 
I hope the Mobic works. I've asked her Docs but they refuse so far.
Grace's MTX and Humira was just upped last week. She's going through a stretch of bad tiredness.
I can't tell if it's disease or the upped drugs.

Grace puts her hands in warm water after school.
The bonus...I'm teaching her to do the dishes. It has helped a b

Has he used any arthritis rubs?
 
No knowledge on what you're dealing with :( but just something you might try... just came home from physio for an injured finger - p/t told me to fill a bowl with warm/hot water, add epsom salt and soak my hand for 15 minutes. Said, for finger injury, it's better than a heat pack and the epsom salt (magnesium) will help the injury/inflammation.

Good luck with the mobic - I hope it gives him some relief. :ghug:
 
Glad you are giving it a try - I hope the results are good. We are currently using it at short stints and it's been helpful. Keep us posted! :)

J.
 
Given the mobic twice
In the evening at dinner to lessen the Gi part of it.
He says it helps some but of course doesn't take the stiffness completely away .
Plus I can only give it one more time this week .
Just very frustrated at this point .
He still has trouble touching his toes even .
Add in ulcers are making their way back .

Just not sure if he "bad enough " so to speak to warrent adding Mtx( plus all the side effects).
Like you trade the possible stiffness relief for fatigue /nausea .
It would be different if we were told he definitely has arthritis so meds are needed to stop damage .
I know this is the docs call so I will wait to see how DS trends over the next
Few weeks and discuss it then.

Undx or not knowing the cause is hard .
 
M is only able to tolerate NSAIDs if taken after Prevacid and a meal. Otherwise she gets stomach aches and becomes very nauseous. Prior to adding Prevacid we tried Zantac and that helped but not as much as the Prevacid. We also tried several different NSAIDs before we found one that suited her.

Does he see the rheumatologist soon?

It took several months to diagnose both my girls even though my husband has AS:ybatty:. Hang in there.
 
Did the mtx help his joints when he was on it before? It did nothing for A's joint pain (neither has Elavil) and that surprised me. She has pain and stiffness but no redness or swelling.
 
He was a mess crohn's wise when he was Mtx .
He was also on pred at the same time as Mtx so not a good measure .
His hands were not an issue at that point either .
 
I was just curious. I know mtx is used for arthritis and you said your son was not diagnosed with arthritis (and neither is A). I wish it would have helped her joints but it had no effect.
 
I will let you know what the rhuemo says when we have the appt - the why etc...
He is still on humira so maybe to make the humira work better for the joints - not sure ...
 
Sorry to hear about the ongoing issues.
The Mtx helped with Grace's stiffness/redness/swelling but not the pain.
She still it's has pain and slight swelling with humira and mtx combo.:ymad:
 
With the mtx injections C has noticed a real difference in his lower back pain but the stiffness remains, not as pronounced but there. Also the PT-swimming is probably playing a role along with mtx so not sure which helping the most.
 
The combination of Humira and mtx worked very well for M. Last summer she was Remicade and mtx and that worked great too. The stiffness and pain doesn't ever go away completely, but it's completely manageable when she's on the right combination of meds.

Even the Enbrel + Arava combination worked well for her except that's when the Crohn's flared up because neither of those meds work for Crohn's.

Swimming definitely helps. PT helps a little, but swimming helps more.
 
He swims on the swim team so practice 4/5 days a week.

So that does help his other joints just not the hands so much
 
A has pain in both knees and 1 wrist and stiffness in her back. She has her PT eval next week. I really thought the Elavil may help with the pain but I suppose until the underlying disorder is remedied.....well you know.....
 
How much Humira is he getting? Weekly or every other week?

Both my daughters needed weekly shots to control the arthritis. Our rheumatologist said that was very common. Even with Remicade, the frequency is different - the maximum time between infusions is usually every 6 weeks, but many kids (including my girls) go every 4 weeks.

Yeah, I would imagine swimming wouldn't help his hands so much. Poor kiddo.
 
He is on humira 40 mg every other week...
But it's prescribed by the Gi so since his crohn's is good that med won't change .
We are stuck in dx limbo
 
Limbo is the worst..we're currently there too as two rheumatologists are fighting over whether M has fibromyalgia in addition to the arthritis...
 
Oh man mlp, just breaks my heart to read of all you and your lad are dealing with. And also the other mum’s whose children are having to deal with Arthritis and other co morbidities along with IBD. It sucks so bad. :ghug:

I so hope the Mobic makes some sort of appreciable difference but the reduced regimen is going to make ongoing improvement difficult. :(

My thoughts are with you mlp and just wishing with all my heart that it was easier for you. :heart:

Dusty. xxx
 
I'm sure you hv tried this before with p/t but just in case... Hv they tried u/s and acupuncture? When I had it, I saw a noticeable improvement for abt a week. The extent of the improvement seemed to lessen as time went on (after abt a week, it slowly started to hurt more again??), but the improvement was noticeable after my next apptmt again.

One thing, I felt very light headed and in a fog for the rest of that evening??? Therapist thot it may hv been from the acupuncture since I hadn't eaten dinner yet and my blood pressure is usually a bit on the low side. I made sure to eat bfr last apptmt and I was fine.
 
I am so sorry to hear he is having such trouble with his hands! Caitlyn struggles with joint pain all the time too. This disease really sucks!
 

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