Changing Medications

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DanceMom

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Feb 17, 2013
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When I last spoke with A's GI he mentioned switching to Remicade. She's had 7 mtx injections with not much improvement in symptoms. If I knew for sure that Remicade would be her "magic potion" it would make the decision to switch so much easier. But nothing is certain with this disease. There are so many "what ifs" in my mind. What if the mtx just needs more time to work? What if a short course of prednisone would give the mtx the boost it needs to get her to remission? Or maybe EEN would help? Maybe she needs a higher dose of mtx?

How did you all know it was time to switch medications? I want to feel confident in whatever decision we make but right now I just feel sick about it.
 
Has the mtx made any difference? Our GI did tell us that it would take a full 12 weeks to see improvement but I would imagine some might be seen a little earlier.

Has she had any blood results lately? How are they trending? Fecal Cal test?

Sorry I am not much help. We didn't change meds but did add. I knew it was time because our GI told us it was and he was emphatic about it. We have a good relationship and he was very patient so when he said NOW I knew I had to listen.

I would guess that your GI is probably just concerned about the length of time it is taking to get her on her way from when he first saw her to now and he is probably just going with the med that has the most success.

Remicade isn't as awful as we all fear. You can try it and if it doesn't work you could always come back to mtx.
 
We have changed meds many many times with both my girls. It's a very hard decision to make. I still wonder if we were too hasty about switching from Remicade to Humira for M but her rheumatologist said she would need knee/hip replacements if we let her go on like that.
That made the decision for me. I think in our case we change meds when life is no longer live-able on the current med. In M's case we'd already done a course of steroids right before she switched and once she tapered all the symptoms came back so we knew it wasn't just a flare.
Sorry not sure this is very helpful. In our case the doctors have been pretty aggressive in pushing meds so that helps too. The good thing is you could do pred and then add Remicade if her symptoms come back after you taper, or you could up the dose of mtx and do pred. Lots of options is better than none, though sometimes it doesn't feel like it!
M had to be on at least 15mg of mtx before it worked.
 
The only improvement has been with her joints. She hasn't complained of a single joint pain since her first shot. Her GI symptoms have actually gotten worse - more frequent diarrhea, more blood, more stomachaches, vomiting, etc. Her fecal cal was in the 460s (was previously 20) and ulcers were seen on pill cam that were not there in November.

I know that we need to do something different. I'm just not sure what that "something" is.
 
Has she officially been diagnosed with Crohn's?
You could add Remicade to mtx (and possibly lower the dose of mtx). Many doctors do that now to prevent building antibodies.
 
She was diagnosed with Crohn's last April. That was retracted in November due to clean scopes and other tests and the possibility of Systemic Vasculitis was discussed. She has a follow-up GI appointment next week and I'm hoping to get an accurate diagnosis one way or the other.
 
What a hard decision! I think it took at least 8 wks for the MTX to work for my son, but it sounds like your daughter's symptoms are far from improving, so maybe it's not the drug for her. Thinking of you, and hope your girl starts feeling better soon.
 
{HUGS} to you DanceMom. :ghug:

We have never been in a position of needing to change meds. Matt was ‘on notice’ when diagnosed though, the GI was very pro-active and definite in saying that unless he saw very clear clinical and objective markers of improvement at about the 6 week mark of being on Prednisone and Imuran then he was going to apply to government to have Humira approved.

We had a clear cut diagnosis of Crohn’s and although Matt’s pathology and biopsies from his scope rated it as mild to very mild the GI did not err from this stance. I can only assume that Sarah’s history also played into his decision. As it was Matt developed complications of his Crohn’s within 3 weeks and surgery became our one and only option.

TBH, at the time I was numb with having a second child diagnosed. I did not question it and my overriding thought was that I did not him to go through what Sarah had. As much I was shocked with him saying Humira so soon I doubt I would have objected had it come to that, again because my fear of what happened to Sarah was still too raw.

Dusty. xxx
 
It sounds like she actually needs the MTX for her joints, it's just the question of what to add to it? These decisions for our kids are so tough. What has worked for her Crohn's symptoms in the past? If she is like LJ and nothing has really ever worked then you probably do need to give Remi a try.
Sorry I'm not much help. When we switched it was because the Imuran made him really sick & after 4 months the Humira was not working. I do wonder if we should have given the Humira longer, but the doc said it was time to move him to Remi...so here we are.
Good luck at your appt. Hope you get some more clear cut answers!
 
A started on Pentasa. With that we saw mild improvement so we added Prednisone and later 6mp. The 6mp caused liver toxicity and we were forced to stop it. We weaned the Prednisone around the same time. GI symptoms were mild on Pentasa alone but her joints and skin inflammation were still awful. When the Crohn's diagnosis was retracted we stopped the Pentasa. She was without medication for about 6 weeks before starting the Methotrexate.

I think the main concern is that her symptoms should at least be improving on the mtx (according to the GI) and other than the joints they really aren't. I'm leaning toward adding EEN or Prednisone but neither seem ideal. I just don't want to give up on the mtx too soon.
 
