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I just had my second infusion of Remicade and it seems that I am losing more hair now when  brush my hair then I did prior to starting Remicade Has anyone else experienced this?

 Reply posted for jsnyder.

You want your food clean, like with meat always check for added solution or spices added.  Almond milk is fine avoid carrageenan its inflammatory. Almond milk is easy to make at home.  I like Coconut Milk but it should only contain coconut, water, organic guar gum.  Mixing fruits and vegetables in the same meal can sometime has problems.  Most gluten free products are trash.  If you having symptoms there is potatoes starch and rice flour; and high in carbs.  

you seem to have the same fight in you that I have.  my take, educate yourself and always weigh the options, you can always try things and if they don't work out go back to the doctor.  most doctors have the position of the condition, even down to label you with a disease the offering no cure and in my opinion just poisons,  most GI have their standard way to treat the condition which we may need but it doesn't mean we can't seek other avenues.  I suggest researching a functional medicine doctor and checking out the book Digestive Wellness by Lipski.

 Reply posted for jsnyder.

jsnyder,
The obvious I'm not a doctor, and if you have really bad symptoms use medicine and doctors. 
I believe from my experience and research ulcerative colitis can be managed through diet, supplements, life style changes, and God.
For diet I recommend researching the SCD diet, Paleo.  PaleOMG is a great site.  I recommend eliminating Gluten, All Grains (when you have symptoms), Dairy except eggs if you can handle them, refined sugar, caffeine, alcohol, HFCS, and as many food additives as possible.  Try to limit the starchy carbs like white potatoes especially if you have symptoms.  Under my Doctor's direction I'm trying a high fat low carb diet.  Adding healthy fats to smoothies, salads, and soups.  I use a lot of hemp oil, coconut oil, coconut milk it adds a lot of calories into smaller meals.

Supplements I take are Fish Oil- buy the highest quality with highest EPA per serving that you can afford.  I take 6000mg of EPA 3000mg DHA fish oil everyday.  EPA is good for fighting off inflammation. I take a B-vitamin complex daily.  I take a multvitamin when I know I'm not eating enough.  I take 2000mg of vitamin C to support the immune system and make me pee a lot:).  I take least a TBS of coconut oil daily and 15g of Glutamine powder in a smoothie.  Glutamine it is best to work up to 15-20 slowly.  I take VSL#3 2 packets daily its a RX probiotic.  If you have crohn's look into lactobacillus acidophilus dds-1 has your probiotic.  I take 10g of EnteraGAM its a medical food that helps you absorb food better.I started this a month ago and I have gained a few pounds.

 Reply posted for hans409.

Hans004-- Can you also tell me more about the supplements your on? Do they help? I just saw a nutritionist and she recommends I start to take bifido powder, fish oil, and L-Glutamine. My doctor said none of those would help. But maybe that's not his area? What is your opinion? Should I be doing it? I'm seriously considering. Thanks!

 Reply posted for hans409.

Thanks Hans. I actually was told by my doctor that Humira was my "only next option" at this point. He said since I've responded well to Remicade, I should stay in the same drug class. However, I have the same concern: If I built up antibodies to Remicade won't I do that on Humira? I wish there was something more longterm and less stressful. This whole thing is just a mess.

I too have learned the importance of diet and I need to do better at it. I am gf but I could cut out more. I do very little dairy but am wondering what else I can do. Lately no matter what I eat, my stomach has been cramping a lot and more intesnely and I have serious urgency to get to the bathroom. This hasn't happened in years so it's quite the change.

What is the best diet you've found to control? I'd be interested in hearing. I do love smoothies--fruit, kale/spinach, coconut or almond milk, and some protein powder. That sits very well with me and I've never had problems. I'm wondering if too many gf products (bread, pasta etc) trigger my stomach more too. 

Once switched from Remicade to Humira I'll be taking only Humira and Lialda. I wish I only needed Lialda. I'm concerned that Humira seems extreme for symptoms, but it's routine so that is what my doctor wants to do next. I don't know, I just feel like there has to be something else. I'm getting less scared hearing all of you on this forum talk about what you go through. It's nice to know I'm not alone, although I've battling since age 17 so I feel I'm just too young for this. I'm now 25 and hoping to start a family with husband soon, but am afraid that won't be possible. I hope to goodness it is.

 Reply posted for jsnyder.

Hi jsynder

Thanks for your opinion, and glad that remicade stablized your condition.  the build up of antibodies to TNF blockers in remicade is a normal effect, its also a possible effect on humara.  there is another drug called simponi that is simular to humara.
For me I have not been put on remicade or humara.  Im managing my ulcerative colitis through diet no pop, caffeine, dairy, beer, and gluten, all inflamatory foods.  I take VSLR#3 Rx probiotic, Enteragam a medical food that aides in absorbation of foods, fish oil, glutamine powder, coconut oil, medical pot.  By symptoms are pretty controlled unless stress attacks.
Im willing to share more if you are interested.  i believe a lot can be cured with diet.

