Remicade wearing off fast

[danieldresen]

I don't know what else to do. I am at 6mg every 4 weeks. I can't take 6MP because budesonide caused fatty liver. I am in constant pain and it has only been 2 weeks. What else can I do? Oh, and I have a fear of needles which is why I picked remicade. Fewer injections. What else can I try? Anything for the fistula pain or rectal pain? I want this pain to stop. I can handle intestinal pain, arthritis, mouth sores... but my rump and BMs are the worst!

 

[danieldresen]

Still at a loss... anyone know anything about CBD oil?

 

[Clash]

You could try another immunosuppressant like methotrexate with the remicade. My son was on remicade 15mg/kg every 6 weeks so upping the dose is an option. I'm not sure how budesonide(entocort) correlates to 6mp so can't help there.

Hope you find relief soon.

 

[FrozenGirl]

Increasing the dose is a possibility, I'm on 10mg/kg. Maybe some prednisone could get you into remission then Remicade could get it to stay there?

 

[FrozenGirl]

It might be time for a different biologic. Maybe humira? There is also lots of new ones coming out like entivyo, cimzia, simponi, etc.

 

[Fernando1]

Humira works in the same manner as Remicade, if you built antibodies Humira is not likely to work. My doctor put me on Entyvio (2nd infusion today) which works different than TNF blockers like Remicade which inhibit inflammation at the cell level:

Here is an explanation from their website

Entyvio is an integrin receptor antagonist. Integrin receptors are proteins expressed on the surface of certain cells, which function as bridges for cell-cell interactions. Entyvio blocks the interaction of a specific integrin receptor (expressed on circulating inflammatory cells) with a specific protein (expressed on cells in the interior wall of blood vessels), and thereby blocks the migration of those circulating inflammatory cells across those blood vessels and into areas of inflammation in the gastrointestinal tract.

 

[Fernando1]

I have a lot of rump problems myself. The first order of the day is to slow down the diarrheah cycle with Imodium or Lomotil.

Next you need to always clean the area with a baby wipe (not Tucks which contains witch hazel and irritates the area). Then you always apply Desitin or Balmex which protect the area from diarrheah, do this after you clean at least twice a day. This alone has help me tremendously.

Apply cold compresses using a gel pack.

There are hydrocortisone ointments that may help but you cannot use them more than 2 weeks at a time, in order of strength:

Hydrocortisone 2.5 ointment
Triamcinolone - do not use more than 2 weeks at a time
Fluocinonide - Extremely powerful, strips skin off so use it only 4-5 days at a time. Be very careful with this one since it will make the area raw

For the itching I use Prax which is an anasthetic, it is very mild and can be applied endlessly 4-5 times a day.

My butt problems are the worst part of my disease !

 

[danieldresen]

But it isn't diarrheah... its tenesmus. I keep the area clean and protected, just every time that lightning urge comes, nothing but blood or mucus comes out and I am in pain. Might ask about Entyvio. No antibodies... just my body requires more than they want to give or... wants it more frequently. Google red hair and medicine... makes me feel like I got the worst lot of genes possible. Lost the whole genetic lottery, or won...

 

[FrozenGirl]

Entivyo looks very promising. It might be a good option for you.