Remember O had to add EEN to her Remicade because it was having a hard time getting her to remission. The EEN worked, however, after a year or so we still had to add the mtx. We added the mtx due to joint pain and psoriasis. It has worked wonders for her joint pain.
 
Would A agree to EEN? If I remember correctly, wasn't she very against it? Our GI always pushes EEN and says she's had very good results with it. M would never do it though.
I hope your GI has some clear suggestions and you get some answers!
A deserves a break from all of this! Good luck!
 
Our GI doesn't seem to push EEN but due to her lack of growth we have discussed it. He seems to prefer the g-tube over the NG tube for doing this. He showed A a doll with a g-tube and she didn't like the idea. She did say she would prefer that over putting something in her nose. Personally, I don't like the idea of surgery and I know she'd be devastated with having to put dance on hold during competition season while she recovers.
 
Our Gi told us 6 weeks for Mtx to work with 8-12 to see full effect.
For DS it did nothing for his symptoms .
Gi added pred at the beginning to give Mtx time to work .
However every time we tried to wean symptoms came back.
We even up Ed the dose from 10 to 15 mg .
His vasculitus in his feet /legs started at the same time.

It is always nervewrecking with every meds change
DS went through them all
Pentasa
6-mp
6mp plus allopurinol
Mtx
Remicade and now humira

There is no crystal ball but you may want to ask the GI what the pros and cons of each would be.
Remicade and Mtx have a lot of the same risks so in the long run
Whatever gets the disease under control and gives her normal again is the key .
It doesn't take the stomach pit away though .

I can say the very drug you stress over to start is the same drug you fear you will have to stop if it starts working.
Biologics have given DS normal that he did not have before despite trying it all.
I hope your GI can help you come up with a good plan .
I also hope she gets some relief soon
I know the last few months have been very hard on her and you .
 
Forgot to mention the stupid fissure started bothering her today. It seems to be a little wider than when I last checked (a little over a week ago). It doesn't seem to be particularly bloody or deep and the GI said it was mild but it is very painful to her. She isn't having formed stools right now and it seems that the diarrhea burns when she goes. I'll have her start soaking in the tub tomorrow. She thought the Cortifoam was torture.
 
Burning bumm can be treated with calmoseptine or any diaper cream prior to having a BM since it protects the skin.
 
That's what we've been doing today MLP but it doesn't seem to be helping. The whole area is bright red and irritated, even to her girly parts.
 
Dermo/gi has had DS use bactroban on the area when the skin gets really bad combined with air is the only thing that heals it but it typically takes a few days .
 
To me there is an enigma here:

Methotrexate has certainly helped the joint pain but has not alleviated the GI symptoms. Is this large joint pain? Knees, ankles etc?
If so then improvement in these type of joints runs parallel to a decrease in GI inflammation.

Methotrexate is generally regarded as a long standing, and in a large number of cases, successful treatment for RA.

If it is large joints we are talking about here then I think it needs to be established if the GI and joint issues are related and if so why is there a worsening of GI symptoms. The other scenario is you are dealing with two different diseases, likely with the same aetiology…inflammatory autoimmune.

Dusty. xxx
 
mlp is right DanceMom, you may find that infection, bacterial or fungal, is underlying the irritation. Barrier creams like Calmoseptine are great but won’t do zot if infection is present.

Do the sitz baths and then apply bactroban or something similar. Also what can help to dry the area after the bath is a hairdryer held at a reasonable distance and on the low setting.

Dusty. xxx
 
A does not have arthritis, just arthralgia. She would complain of pain in her shoulders, knees, wrists, and ankles. There was never redness, swelling, or limited range of motion. Perhaps arthralgia tends to run parallel to GI inflammation but A is anything but textbook. It could also be a coincidence that the joint pain subsided because it was a relatively new symptom for her anyway.
 
I'm sorry you're having to make this decision, DanceMom. I think you've already realized something needs to change/be added, but what? If you trust and have faith in your doctor, then maybe going along with his suggestion might be the way to go, especially if you're struggling to make a decision.

Have you asked A what she wants to do? If you tell her the options are A, B, C... I'm guessing she'd give you an honest opinion.

Hugs to you.
 
As if the journey isn’t hard enough when the picture is clear on what you are dealing with. My heart goes out to you DanceMom knowing that nothing is falling easily into place. :ghug:

I hope that you soon find the answers you need and A finds long and lasting relief. She is such a trooper and must fair make your heart sing. :heart:

Dusty. xxx
 
Sorry you are going through this. Remicade might be the answer though especially if she has a fissure as from what I have heard it really helps heal fissures. Good luck with whatever you decide and keep us posted!
 
Sorry you are having to make these decisions. Sounds like she definitely needs something more. Some of the GI's seem to use Remicade and Methotrexate together, so couldn't you just keep going with the Methotrexate to keep the joints pain free and add the Remicade for the GI issues? I would get them to do a swab of her bottom to check for infection and fungal issues. Then you could get a cream that us tailored to what is wrong. My son was a really sore and red so our GI nurse did a swab. We'd ended up with a specific cream that cleared it up quickly.
 
We've always gone with the GI's direction on when to switch. Mostly, it's clear your child isn't getting better so have to try something else. It's all frustratingly trial and error and lost time.
 

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