Sorry for all the type Os and spelling my phone and this site do not get along.
Wishing you health and be grateful for the good things.

 Reply posted for hans409.

Hi,
What have you ended up doing as your treatment - Humira or Remicade? I just wanted to share that I'm 25 years old and I've been on Remicade for 8 years. I have been in complete remission most of the time. It was very scary to start with and didn't know what to expect, but I've had very good luck with it. However, my body has now built up antibodies so my doctor is saying I need to switch over to Humira soon - as soon as my flares start showing up or I have symptoms again. I've been having a few here and there but am too scared to try Humira. 

You have nothing to worry about on Remicade if that's what you're doing or thinking of doing. It made me live a normal life and get through college without many complications. It did make me really sleepy and I did get headaches from it, but I found that if I rested/napped/watched movies the day of the infusion right after, I felt much better the next day.

I hope this helps ease your mind. Please do tell what your course of treatment is now.

 Reply posted for firestar.

Hi! I have experienced the hair loss.  When I am in a flare-up, I tend to lose more hair while on remicade.  I have been taking the supplement called Biotin (It is for hair, skin, and nails).  That has seemed to help my hair a little bit. 

As for other side effects I have experienced: hives on my arms, swelling in my face (bad allergic reaction..dr. now has me on a drug prior to treatment), fatigue, chills, headaches. Otherwise, it has not been too bad.  I have been on it for 3 years.  What scares me is the thought I have to be on it forever! 

I wish you the best of luck in your journey!

Em

 Reply posted for firestar.

Hi, my husband started Remicade on June 7, 2012 - 17 days after 7 days in the hospital from an emergency surgery due to internal bleeding that nearly cost him his life. He'd had horrible, mysterious, odd symptoms from April 2011 (13 months!!) (diagnosed with CD December 2011) until the surgery happened and the Remicade began. The Remicade has been working wonderfully. The only thing is that he had to switch from 8 weeks to 6 weeks because during week 7 he was experiencing mild symptoms. Also, on the day of Remicade he avoids coffee so the nurses don't bug him about his blood pressure :). The lack of coffee and/or the Remicade infusion may cause his sleepiness throughout the day. Other than being sleepy, he's not experienced any other side-effects from the Remicade and he's been on it for nearly 2 years. He is experiencing mild symptoms right now and we have an endoscopy scheduled for tomorrow.  So who knows, maybe Remicade isn't working anymore... but I hope not. The amazing specialist he saw in 2012 highly recommended he take methotrexate along with Remicade, but his GI wouldn't agree to that. The specialist said he had one of the worst, most severe cases of Crohn's she'd seen in years and figured his case was so bad - start him on the strong stuff together instead of wait until he got bad and then try to add more medicine later. We had mixed feelings about this, but the GI dr said just Remicade - every 8 weeks. But then we had to do every 6 weeks anyways.. and now he's having more symtpoms... so ahhh. Remicade is working though. How long will it work? I'm not sure. 

 Reply posted for beckyzee.

Hello I share the same fear about these biologic drugs.  I have had UC for ten years.  Over that time I have had three major flares that have required visits to the ER.  The last 2 flares were within this last year.  I have used prednisone to stop these flares.  I have tried the following drugs which did not improve my condition Sulfasalazine, Mesalamine, and azathioprine.  I've currently been off of prednisone for two weeks.  I'm currently taking VSL#3, Cuccurmin, and Fish Oil, and my bowel functions are pretty normal.  I had a colonoscopy in Feb that showed mild to moderate left-sided UC.  My GI doctor is recommending Remicade or Humira as the next step in treatment.  These drugs seem extreme for the state of my condition.  Does anyone have an opinion on the use of these drugs?

 Reply posted for karenakv.

I've also had UC for over 20 years.  December of 2012 I started Remicade, and had a fabulous 7 months of remission on it, with no noticeable side effects.  Then it stopped working.  Just started Humira, so will see where that takes me.  I highly recommend Remicade, though, as I believe it usually works for much longer!

 Reply posted for karenakv.

So far the only thing I have noticed as an increase in the amount of hair I see in my hair brush every morning. The first dose of Remicade there were a couple of back twinges but they went away immediately after I completed the infusion. I have heard that it makes some people sleepy and some people get hives but I have not experienced either of these.

 Reply posted for firestar.


I have had UC for 21 years and have managed okay on Asacol and Prednisone. Now neither drug is working. I've tried Imuran and 6 MP and couldn't tolerate either.  Got pancreatitis from one and severe nausea and vomiting from the other. Now my doctor wants to start me on Remicade and I'm scared to take it. Others experiences with Remicade?  

 Reply posted for firestar.

You should Google "Remicade hair loss." You will find that there are some reports of hair loss associated with Remicade. In your case, it sounds as though it might be difficult to quantify the rate of loss, since you were losing hair (or so it seems from your account) before taking the Remicade. In that case, you have to do a cost-benefit analysis: is the improvement you might get in your digestive condition worth the increase in hair loss? If not, you might ask your doctor to recommend alternative treatments that do not cause this side effect--perhaps Humira?