Is Remicade Helping?

[Wildanimalpark]

I need a reason to continue my daughters Remicade. Her Crohn's symptoms do not seem to fit in the box. She is suffering from stomach pain, fatigue, and occasional vomiting. She says someone is squeezing her stomach with a vise and this has been on going since 08/12. She has been hospitilized 8 times, two resection surgeries to remove strictures, TPN for three months, Remicade started in 08/12 and she has had six treatments that do not change her symptoms. Her stomach still hurts! All blood work shows no sign of inflammation but she is still anemic. Hmg was 9.1 but two iron infusions, Venofer, later she is at 9.9. Her iron is still low but went from 14 to 23. Her MRI shows only " mild increased enhancement and wall thickening in the ascending colon near the anastomosis in keeping with chronic fibrotic change versus scaarring." and " otherwise no active inflammatory changes" but " areas of increased fat proliferation in the pelvis and enlargement of mesenteric vessels are in keeping with the diagnosis of Crohn's"

This is very similar to her August MRI that showed the stricture but again NO active inflammation.

Her last hospital stay was 02/26 to 03/05 for a PICC line infection and C-diff infection. Treated with Flagyl and Vancomicin.

Her bowel movements are normal to soft and she is currently trying an antibiotic therapy of Refaximin for seven days followed by Flagyl for seven days and off for two weeks. We just started the second month of this series.

The Dr. wants to continue her Remicade as she is approaching 12 weeks since her last infusion, 03/27. He says if she stops she may develope anti-bodies and may never be able to take it again. I just see that she is getting increased risk of awful things and ZERO benefits. She is still in pain and has yet to show inflammation or ulcers any where. But I also would hate to remove a tool that could be helpful...... she is only 15 and has a lifetime of treatment ahead of her. They took out 24" of her small bowel and I am afraid of more strictures but cannot understand how REMICADE is helping her.

Any ideas?

 

[nogutsnoglory]

If she is showing low signs of inflammation it appears to be working but it might not be enough. Is she also on a drug like 6mp or Methotrexate? Usually this is co-administered to prevent antibodies to Remicade but if she is not on it, that may help fully control her symptoms.

 

[Lisa]

I agree - the Remicade may be keeping inflammation at bay - has she been checked for any GYN problems too? To make sure there isn't anything else going on? Many people do stay on an additional drug to keep things under control, I was on 6-MPO for a few years after starting Remicade., but eventually was able to drop it.

 

[Honey]

Hi there,
infliximab infusions was the only thing that brought my inflammation indicators back to normal. All other meds failed or made me ill eg Pancreatitis!! I have been off Remicade for a few months whilst having investigation for leg pain and weakness I am now on steroids and just restarted infusions. I too wondered why I needed to go back on this as I was feeling reasonably well!! It is to keep the inflammation down, otherwise I will go back to the dangerously high level as before. I hope that helps. I am sorry your daughter is having such a rough time. Hopefully, she becomes pain free soon. I know Infliximab has done that for me, even if I would rather not go into hospital every 8 weeks for this. My best wishes to her.

 

[Wildanimalpark]

The Remicade was started when she did not have any inflamation...she had been taking Pentasa but they could not explain her stomach pain and started Remicade to see if that helped. Her symptoms have stayed the same since August... low grade fever, stomach pain, headaches and fatigue but no test shows any active disease. Her Hmg in the started out as a 12 but since on Remicade has dropped. Other people have resections and stop all treatment for years which is why I do not understand why we should continue. I can put a lot of risk in the con column but nothing in the Pro column.

It seems others have stopped and started Remicade and I wonder why their doctor thought it was Okay to stop and restart.

How many people stop and find they cannot restart Remicade?

 

[ryansbronco]

When I started remicade I was on the third dose and ended up crashing at the ER about a week before the fourth dose. After surgery consult we decide to give remicade another go. It is still working today.
I then ran into lack of job and medical coverage. I was off remicade for about a year. I thought things we fixed.....yeah nope. I ended up going to the ER then in Hospital care for about a week. So I restated remicade. I now also take solumedrol with remicade. It is thought to help block any antibodies I may have developed while off remicade.

 

[Jmrogers4]

What about abdominal migraines? There was another parent whose child suffered these. I think it was Twiggy930, she may have more information but it is just a thought. That should tag her to respond.

 

[Twiggy930]

Her symptoms have stayed the same since August... low grade fever, stomach pain, headaches and fatigue but no test shows any active disease.

This sounds very familiar! We have the same thing going on here minus the Remicade (my son is on Azathioprine and Sulfasalazine). We have CRP and fecal calprotectin repeatedly come back normal but the abdominal pain has never completely gone away, and at the moment it is completely debilitating for him. We have been told that it is IBS in addition to Crohn's and we have been told that maybe it is abdominal migraines in addition to Crohn's. A good description of adominal migraines can be found here http://www.webmd.com/migraines-headaches/abdominal-migraines-children-adults.

In September we were told to have our son start taking a good probiotic for the possible IBS and high doses of vitamin B2 for the possible abdominal migraines. More info on the vitamin B2 and migraines can be found here http://www.migrainetrust.org/assets/x/50129 After he started taking these supplements things were good for a while and he only occasionally had abdominal pain. However, at the end of April he developed his second enthesitis flare and the abdominal pain followed quickly after. This coincided with an attempt at reducing his Sulfasalazine dosage. We put his Sulfasalazine dosage back up but the abdominal pain is STILL there. It is so bad he has missed 1 month of school! He was put on another course of prednisone to get the enthesitis back under control and it hasn't even touched the abdominal pain which makes it look even more like the abdo pain is not caused by inflammation. I don't know what the answer is.

Both the probiotic and the vitamin B2 are very safe to take so they might be worth looking into and trying. I also think that there is a psychological component to my son's abdominal pain. I don't believe that it is solely caused by stress and anxiety but I definitely think that stress and anxiety make it worse. He has some deep relaxation techniques that he uses and they help somewhat (mildly at best). I think our next step is to try amitriptyline.