Intravenous treatment

[RuthWill]

Hi - Does anyone have experience with intravenous infusion treatment for ulcerative colitis? Remicade, Simponi, etc.

Thanks!

 

[trents]

Welcome to the forum, RuthWill!

Is your concern here that the injections might not be gluten free?

[RuthWill]

No. We have celiac with UC in our family so I’m wondering if the celiac community has any experience with infusion treatments. 

[trents]

In what sense? Their effectiveness? Side effects? Are you or is someone in your family already using this therapy or are you just considering it?

Edited January 30, 2023 by trents

[RuthWill]

Yea - exactly. How effective are the treatments?  Are there significant side effects?  Thanks for helping me clarify.  

[Wheatwacked]

Scary looking side effects.  Remicade Official Consumer Website

With Celiac Disease your autoimmune is weak and many vitamin deficiencies due to malabsorbtion syndrome. Most with Celiac and many other autoimmune diseases have low or deficient vitamin D, less than 29ng/ml.   Vitamin D moderates the immune system. Corticosteroids support the immune system while drugs like Remicade knock it out, opening you up for a host of worse diseases. . Our bodies make Prednisolone as a product of cortisol so taking it is a way of bypassing possible adrenal insufficiency. And it works. I've been on prednisone since 2012. Before GFD I took 30 mg to control my symptoms. After GFD down to 5 mg twice a day. But I took prednisone for two years before starting GFD so I have secondary adrenal insufficiency. Short term low dose would not have. No side effects. My favorite scare tactic to not take prednisone was "inappropriate sense of well being". I guess as far as most doctors are concerned if you are sick you should feel bad until they heal you or you die. The infusions seem like a temporary fix for a nutritional problem.

If your vitamin D is low (simple blood test that is accurate), less than 70-90 ng/ml, fix that first and any other deficiencies (D, B vitamins, choline, potassium are common). And of course Gluten FREE Diet. You can always try the infusion later if the vitamins don't help. I take 10,000 IU vitamin D a day since 2015 and 10 others I've added in along the way. By the fourth day of 10,000 I was like 'Sunshine in a bottle" 8,000 had not helped. Lower amounts were not effective for me. You'll recognize it when it happens.

[trents]

Ruth, my thoughts are that it is imperative that you and your family get control of the ulcerative colitis so whatever you must do to accomplish that is probably worth the risk. But there is one issue with some of those immune system suppressing agents you really need to ask about and that is, "Once I start, will it be possible to discontinue the med at some point if I improve?" The reason I ask is that I believe once Remicade therapy is started you cannot ever go off the drug without risk of experiencing a rebound of the colitis with a vengeance. I'm not a physician but I wonder if a limited course of prednisone might get you back on track with healing without the "I'll be on this forever" risk.

[Rogol72]

I agree with trents, it is important to get control of ulcerative colitis as a priority.

Nutritional deficiencies should be corrected as soon as possible, as it will help both conditions especially Vitamin D and Zinc. The body needs an adequate supply of vitamins and minerals to heal. With the malabsorption of celiac disease and blood loss of UC, that’s difficult to achieve without supplementation.

https://www.crohnscolitisfoundation.org/diet-and-nutrition/supplementation

You may find answers to you’re Remicade questions here …

https://www.crohnscolitiscommunity.org/crohns-colitis-forum
https://crohnsforum.com/forums/Remicade/

I’ve never taken Remicade, though was asked as part of a clinical trial years ago but decided against it.

I had severe ulcerative colitis before my celiac disease diagnosis. I was treated aggressively with prednisone initially, then asacolon and azathioprine for years. It took ages to taper off the prednisone, cycling between flares and clinical remission, yo-yoing dosage. I was told I would be on azathoprpine for life, but I haven’t taken it in 10 years and my UC is in long term remission.

If I knew then what I know now about the importance of vitamins and minerals in healing, I would have taken them years ago.

 

[trents]

Of course, the main risk associated with any immune system suppressing agent is that it increases the risk for developing other infections and even cancer. They all, more or less, are a shotgun approach to fixing the problem.

But let me ask you. Is your celiac disease (and that of other family members with celiac disease) well controlled? Are you and they diligent about eating gluten free?

[Raptorsgal]

Does anyone know if the Iron infusion is gluten free 

[trents]

It probably is but without calling the clinic/hospital and finding out what brand/product they use there is no way to tell for sure. Call the department where that is done and get them to check on that. Good question, though.